Disabled Lives Matter

Season 02, Episode 21 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Joe Rhea

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.

Nadine Vogel: Hello everyone, this is nadine vogel your one of your host for disabled lives matter we are more than a podcast we are a movement, and I am joined by my amazing co host norma stanley.

Norma: Hello everyone.

Nadine Vogel: hey hey. how are.

Norma: You i'm great great looking forward to today's show.

Nadine Vogel: I know well today's gonna be really cool because we are interviewing Joe Rhea.

Nadine Vogel: As Joe likes to say there are moments in our lives, when we look back and say that there was some defining moment, you know for for me it was when my first daughter was born with severe disabilities norma, I think, probably for you too right.

Norma: yes. yes.

Nadine Vogel: For Joe However, it was an age 14 and.

Nadine Vogel: Although life changed he never really looked back so Joe welcome to the show.

Joe Rhea: Thank you for having me it's an honor to be here i'm excited.

Nadine Vogel: Absolutely, so I left everybody kind of wondering age 14 well then, what the heck happened.

Joe Rhea: yeah.

Joe Rhea: I was.

Joe Rhea: Just like many boys in Olathe, Kansas a suburb or Kansas City, I played sports pretty much my whole life I loved all the sports, but unfortunately I also love football and on September 11, 1984.

Joe Rhea: I was playing football and I broke my neck and was paralyzed from the neck down. for a while.

Norma: Wow.

Nadine Vogel: So. September 11 has been an interesting date for many reasons for you. Right.

Joe Rhea: Yes, yes.

Nadine Vogel: Ooh, my gosh.

Nadine Vogel: Now. I know that you, you know you go and you present globally at conferences and things like that, and one of the things that that you say and make sure I say this correctly that you believe there are only two types of people in the world ones who fight and ones who don't.

Nadine Vogel: And you know what I I actually my so my older daughter has lots of disabilities her whole life but has been sick recently and I took that line I said so, which one, are you.

Nadine Vogel: Which one, are you so I stole that from you, I just want you to know.

Norma: Great line.

Nadine Vogel: Exactly. So if I recall correctly, after your accident, they were like yeah give it up babe, if you're not going to be walking you know running doing anything but you are one of those who fight so tell us a little bit about the story.

Joe Rhea: Sure. Well, and they came in basically two days later, and first thing they did was tell my folks exactly what happened to my neck that i'd broken My fourth and fifth vertebrae compress my fifth herniated my seventh.

Joe Rhea: I bruised and flattened my spinal cord, and that I needed to be prepared to use a wheelchair, the rest of my life.

Joe Rhea: And then they said, but the good news is is that your bones broke perfectly so we don't have to operate we're going to put you in a halo.

Joe Rhea: I had no idea what that meant until they started screwing it into my skull and I found out really quick.

Joe Rhea: You know, and I always tell people when I speak, that there was two sounds and I remember very distinctly that day my mother crying and my skull cracking.

Nadine Vogel: oooh. oooh.

Joe Rhea: Oh, you you hear it, because they keep you awake and they just screw it right in, and you can see my scars yeah.

Nadine Vogel: Okay i'm hurting just hearing about.

Norma: Yes.

Joe Rhea: Here's The funny thing about that being a 14 year old boy they had to shave my head and I was not happy about them shaving my hair.

[Laughter.]

Nadine Vogel: That was worse than the screwing in itself.

Joe Rhea: Initially, it was. I was like, don't do that, and then I.

Joe Rhea: So yeah so I looked at my neurologist the doctor and great man, but he was a typical neurologist dry as. can be.

Norma: Yes. they are.

Joe Rhea: Nopersonality and I just looked at him when I said after done, I was kind of nauseous I said, am I going to be able to play football or baseball again not, only am I going to walk again I want to know if I was gonna play football or baseball.

Nadine Vogel: Right.

Joe Rhea: He looks right at me and he goes no he didn't say maybe said we'll see, he said no.

Nadine Vogel: yeah well there's an optimist for you.

Joe Rhea: Yeah, but it made me mad it just really ticked me off, and I just kind of made a promise right then and there that if I get an opportunity.

Joe Rhea: I was going to prove him wrong I was going to do whatever I could to make this man, eat his words and then basically seven days later, my left leg, kind of wiggled and that was the opportunity that I hoped for.

Joe Rhea: And then from there was a battle, it was a constant therapy fight rebuild going through the process so.

Nadine Vogel: Sure. but you know I don't understand and Norma I have these conversations why, when my older daughter was born, I remember, I called the N-I-C-U doctor the doctor Dr doom and gloom.

Nadine Vogel: Right, and you know and the neurologists right, I mean we've been through neurologists I like eat them for lunch, you know.

Nadine Vogel: Because they're just.

Nadine Vogel: I won't say they're awful people, but they come off as. awful people.

Norma: Very insensitive. very insensitive.

Nadine Vogel: Well, they mean well. they mean well.

Joe Rhea: They do.

Nadine Vogel: So you have obviously endured, I can only imagine but tremendous pain, emotional, physical going through all this so talk to us a little bit about that the physical and the emotional.

Joe Rhea: yeah that's a really good question oh.

Joe Rhea: physically the pain.

Joe Rhea: was really started coming back when I started getting my feeling I describe it as if you can remember growing pains in your body like in your legs just multiply that by 100 all over my body.

Norma: Wow.

Joe Rhea: It was really, really bad it was really painful and, unfortunately, it seemed like it always was the worst at night.

Joe Rhea: When I couldn't move my arms to hit the call button.

Joe Rhea: I couldn't yell out enough because it affected, my phrenic nerve to get the nurse to come in and, finally, I would cry myself to sleep and that's when they would come in and wake me up and say I have pills.

Nadine Vogel: [Laughter.] Why does that not surprise me.

Joe Rhea: Exactly. So the pain, you know as a 14 year old boy you just kind of deal with it, but uh emotionally is what was probably the hardest for me.

Joe Rhea: I was really heartbroken what happened to me and, unfortunately, you know my folks did the best that they can, but my mom married a real cowboy he's a cattleman roped.

Joe Rhea: did all that and his his whole mentality was we're not going to talk about it that's old news, you need to suck it up move on and get over it, and that was kind of how I lived at home for the next.

Joe Rhea: Five years, and so I just white knuckle balled with my emotions and really didn't even get help for about 10 years. emotionally.

Norma: I was going to ask you about that, with your parents and you know because that's part of I know I feel my daughter's pain is, it seems to me, and I was going to ask you how did your parents handle that so how'd your mom, kind of maneuver that whole thing between your dad and you.

Nadine Vogel: yeah that must have been hard for her.

Norma: That must have been challenging.

Joe Rhea: It was really hard for her.

Joe Rhea: Because I think she would have put me in therapy, but I think obviously she wanted to follow her husband's lead and you know.

Joe Rhea: here's the double edged sword of that mentality, it really helped me physically because they pushed me so hard.

Joe Rhea: But it destroyed me emotionally, at the same time, so I was getting better physically doing things, above and beyond that what they thought possible and internally, I was really dying inside I was so heartbroken it manifested as anger.

Joe Rhea: I was mad.

Joe Rhea: At everything and everyone.

Joe Rhea: And it really came out when I uh.

Joe Rhea: I made the tennis team, two years after my accident.

Nadine Vogel: Oh wow.

Joe Rhea: Even though I could barely hold the racket but I was able to do it, and I even won tem matches and lost two yeah I was pretty good.

Joe Rhea: On the JV.

Nadine Vogel: Oh my God, you're like Superman. [Laughter.]

Norma: Awesome.

Joe Rhea: I was a really good athlete but anytime I lost it wasn't because I lost it was because of the injury and I would break my rackets and throw my rackets embarrass myself, but I didn't know any different I didn't have somebody to explain, you know it's okay to be mad.

Nadine Vogel: Right you didn't have the coping skills.

Joe Rhea. Exactly.

Nadine Vogel: Yeah. So, so when you think about this, you know I mean obviously both both of those right the injury itself, and then the follow up obviously changes you as a person right and it changes your perspective on just about everything.

Joe Rhea: Yes.

Nadine Vogel: So when how and when did kind of that that pivot happened for you.

Joe Rhea: Yeah. Uh I 24 I had moved to Vail, Colorado to be a ski bum and I thought moving out there would fix everything and it didn't I had a.

Joe Rhea: pretty much my rock bottom moment I was living with my roommate, who was a good friend of mine, for a long for many years, his mom had died of cancer The night before and he was going to go home to see her and.

Joe Rhea: He went to go pick up some groceries for us before he left and at that particular time, I guess, I was drinking vitamin D milk and he bought 2%.

Joe Rhea: I laid into him. I so angry and upset and pissed off that he would do that and how stupid, could he be and.

Joe Rhea: And then I went down my room and I cried my eyes out because I didn't want to be that person I wasn't this person not a mean person, and that was my breaking point so I said I called up and said I need help, I can't I can't do this anymore.

Nadine Vogel: And so.

Nadine Vogel: From that point forward what was that what was the process what you know, obviously there's physical recovery and there's emotional recovery right.

Nadine Vogel: So, what was the process and recovery for that piece different versus the physical.

Joe Rhea: Well, physically i'd already plateaued I pretty much had gotten what I was going to gain emotionally, it was then starting to see a therapist getting on an antidepressant.

Joe Rhea: learning how to cope, a little bit better with what I was dealing with in my anger and it really helped me a lot to get on an antidepressant at that particular time, I was.

Joe Rhea: Again I didn't know that it would help, but once I got on it, it was just amazing for me at the time.

Nadine Vogel: The world kind of opens up right.

Joe Rhea: It did absolutely.

Norma: You know it's important that you recognized that there was something that you didn't want to hold on to that you need to talk to somebody and that.

Norma: You know process that through because so many people don't admit there's something going on, when they're always angry and something is not who they really they really are it over to do, and they don't know who to turn to.

Joe Rhea: Exactly.

Norma: it's a lot as a 24 year old to know that you needed help.

Nadine Vogel: Right.

Joe Rhea: Yeah it took a lot of courage for me to admit that.

Joe Rhea: And I you know I.

Joe Rhea: like to say that hey I just can't do this on my own anymore. So.

Nadine Vogel: Right, and how did that change your relationship if it did with with your mom with her husband.

Joe Rhea: Ah, probably not much because I was living in another state, so they didn't really get the benefit of seeing me but.

Nadine Vogel: Right.

Joe Rhea: You know my mom and I were close enough to where we talked a couple times a week but.

Nadine Vogel: Awe, that's good.

Joe Rhea: Yeah it was just from that perspective I mean I was, I think I understood more what she was going through.

Nadine Vogel: Um, hmm.

Joe Rhea: and how hard it was on her because you know, while I was the one physically going through, but I think she was hurt even more mentally than I did.

Nadine Vogel: Right right. Absolutely you know, one of the things that's interesting for me is you know you're an athlete like you said right, so you know you play golf you ski you play tennis you I mean every sport imaginable.

Nadine Vogel: Was it ever even an inkling for your thought that you would continue to play sports but do it as a para athlete you know, like a Paralympic sport versus mainstream.

Joe Rhea: yeah I actually went to the United States Olympic facility in Colorado and wanted to try to be a skier but basically they deemed that.

Joe Rhea: Only my right arm was disabled enough to compete, so that I would have to not use my right arm against able bodied athletes who everything else was like an amputee.

Joe Rhea: really strong everything part of their and I here I am they had a spinalcord injury so everything was still affected, I had quadriparesis.

Joe Rhea: A weakness in all four limbs, but that that was what they deemed so I knew I couldn't compete against in that in that field but yeah I thought. about it.

Nadine Vogel: yeah because I think that that's also kind of a defining moment right, how do I continue if folks aren't an athlete before they get injured, I think it's probably different like for me, you know I tried to be an athlete but i'm not.

Nadine Vogel: I wonder if, because you were an athlete before you had that strengthen you, you have you know I think you had so many of those physical you know mental qualities that you just had to pull out. Which is in a way.

Joe Rhea: It defintely helped.

Joe Rhea: That definitely helped.

Joe Rhea: That I was, I was driven. motivated.

Joe Rhea: Competitive really competitive and just to kind of prove everybody wrong.

Nadine Vogel: yeah I love it I love people that try to.

Nadine Vogel: Prove everyone wrong and are successful not just try.

Nadine Vogel: Successful so i'm curious Have you ever gotten back at those Doc initial doctors and folks that said no never huh.

Joe Rhea: No that was so long ago, but it would have been funny to do that.

Nadine Vogel: Well, you know what I liked the reason I asked the question.

Nadine Vogel: Is because my own personal situation with my daughter, they said she'd never walk talk all these different things she spent three months in intensive care when she was born and I made sure that they not only got photos but they got to meet her.

Nadine Vogel: As a young adult who is you know walking talking applying to colleges doing all these things, and for me it was more about not hey look, you were wrong or hey Look how great she is but.

Nadine Vogel: I want you to change your perspective.

Norma: Absolutely.

Nadine Vogel: I want you to think differently and not be so doom and gloom yes, sometimes that is the outcome.

Nadine Vogel: But, can you imagine.

Nadine Vogel: If you really think like she for you, Joe where you have a completely different mental attitude right that you're going to make it, no matter what, if they could potentially embrace that.

Joe Rhea: Sure sure.

Norma: Well it's so important and the way they break it parents, I think it should really think a little differently about how they give them a little hope, I mean don't come, I mean you know mix reality, with the hope. In some way, in my opinion.

Nadine Vogel: Right cause otherwise they're like you know I find that it's like a self.

Nadine Vogel: fulfilling prophecy for them see I told you you would never walk.

Joe Rhea: You know I.

Joe Rhea: You know, I think that i've done a lot of thinking about this.

Joe Rhea: And they want to give you the worst case scenario to kind of cover their butts if you. know what I mean.

Joe Rhea: So if you don't get any any better than they say look I told you, but if you gain then they're like that's just you know lucky you you've got more than we thought.

Nadine Vogel: Yeah.

Joe Rhea: And yeah I was.

Nadine Vogel: There got to be a balance, I don't know.

Joe Rhea: I agree.

Norma: I agree there should be a balance of some kind, but.

Nadine Vogel: I think they need some special mental health training themselves.

Norma: I agree with you. You know. for our children. You want to give them.

Norma: Some idea that you know that you have to work hard to get them to where they need to be the same time. Let them think.

Nadine Vogel: Right right.

Norma: That there is a possibility.

Nadine Vogel: Absolutely. Joe you were 14 I mean you were you were in that formative stage right.

Nadine Vogel: yeah especially a boy athlete oh my gosh um well, so we need to go to a very short commercial break, but when we come back, we will come back with Joe Rhea and have some more really cool stories we'll be right back everybody.

Voiceover: And now it's time for a commercial break.

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Voiceover: And now back to our show.

Nadine Vogel: Hello everyone, this is nadine vogel and I am joined by norma stanley your co host of disabled lives matter hey norma.

Norma: Hey.

Nadine Vogel: This has been such a cool show talking with Joe Rhea.

Norma: Yeah.

Nadine Vogel: Joe you you're you just one amazing guy for a lot of different reasons, but especially because you have really made it your mission in life, to make a difference in other people's lives right.

Nadine Vogel: and

Joe Rhea: Yes.

Nadine Vogel: that's you know talk about paying it forward right, and I know that you do that, in a variety of ways, including you know speaking and so forth, so i'm wondering if you could share with our audience all the different ways, you do that.

Joe Rhea: Sure um well I started out just as a waiter server for many years, this doing through sharing my story someone suggested I get into public speaking.

Joe Rhea: And I really didn't know how to do that I got involved with the Foundation called Think First, which is a brain and spinal cord injury prevention foundation.

Joe Rhea: Speaking to kids K through 12 within about a month, they made me their lead speaker and I did that for about nine years where I spoke to about.

Joe Rhea: 150 times a year to kids in Kansas city K through 12 and then through that I developed a collegiate program for athletes and you took what I learned and called program Bars, Cars and Catastrophes, this is pre Uber and Lyft.

Nadine Vogel: {Laughter.} I love it. Was it bars, cars and catastrophes right?

Joe Rhea: yeah

Naidne Vogel: I love it.

Joe Rhea: yeah.

Joe Rhea: We have another. 16 to 25 year olds suffer brain and spinal cord injuries more than than any other age group, and they do most often in car crashes.

Joe Rhea: And then you factor in alcohol and then there's falls and diving and fighting all the thing the young people do so I just developed that Program.

Joe Rhea: And then through there I started getting into doing programs on mental health and overcoming adversity and.

Joe Rhea: i've done that i've looked into corporations and goal setting and peak performance and then during covid which kind of killed everything.

Joe Rhea: I was able to finish my book and publish my book called When Life Knocks the Hell Out of You, Beat the Odds, and so I was fortunate to get that done that only took me about 20 years to finish.

Nadine Vogel: Okay, so yeah just a little time so let's let's kind of dissect we haven't you have a little time so let's dissect each one so i'm going to start with the book and we'll work back.

Norma: Yeah.

Nadine Vogel: Let's start with the book so When Life Knocks the Hell Out of You.

Joe Rhea: Beat the Odds

Nadine Vogel: Beat the Odds. So tell us just give us an idea, because I, I suspect, people are going to want to order this book and i'm going to have you tell everyone how to order the book so let's talk about the book sure.

Joe Rhea: Sure um.

Joe Rhea: Believe it or not, I started handwriting the book in 1998 to set because I had so many people say you should write a book, you should write a book and i'm like.

Joe Rhea: i'm 28 years old, I mean or how how much of a story do I have, but apparently they thought I had a good story, so I started writing what i'd gone through and.

Joe Rhea: It sits there for a while, then you put it on you know, a word processor, and then it's not a computer and then the right anyway.

Joe Rhea: Finally, I met somebody That was a publisher here in Kansas city and she said, you know send me a chapter, you know, everybody thinks they have a book and.

Joe Rhea: I was like Okay, I sent her, the whole thing anyways she gets back she goes, this is really, really good and i'm really shocked I wasn't expecting much, and so she was able to help me get it published but it's really the.

Joe Rhea: The journey of my emotional physical recovery from 14 through the end of college to Vail and ultimately discovering what was my really the purpose for.

Joe Rhea: Why, I stay alive and what I wanted to do when you know, since I couldn't be a professional athlete or achieve those dreams and goals, which are really important to me.

Joe Rhea: What was the reason and, ultimately, it really was I always knew that I could be a father and that the last chapter of the book is called Molly it's about my daughter.

Joe Rhea: And the day she was born I knew that it was no no longer about me it was about her, and it was just the best thing ever.

Nadine Vogel: that's that's really fabulous so before we go into my other questions, how can folks get the book.

Joe Rhea: Sure it's currently on Amazon, you know just plug in the title When Life Knocks the Hell Out of You and it'll pull right up there's the book format, you can do a kindle unfortunately it's not in.

Joe Rhea: audio yet that's my next goal.

Joe Rhea: You go to my website Joe Rhea, excuse me, joerhea.com.

Nadine Vogel: Okay.

Joe Rhea: You can order it through that as well too.

Nadine Vogel: Excellent Okay, because I know our listeners are going to want to immediately want to do that so let's work backwards, then i'm going to start with Think First so tell us a little bit about Think First because it sounds really cool for kids.

Joe Rhea: Sure, it is the national program it's a nonprofit it's I think it's probably in almost all 50 states it's like I said it's a national brain and spinal cord injury prevention program used to be called Heads Up.

Joe Rhea: And then they changed it to Think First and they go to K through 12 and they really what they do is they have a lead speaker who comes in and set a tone.

Joe Rhea: Then they bring somebody who's in a wheelchair he's been paralyzed somebody who has a brain injury they're called voices and injury prevention.

Joe Rhea: And they share their story about what they've gone through, because ultimately brain and spinal cord injuries are preventable on in most cases, from wearing a seatbelt or speeding drinking and driving making good choices thinking first about what you do.

Joe Rhea: Should I dive into this pool before I jump in.

Joe Rhea: You know check the deep end and.

Joe Rhea: You know, make sure it's the it's the deep end versus the shallow end or before I do or dive into a creek Maybe I should jump in feet first and make sure it's not two feet deep instead of 10 feet So these are things and I loved it I just after nine years and 150 times a year.

Joe Rhea: I just wanted to do something else.

Nadine Vogel: yeah, no, no, but I think it's great and so, for those of us, you know for the listeners out there, they have young children.

Nadine Vogel: Um.

Nadine Vogel: That are having these kinds of experiences that I just I wanted them to know about Think First absolutely so now let's go to bars cars and catastrophes I just I just love the name.

Norma: Great title.

Nadine Vogel: The name, you know when I when I hear that name I just I think of fraternity parties.

Joe Rhea: Exactly. that's kind of what I thought of you know, but ultimately, I really spoke mainly to college athletes.

Joe Rhea: They think they're invincible you know they're in shape, you know they're as strong as they can be they finally get the weekend off to go party and then they really.

Joe Rhea: You know party hard, then you find out a lot of them have are depressed so they drink and do other things.

Joe Rhea: So I just really wanted to give them some really good information and some ideas and share my personal story.

Joe Rhea: about what happened to me, and so that they can make good choices in their life and understand that, even though they think they're strong as they can be that they're still vulnerable.

Nadine Vogel: Yeah.

Joe Rhea: and to think about the their decisions, because often they can be catastrophic in nature and that decision doesn't just affect them does it, it affects their family everyone they love and if you become disabled it affects everyone in your in your path for the rest of your life.

Nadine Vogel: Right, they also could use that Think First.

Joe Rhea: Exactly. You know that was the tie in.

Nadine Vogel: yeah no absolutely.

Joe Rhea: I just wasn't able to call it Think First.

Nadine Vogel: Think second.

Joe Rhea: Exactly. Think again.

Nadine Vogel: Think again. Oh, I like that one think again there you go um so you know it's it's interesting, I think that you know mental health issues are the most stigmatized of all disability types in our society, and I find that.

Nadine Vogel: college students athletes, you know they even more so they are right and they're hiding out.

Nadine Vogel: Any thoughts or suggestions you know, to help these folks it's just they're at they're at these crucial stages in their lives, and they just need to be able to acknowledge what they're experiencing.

Nadine Vogel: And you know whether it's the College, the university the family, people are just pushing it down bury it.

Joe Rhea: yes.

Joe Rhea: yeah i'm sure I thought a lot about this I mean for, especially young boys first it's suppress it, you know suck it up, but even for girls nowadays I think we're afraid to admit that we need help.

Joe Rhea: And then we can't handle this on their own, that if we actually go and say hey I can't do this it's a sign of weakness but asking for help, really is a sign of strength, it takes a lot of courage to admit.

Joe Rhea: That you need help and it's okay to do that, I mean for me I wasn't getting any joy out of the things that I loved and that was a telltale sign.

Joe Rhea: I was angry all the time was another sign that I didn't know this at the time I didn't know that my anger was a mask for depression.

Joe Rhea: And so I had to learn these things, and so really I speak about these things to students and college athletes and.

Joe Rhea: And I get them to think about if they're in the audience and they're feeling that they're having these thoughts, you know they know if they're struggling.

Joe Rhea: That it's okay to go to your coach or and say hey you know I think I need to talk to somebody because, believe me when I say this.

Joe Rhea: The first time I saw purpose and she said to me it's okay to feel the way you feel.

Joe Rhea: I lost it I literally started bawling because I hadn't heard that it was like a huge weight was lifted off my shoulders, that it was okay to be pissed off at the world about what happened to me.

Joe Rhea: But with that said what she made me realize and i'm glad she did it's not okay to allow those emotions to run your life and they were running my life, and they were making my life very difficult and unsatisfying, and so I was glad I went and asked for help.

Nadine Vogel: So how do you how do you how do you do that, how do you, what do you have to do to those emotions don't run your life.

Joe Rhea: well.

Joe Rhea: Its first acknowledging them acknowledging that they are, and I mean we have to be brave enough to look at ourselves and say.

Joe Rhea: Am I doing the things that I love I'm I getting up and going to you know out with my friends, do I enjoy these things, am I staying home all the time, do I want to sleep all the time.

Joe Rhea: These are telltale signs, but you it's taking the first step it's making decision that I need to go and ask somebody to help me through this process because what I learned is that if you're depressed and I mean clinically.

Joe Rhea: depressed it's not just you can get over it it's a chemical imbalance, it really is, I mean, and believe me when I say this depression can be more debilitating then paralysis.

Joe Rhea: Now, when i'm you know paralyzed if you're happy you'll get up and go do wheelchair basketball you pay attention you'll do these things, because you're happy, but if you're depressed you don't want to do anything and there's times, where I never wanted to get out of bed.

Nadine Vogel: Go ahead norma.

Norma: No.

Norma: I've been through that and didn't even realize it and.

Norma: never really wanted to dress really I want to sleep all the time I didn't realize that's what it was.

Norma: And I was in my you know.

Norma: Early 50s 40s time.

Norma: So yeah you know I finally was able to work my way through it. I didn't know I needed help or how to get help it just kind of went away, but once it went away I realized, there was a period of time, where I was not myself it wasn't me didn't I didn't know it.

Nadine Vogel: Right yeah.

Joe Rhea: Go ahead i'm sorry.

Nadine Vogel: No, no, please go ahead.

Joe Rhea: I was going to say in that aspect of feeling tired all the time that's another sign as well, especially for young people, you shouldn't feel tired all the time.

Nadine Vogel: Right.

Nadine Vogel: Right, but you.

Nadine Vogel: You made a point earlier about that it's a chemical imbalance.

Nadine Vogel: Yes, say, and you also made a point earlier about you know, taking antidepressants and I think that in and of itself is stigmatized because people don't understand it's a chemical imbalance.

Joe Rhea: Correct.

Nadine Vogel: Right right and that you sometimes need to treat a chemical imbalance with chemicals I mean I hate to say it, that.

Joe Rhea: I say it's like a vitamin for your brain.

Joe Rhea: In essence, it really is your brains depleted of serotonin you can't put that you can't build it up on your own if you're clinically depressed and again, you have to be diagnosed.

Joe Rhea: You know can't just make you have to go see a therapist and let them diagnose you, but if you are then suggesting i'll talk to them about an antidepressant may not be for you, but it might be and.

Joe Rhea: You know, trust me when I say when you start feeling better again you'll notice, I mean they said it would take three weeks for me to feel it, I felt it in four days.

Joe Rhea: I mean, I really woke up and I was like yeah I feel happy.

Nadine Vogel: And it wasn't it.

Joe Rhea: wasn't high like i'm doing. drugs.

Joe Rhea: I literally felt happy and I hadn't felt like that in a long time and my roommate was like, you're weird.

Nadine Vogel: Well, but I also think you know you may I hadn't heard this vocalized before, but you said that you know the mental health of depression can be more debilitating than the physical disability.

Joe Rhea: Absolutely, it can. yeah.

Nadine Vogel: People don't people don't realize it they don't accept it, and again it speaks to the stigma right because people to your point earlier, I think you get over it, you know, but they see someone in a wheelchair, and they won't say oh we'll just you know get up out of the Chair get.

Nadine Vogel: get over it right.

Nadine Vogel: But.

Nadine Vogel: For you, I mean oh my gosh you you've experienced both on many levels and, obviously, you are the epitome of the camp that these are the people that choose to fight it.

Nadine Vogel: And not fight.

Nadine Vogel: angry fight but fight for themselves, fight for, to have their life back. I guess i'll say

Joe Rhea: Yes, yes.

Nadine Vogel: You know and and, I suspect, because of the fighter that you are had you not gotten the physical piece back, and you, you are using a wheelchair or crutches you still would be the guy you are today. Because you're affecting so many.

Joe Rhea: I think so. well, I definitely would have been a fighter.

Joe Rhea: yeah I mean the you know there's for the longest time, one of the things that really was difficult for me, and this is my bane of my existence for a while, is.

Joe Rhea: To look at me now you would never know, I was once a quadriplegic both good and bad you know you don't know it, but you don't, then you don't know what what i've gone through to get to this point.

Joe Rhea: I see somebody in a wheelchair playing wheelchair tennis and you think man that is amazing look at that person.

Joe Rhea: You see me playing tennis i'm just some guy playing tennis right and that was hard for me, because I, you know, and then I would feel bad because I wanted recognition and that made me feel bad about myself that I even thought like that.

Joe Rhea: I saw guy win an ESPY his name is Kevin everett of the buffalo bills he broke his neck playing football was paralyzed was all over ESPN a year later, he was one Yes, he walked on stage.

Joe Rhea: Every professional athlete you could think of stood up and was crying and applauding, and here I was angry and jealous, and then I felt so bad that I was jealous of this man of this well deserved ESPY.

Joe Rhea: That made me feel bad about myself, because he deserved it, but I wanted that and these are the things that would go through my head and torment me and then here it was two years, where I won an honorary ESPY which was pretty cool.

Norma: Awesome.

Nadine Vogel: we're gonna get you a T shirt says, I once was.

Joe Rhea: I actually had a T shirt made which says former quadriplegic.

Nadine Vogel: See there you go.

Joe Rhea: Yeah, I did.

Nadine Vogel: There you go.

Joe Rhea: I don't know if it's vanity or not. so.

Nadine Vogel: You know what it does it doesn't matter, because at the end of the day it was your experience.

Norma: Nice.

Nadine Vogel: It was your life experience and it's made you who you are today.

Joe Rhea: Absolutely.

Nadine Vogel: We can't deny that right we can't we and we shouldn't we shouldn't forget that I think that that's really important and it's probably a great note to end on since oh my gosh we are out of time, I never understand how 30 minutes flies the way it does.

Nadine Vogel: But um. Joe Thank you so very much. Again.

Joe Rhea: Thank you for having me.

Nadine Vogel: Again, JoeRhea.com right to.

Joe Rhea: R-H-E-A. It's actually Joe Rhee-ah.

Nadine Vogel: Rhee-ah.

Nadine Vogel: I can't, wow.

Nadine Vogel: Rhee-ah, I'm sorry R-H-E-A.

Joe Rhea: Now, you're not the first one that's butchered it.

Nadine Vogel: But shame on me becuase I asked and I still butchered it.

Nadine Vogel: But this would be the website to get your book, maybe if there's someone's out there interested in booking you as a speaker so please Thank you so much for joining us today.

Nadine Vogel: norma as always.

Norma: Can't wait to get that book. Yeah great great show Thank you so much.

Joe Rhea: Thank you for having me.

Nadine Vogel: Thank you for joining us on another episode of disabled lives matter more than just a podcast we are a movement bye everybody.

Norma: be blessed.

Joe Rhea: bye.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates. The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advice, and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast. The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or listening device.

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Season 02, Episode 20 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Elaine Katz

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.

Nadine Vogel: Hello everyone and welcome to another amazing episode of disabled lives matter we are more than a podcast we are a movement and, of course, as always, Norma Stanley my amazing co host is joining me.

Nadine Vogel: Morning norma.

Norma: Good morning everybody. Great to see you.

Nadine Vogel: yeah so norma, we have an exciting show today, because we are going to be speaking with Elaine Katz. hey Elaine.

Elaine Katz: hey nice to be with you.

Nadine Vogel: i'm so glad you joined us so i've known elaine a really long time not they were old we just know each other a long time.

[Laughter.]

Nadine Vogel: She oversees Kessler Foundation's comprehensive grant making program and its communications department, so if that doesn't sound like a big enough job.

Nadine Vogel: Just to put it in perspective during her tenure at the at the foundation I think Elaine you've brought in you've had you've had like almost $50 million awarded. For the program.

Elaine Katz: Grants we've given out. yes.

Nadine Vogel: Oh my Gosh.

Norma: Yes, great.

Nadine Vogel: Right, I mean yeah so she's a force to be reckoned with so.

Nadine Vogel: let's get started. so Elain there are so many questions I have for you, oh my gosh um Well, first of all, just for those who are not familiar with Kessler, can you just give a little brief about what Kessler is and does.

Elaine Katz: Sure, so it's great to be with both of you.

Elaine Katz: And Kessler Foundation changes the lives of people with disabilities through medical rehabilitation research and funding our employment initiatives, our research works in the area of cognition and mobility for individuals with disabilities such a stroke and traumatic brain injury. muscular sclerosis.

Elaine Katz: And what we try to do is improve daily functioning and independence and we just by doing that we test new interventions and gather data which can improve the treatment, I head our Center for grant making as nadine mentioned.

Elaine Katz: we've awarded more than $50 million, or, as we say invested more than $50 million in organizations that.

Elaine Katz: work on, employment for people with disabilities we've done training grants we've done job creation, both in New Jersey, where we're based and nationally.

Elaine Katz: And we hope, by improving the participation rates of people with disabilities in competitive integrated employment and that's really key to us, and that by leveraging our dollars and human capital, we can really create some new ideas and models to move the needle forward.

Nadine Vogel: So I love that you said competitive.

Norma: Yes.

Nadine Vogel: integrated employment because you know, not all employment is created equal let's put it that way.

Nadine Vogel: So, but before I because, again, I have some questions but let's just start with that so when you say competitive and integrate let's be really clear what that means versus just let's hire people with disabilities.

Elaine Katz: Well, what we're trying to look at and what we hope for is yes, you may get an entry job.

Elaine Katz: That pays minimum wage which that's the competitive part that you're in the competitive workforce, but that also it's a position where you can move that you're not stuck in that position for a very long time, even if you're starting at a fast food.

Elaine Katz: position then hopefully you can move either within that organization or you can move to another position.

Elaine Katz: Working with people without disabilities that's the integrated part side by side and have the same opportunities training onboarding just like everybody else.

Elaine Katz: And I think it's really important that you know people with disabilities have the choice to move into jobs that they're interested in, we often don't see people with disabilities being asked what would you like to do where would you like to work.

Nadine Vogel: Absolutely and I think that you know, a big impact to this to it well for everybody, but especially people with disabilities is the everlasting covid.

Nadine Vogel: It just won't go away and specifically what i'd love to focus on.

Nadine Vogel: Is long covid right so long haul covid is a real thing.

Nadine Vogel: I believe that some of the aspects of it are protected now under the A-D-A and its impact, so therefore it's impacting employment can you talk about that a little bit.

Elaine Katz: Sure, so you know, in the beginning of the pandemic, the American University Centers on Disability, which is a A-U-C-D had estimated at that time they're probably 105 million Americans.

Elaine Katz: Who were going to be affected by covid either with disabilities.

Elaine Katz: or older Americans adults and what actually also fill in that group that people don't realize it's all the caretakers you know all the caretakers and families.

Elaine Katz: That were in shared living situations where people with disabilities were also really at high risk.

Elaine Katz: And we saw that really the highest proportion of that group with the initial hospitalization especially individuals from diverse communities, and you know as that progressed.

Elaine Katz: Now we've been in the pandemic with vaccines and everything else but it's a lot longer I think than anybody ever predicted.

Elaine Katz: And we're seeing the emergence of long covid or long haul covid whatever you want to call it, and really it's an umbrella term for all kinds of physical and mental disabilities.

Elaine Katz: health issues that happen after four months, so you may recover and then you know, four months, six months eight months later it's still kind of lingering and you know, according to the CDC.

Elaine Katz: They looked at it last November and there's at that time there were like three to 5 million Americans so roughly one in five Americans over. eighteen.

Elaine Katz: were affected by this, so you know it's really a real issue and it's a real issue being brought to the disability community.

Elaine Katz: Because there are questions, as you mentioned nadine. we just celebrated the 32nd anniversary Americans with disabilities, which you know that legislation was created to protect people with disabilities and all kinds of situations, but it's not really clear right now.

Elaine Katz: If covid is covered, although you know recently the Department of Justice and also health and human services.

Elaine Katz: came out with some guidelines that long covid long haul covid is covered under the titles of the A-D-A so you know it's very, very confusing and it's confusing to employers it's confusing to people.

Elaine Katz: And it's real moment for you know disability advocates who now all of a sudden have this whole new group of people who really are people with disabilities, who never consider themselves having disabilities.

Nadine Vogel: Right. right.

Elaine Katz: Now, disability can happen to anybody at any time.

Nadine Vogel: Right and and The thing is, if I thought about that right is and norma, you and I talk all the time that disabilities can happen to anybody at any time, but now I think people are start trying to believe it.

Norma: I think so. They have no choice but to believe it now.

Nadine Vogel: Right. they weren't believing us too much before so so as a result of covid some folks have been saying that you know there's there's tremendous opportunities for employment because of this remote work telecommuting.

Nadine Vogel: I'm mixed you know I thought and norma I would love to see what you think you know I always thought yes wow we've really come into our own now right but i'm finding that there are many organizations, I spoke with one yesterday.

Nadine Vogel: That said, they're looking to hire two people with disabilities one's part time one's full time they can't be remote, they have to be in the office and I was like really what, why are we back to that again.

Norma: Yeah.

Nadine Vogel: So Elaine I mean what are you seeing, with this.

Elaine Katz: Well, you know we did a survey of employees and people who are working with disabilities in.

Elaine Katz: 2015 and at that time you know we really asked a lot of questions and found people were just striving to work, so we know people with disabilities really want to work.

Elaine Katz: And they're overcoming barriers by training and all kinds of things education that they would go to work and in 2017 we did a supervisor study and there was.

Elaine Katz: You know nothing like remote work and at that time, we found part of that study that was difficult to ask for accommodations and get accommodations.

Norma: Yup.

Elaine Katz: But you know still people with disabilities want to work and employers wanted to hire them now, we have this whole beginning of the pandemic and everybody was remote so.

Elaine Katz: The idea that employers could make these accommodations for everybody, and we always knew they were doing standing desk and I have to computer screen, I mean.

Elaine Katz: they're always doing some sort of extra things for employees who asked, but now you know they actually help people set up.

Elaine Katz: computer systems at home and cameras and phone system, some of them gave money towards that so.

Elaine Katz: We knew remote work could be an equalizer for everybody, but now, as you mentioned we're seeing people go back to the office so in including my own office, where you know we have four days a week in, and we have one day a week we could work remotely but.

Elaine Katz: You know, so we saw when you work remotely that you know the transportation was minimized people who needed breaks during the day could easily take it.

Elaine Katz: But now that employers are asking everybody to come in, you know what's going to happen and let's be clear remote work wasn't for everybody, but.

Nadine Vogel: Right.

Elaine Katz: it's really mean for people with disabilities, because all of a sudden if you're working I mean forget the fact that want you in the office but.

Elaine Katz: If.

Elaine Katz: The opportunity to work remote and you're one day, and most of your team is in right or you know how are they going to evaluate your performance are you going to be seen as a less. person.

Elaine Katz: Working because you're not visible there's a great quote quote that came across by a from an Australian report that says.

Elaine Katz: presence without participation can be more isolating the no presence at all so.

Nadine Vogel: I agree.

Elaine Katz: You could be physically present without being included and that's what you know we're really you know are you going to get promoted are you going to get the right projects.

Elaine Katz: And it's you know now we know we could all after accommodations but now the question Now the question is going to be, do you have to be in the office and why are employers, insisting on it, which you know that's still to be determined, I think.

Norma: Isn't there a big issue with people finding gaps to begin with, so you would think that they would look towards the community of people with disabilities to try to fill some of those gaps in employment and Labor shortages, that they are finding in so many different industries.

Elaine Katz: So that's that's kind of the question is that.

Elaine Katz: You know, employers want to find people they want they're looking at people who've been formally incarcerated returning citizens they're also looking at people with disabilities all kinds of population they never considered before.

Elaine Katz: But they don't often know where to find the people where to get the people.

Elaine Katz: We recently did a project with the SHRM Foundation, which is the philanthropic arm of the Society for Human Resource Managers.

Elaine Katz: And what that is is really creating a certification calling Employing Abilities at Work, and that was developed with global disability inclusion and we funded the project and what it enables employers to do is have a place to, and it's free you don't have to be a member of SHRM.

Elaine Katz: And you can go there and take this 10 hour course with seven modules and really learn how to onboard people with disabilities.

Elaine Katz: And it really helps employers and those in HR really get some training.

Elaine Katz: On a very individual basis, and also but, more importantly, what I think it's going to be good for is people in the field, so what we haven't talked about is.

Elaine Katz: Those nonprofit agencies who place people with disabilities oftentimes they don't know how to work with employers.

Elaine Katz: They don't always have the means to hire consultants, like nadine, to to work with them to work with employers, so this free platform will allow them to go in and really understand how a corporation on boards people hires people, so I hope they take advantage of this as well.

Nadine Vogel: Well that's it that's a great spot for us that we are going to move to commercial break, so, nobody leave everybody stay tuned we'll be right back with my co host Normal Stanley and I guess Elaine Katz, be right back.

Voiceover: And now it's time for a commercial break.

[COMMERCIAL] If you're familiar with Springboard Consulting Disability Matters Events. You won't want to miss out on the 2022 Disability Matters Asia-Pacific Conference & Awards Live-Stream. It's happening November 9 & 10, and it's being hosted by Manulife. So, don't miss out! Visit www.consultspringboard.com for more information. Again, that's www.consultspringboard.com for more information.

Voiceover: And now back to our show.

Nadine Vogel: Hello everyone welcome back to disabled lives matter, this is Nadine Vogel your co host along with Norma Stanley.

Nadine Vogel: And today's guest is Elaine Katz from Kessler Foundation so Elaine you know it's interesting before before break what you were talking about with you know, providing training and giving guidance.

Nadine Vogel: What, we keep hearing from companies is flexibility it's all about flexibility we're completely flexible but we're really not.

Nadine Vogel: So, and I think you know, for what you said earlier and I hear it all the time, is that people with disabilities, you know.

Nadine Vogel: have always been hesitant to disclose because of you know, have they'll be treated they'd be the first to go, so now to your point before about if they're the ones asking to work from home and everybody else's in the office you know it just further can isolate them.

Nadine Vogel: So what is this definition, I may we have a new definition of flexibility, I don't know what do you think.

Elaine Katz: I think we do have a new flexibility of a new definition of flexibility, I also think that flexibility is really here to stay, I mean I just see that, on my own staff and people working at Kessler Foundation, with or without disabilities we're just named as one of the best places to work.

[Yay!]

Elaine Katz: and I'll find out our ranking in the fall, but what part of it, you know some of the comments we heard is that, yes, you know.

Elaine Katz: The place is clean and people were good during covid and all those kinds of nice management stuff but still some of the comments were yes we'd still like flexibility so.

Elaine Katz: I you know I think the mindset coming out of covid and you see the great resignation too I mean people, all of a sudden people are up ending their lives they're deciding to move to new positions, which is a whole nother discussion, we can have nothing at nonprofit agencies.

Nadine Vogel: Yes.

Elaine Katz: But I think people really want flexibility in their lives, and I think it's spilling over not only their personal lives but into their business lives, and I think it's still to be determined what's the definition right now we see an employer by employer.

Nadine Vogel: Right.

Elaine Katz: You know, and I also heard, there was an article recently and.

Elaine Katz: One of the national newspapers that talked about its regional so in some regions of the US.

Elaine Katz: or in smaller cities like Pittsburgh, people are all in our offices, but in like New York and L.A. people are still not in their offices, so it may really depend where you're living and what's the philosophy in the place you're living.

Nadine Vogel: yeah that is that I hadn't thought about it, regionally, have you norma I.

Norma: yeah that's true that's interesting.

Norma: I was in.

Norma: New York and it seemed to have more people coming back to the office than here in Georgia tell you the truth.

Nadine Vogel: Really.

Norma: Interesting. yeah.

Nadine Vogel: So that that is that is interesting, but you know this this great resignation and norma you brought this up earlier as well.

Nadine Vogel: You know I think we're seeing it in certain industries, more than others and it's not that i'm not concerned about all industries, I am but i'd like to focus on what about.

Nadine Vogel: Elaine, are we seeing this on the nonprofit side that the agencies that are serving directly serving the disability community, my concern is, I feel like we're starting to see less staff in those places, and that is a concern.

Norma: Very much so.

Elaine Katz: yeah I mean we talked about in the beginning, that they were the the direct service professionals those individuals who really have expansive work working. mainly.

Elaine Katz: With individuals with developmental disabilities can work often times 24/7 in an individual home, in a group home.

Elaine Katz: You know around the clock care they're providing and socialization they're driving people to appointments oftentimes they're working developing.

Elaine Katz: skill building so those individuals are actually more during covid a lot of them left during covid or a lot of them, you know, took a break from work and then came back, but that industry had been in a crisis before covid.

Nadine Vogel: Got it.

Elaine Katz: We saw low wages, very little training high expectations high hands on and they were trusted I mean, these are the trusted people who are working with loved ones family members.

Elaine Katz: And they really have a good deal responsibility, so you know, in the great resignation direct service professionals really you know we're leaving a lot.

Elaine Katz: mcdonald's we're paying higher wages or some other fast food chains Lowes you know all the home buildings, you know retail is just much higher fast food was much higher and people were leaving.

Elaine Katz: And these agencies when direct service provider has a service and they're connected to a nonprofit agency that agency is require getting a reimbursement from the state usually for.

Nadine Vogel: Right.

Elaine Katz: Some service delivery those rates have not increased so with inflation, the cost of running a nonprofit organization which we often don't think about the cost individually of direct service providers living with inflation.

Elaine Katz: You know, there was there were a lot of people leaving I know in New Jersey we're seeing a lot of rotating staff.

Elaine Katz: So people in other positions other vocational vocational supervisors job developers they're kind of moving to another agency, also in this time because of increased opportunities so some of the smaller agencies are losing staff to bigger service agencies.

Nadine Vogel: Do you think we're going to be able, do you think we're going to see like a consolidation, where you just you know those little nonprofits just aren't going to be able to survive and it's going to roll up to the bigger ones.

Elaine Katz: I think that happened during covid and there was always some reports of agencies closing and consolidating and with inflation everything else, I think, so I mean what covid.

Elaine Katz: You know, at least I know New Jersey and somewhat nationwide what covid really pointed out to is the nonprofit agencies serving people with disabilities.

Elaine Katz: Especially on the employment side we're not prepared to do remote services and we had provided a lot of emergency grant funding during the first year of covid and we bought a lot of computers, you would think we were buying computers for clients no we're buying equipment for staff.

Elaine Katz: The staff did not have the right kind of a computer or a camera to do a remote service delivery, you know a lot of client a lot of people with disabilities now have phones.

Elaine Katz: But you know it's hard to do a service delivery or teach something if you yourself are using the phone as well.

Nadine Vogel: Right, well, we found, I can tell you that you know at Springboard we got a lot of calls from parents working at our clients companies who said, who have children with disabilities.

Nadine Vogel: And during covid, you know the children weren't getting their physical therapy their speech therapy occupational therapy and they were trying to get the therapist to do it, you know via zoom and you know, especially with a child, with a disability, if you're not touching them, you know.

Norma: Yes. It is not the same.

Nadine Vogel: It was very, very difficult and you know my older daughter, who has disabilities was in the hospital for actually a few months, and just the nursing shortage.

Nadine Vogel: And what they were able to do, and you know it used to be they didn't like, especially if it's an adult child for the parent to like stay in the hospital room.

Nadine Vogel: They were like oh no please you know stay forever because we took some of the burden off what they had to do and it's just a little scary actually it's very scary especially in a hospital environment.

Elaine Katz: Well that's true, and then you know we talked earlier about long covid so right, you have all of these people entering a disability service delivery system that weren't there before and with staffing shortages and increasing costs and access.

Elaine Katz: You know it's hard for people to get services and then for people who already are there feel like somebody else's crowding them out in.

Elaine Katz: Some aspect, because now everybody's competing for limited services where so it's it's really going to be challenges for our health care and service delivery system, as we move forward.

Nadine Vogel: Yeah.

Nadine Vogel: It is, I want to switch gears a little bit while we still have some time to talk about your reports you put out these amazing research reports, the national trends and disability employment and i'm wondering if you could give us the latest and greatest.

Nadine Vogel: For what's what you're seeing.

Elaine Katz: Right, so our.

Elaine Katz: nTide report, which we call that for short.

Elaine Katz: it's really a joint report that's produced by Kessler Foundation and the University of New Hampshire and it comes out the first Friday of the month, which is.

Elaine Katz: Jobs Friday and it looks at numbers from the Bureau of Labor statistics in Washington.

Elaine Katz: But they're not identical to them, but it takes their statistics and merges male and female, and looks at how it affects people with disabilities and without disabilities, if you really want the latest and greatest and you just tuned in for tomorrow, because tomorrow.

Elaine Katz: I don't know when this is airing but every first Friday of the month is jobs right.

Elaine Katz: So you know, in June of this year in our report, we saw that employment really increased slightly.

Elaine Katz: From May to June for people with disabilities, but it really has been reaching an all time high you know we talked about the great reset.

Elaine Katz: resignation but during covid and continuing we have seen increased Labor participation rates of people with disabilities, why because oftentimes they were in essential jobs.

Elaine Katz: They were cashiers they were working in supermarkets and working in fast food they were delivery, so they stayed working oftentimes.

Elaine Katz: You know, over the past couple of years and, in fact, their participation rate now is almost where it was pre covid it actually it is where it was pre covid compared to when you look year over a year, with people without disabilities.

Nadine Vogel: okay well that's that's promising.

Norma: Wow.

Elaine Katz: Yes. It's very promising.

Norma. And moving in the right direction.

Nadine Vogel: in the right direction and and and are there, certain industries certain job types like are we seeing any trends there.

Elaine Katz: You know, we don't look at that type of data.

Elaine Katz: So I really can't answer that question but.

Elaine Katz: What we do think is that part of the high participation is also because of inflation.

Elaine Katz: We suspect, because you know it's encouraging everybody in a family who can work can work, whether you can work part time or full time you know anything contributed to income will help when you know you have high inflation.

Nadine Vogel: yeah absolutely and what about we had talked to a couple years ago about you know people with disabilities in college.

Nadine Vogel: And i'm wondering if you feel that covid has had an impact on that at all.

Elaine Katz: You know I think with remote schooling that individuals with disabilities who might not have considered higher education are.

Elaine Katz: Looking at it, we really haven't done much work in that, but you know before covid we did a survey and it did show that.

Elaine Katz: young adults with disabilities who are going through both a two year school and a four year school were taking advantages of all the opportunities.

Elaine Katz: Just like students without disabilities, the only real difference is they weren't focusing on the tech fields like science math.

Elaine Katz: What they call the STEM fields and that could be a real problem, as the job growth in the U-S, as we see it, it is, is becoming highly technical.

Elaine Katz: You really can't almost do any job, including you know punching in your timeclock that doesn't use a computer.

Elaine Katz: So it's really important to get those types of skills we're coming out with a new survey in the fall that's really step up to our supervisor survey we do it in 2017.

Elaine Katz: we're looking at the data, right now, but what that survey did was trying to compare how supervisor looked at hiring people with disabilities pre covid.

Norma: Wow.

Elaine Katz: To what happened duringcovid so that gets to what we talked about earlier is the accommodation questions are they onboarding more people are they finding more people what's happening in the workplace, so we're really excited hopefully that will come out in October.

Elaine Katz: Which is Disability Employment Awareness Month.

Nadine Vogel: yeah.

Nadine Vogel: One of the things that you bring up about you know the technology, I had a conversation goes back a few months ago with an occupational therapist she works with adults with disabilities.

Nadine Vogel: And one of the conversations we were having was how do, how do we get the O-Ts, the P-Ts, the speech therapists.

Nadine Vogel: When they start working with the children, the young children to incorporate technology more into the therapies.

Nadine Vogel: So that at a very young age, these children are getting more comfortable with technology, you know and and almost keeping up with their non disabled peers if that's possible.

Nadine Vogel: So I don't know if that's like a thing or not I mean she and I were just having a conversation Elaine your thoughts on that one.

Elaine Katz: I know they are using some technology, as you mentioned, I have a friend who's a speech pathologist and during covert she did have a home setup and she was working with.

Elaine Katz: You know the client she had who are children who are on computers and using computers and part of what she was doing was teaching some you know usage of computers so.

Elaine Katz: I do think some of the bigger hospital systems, I know we've done our research side have used some robotics and you know computer type things as part of therapy, but that really goes to.

Elaine Katz: You know, teaching I there is actually computer training for girls young girls there are you know it's more computer clubs and getting.

Nadine Vogel: Right.

Elaine Katz: young children with disabilities mainstreamed and we're talking about integrated into some of the boys-and-girls clubs and other places where they do have some training and teach courses after school or on the weekends in technology.

Nadine Vogel: I think it comes down to you know we've been talking about the workplace right and accommodations I think it comes down to these these after school programs that you're talking about and clubs.

Nadine Vogel: getting them to understand accommodations of the students, so we can get them, you know it's just like we found in colleges right students with disabilities don't aren't exposed as much as their non disabled peers to internships.

Nadine Vogel: Right so again it's, we have to push the needle but start it I guess at a younger age, I am hating to say this, but we are out of time I that that half hour just kind of flew.

Nadine Vogel: So Elaine any any last words of wisdom you.

Nadine Vogel: You want to leave our listeners with.

Elaine Katz: I think it's important that we, when we talk about competitive integrated employment, that we do focus on that and try to provide as many opportunities of that.

Elaine Katz: But when we're talking about integrated or inclusive, I think the idea of including people with disabilities in all aspects of the Community, besides employment to your point about socialization and clubs in government that's also very important.

Nadine Vogel: Okay, well, thank you so much for joining.

Nadine Vogel: us today.

Norma: Yes. Thank you so much.

Nadine Vogel: If someone wants to get in touch with you, or with Kessler, how should they go about doing that.

Elaine Katz: They can just email me at E-K-A-T-Z ekatz@kesslerfoundation.org.

Nadine Vogel: Great well, thank you.

Nadine Vogel: norma. Thank you.

Norma: Thank you so much.

Norma: Another great session

Norma: Another great one. yes.

Nadine Vogel: Absolutely. And to our listeners, thank you for joining us on another episode of disabled lives matter we are more than a podcast we are a movement see you next time everybody bye bye.

Norma: Be blessed.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Season 02, Episode 19 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Sheri Byrne-Haber

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.

Nadine Vogel: Hello and welcome to the podcast disabled lives matter i'm Nadine Vogel one of your hosts I am joined by my fabulous co host Norma Stanley.

Norma: Hello everyone.

Nadine Vogel: And we want everyone to remember that this is more than a podcast, this is a movement and I absolutely think that you will agree, after hearing today's guest Sherry Byrne that you are going to agree with us so sherry, welcome to the show.

Sheri Byrne-Haber (she/her): Thank you, glad to be part of the movement.

Nadine Vogel: Absolutely absolutely and you know you have done so much, I think you have helped create the movement in many ways, so maybe we could start just tell our audience a little bit about your background because it's I think it's fabulous.

Sheri Byrne-Haber (she/her): Sure, so i've been in the field of digital accessibility for about the last 12 years before that I was an advocate for the Deaf.

Sheri Byrne-Haber (she/her): kind of an eclectic educational background I started off in tech with a degree in computer science.

Sheri Byrne-Haber (she/her): And then I became a lawyer, thinking that I was going to do, intellectual property and then I ended up going into accessibility, because of my daughter losing her hearing, so I do have a congenital mobility problem I use a wheelchair for getting around longer distances.

Sheri Byrne-Haber (she/her): But yeah i've been you know living eating sleeping and breathing the disability movement literally since I was born.

Nadine Vogel: Literally exactly so you know let's just get right into this People with disabilities are discriminated.

Nadine Vogel: They are discriminated in so many different ways and and what's so disheartening to me.

Nadine Vogel: You know my company springboard, this is what we do right we help companies mainstream people with disabilities in all aspects so that they're not discriminated against, but I feel like you know we barely move the needle.

Nadine Vogel: So, can you talk to us about at all the ways, you see, people with disabilities discriminated.

Sheri Byrne-Haber (she/her): Well, you know some of it is unconscious bias and some of it is a little bit more overt.

Sheri Byrne-Haber (she/her): You know if you don't buy accessible software you're inherently discriminating against your employees with disabilities, because they may not be able to use it.

Sheri Byrne-Haber (she/her): People with the hiring managers that are frequently not trained on how to interview people with who are neuro diverse.

Sheri Byrne-Haber (she/her): In particular, you know if you're looking for I contact a firm handshake that's not going to work for hiring people with disabilities that's automatically going to discriminate against them.

Sheri Byrne-Haber (she/her): You know, some of them are subtle discrimination i've seen is especially in the job of employment area, which is where i'm particularly active.

Sheri Byrne-Haber (she/her): Is an applicant tracking systems if they're looking for gaps in resumes and automatically rejecting those people that's automatically going to.

Sheri Byrne-Haber (she/her): impact, people with disabilities, because they're going to have more likely to have gaps they're more likely to be laid off they're more likely to have medical conditions that force them to leave their jobs and and deal with the conditions before they can go back to work.

Sheri Byrne-Haber (she/her): You know and and some of it is just you know, out of fear I can't tell you how many times i've been in the grocery store in my wheelchair, and you know the you know some child points to me out of curiosity and the mom says Oh, shhh and they run to the next style right, you know they you know.

Sheri Byrne-Haber (she/her): People are indoctrinated to a very early age, that disability is negative disability is bad and they are not taught that people with disabilities matter or the people with disabilities can thrive.

Norma: That's right.

Nadine Vogel: Absolutely I mean Norma and I both have adult daughters with disabilities and we see it all the time don't we norma.

Norma: Absolutely it's it's maddening.

Nadine Vogel: yeah and you know this issue you bring up the unconscious bias I, I have a just a personal thing that.

Nadine Vogel: I think biases I don't believe in unconscious bias, I think people consciously are bias, but.

Nadine Vogel: It may be because of that mom that told them just to shush right how they grew up how they the inexperi inexperiences they didn't have it doesn't mean they're trying to be mean it's just that they don't know like you said they.

Nadine Vogel: don't have the training and the understanding and you know it just you know it, for me, even I I went through this issue with elementary schools were when they started teach teaching foreign languages and teaching like Chinese and German and Italian why aren't you teaching sign language.

Nadine Vogel: Why why isn't that.

Sheri Byrne-Haber (she/her): it's taking a long time for sign language to get actually recognized as.

Sheri Byrne-Haber (she/her): A foreign language credit.

Norma: Absolutely.

Nadine Vogel: Exactly.

Sheri Byrne-Haber (she/her): But it wasn't until some of the major schools like Princeton the Ivy league's like Princeton and Cornell started doing it that everybody else went oh well if they're doing it, we should do it too.

Nadine Vogel: Absolutely absolutely so I want to come back to your comment about the applicant tracking systems, so do you have a solution to that.

Sheri Byrne-Haber (she/her): um I don't know that I do you know the the software companies are you know, like.

Sheri Byrne-Haber (she/her): JESSICA rabbit they say well we're not bad it's just how we're used that makes us bad and you know you hear that from social media you hear that from from a lot of different companies, you know I would prefer that companies not offer options that allow people to discriminate. right.

Nadine Vogel: right right.

Sheri Byrne-Haber (she/her): That you know that's that's my way of thinking, you know short of that all you can do is education or you know, a big lawsuit.

{Laughter.}

Sheri Byrne-Haber (she/her): that's that's the one, nothing will teach a company faster.

Sheri Byrne-Haber (she/her): That what they're doing is wrong than having to shell out a bunch of money on legal fees and settlement agreements because it turns out what they did was wrong.

Norma: right.

Nadine Vogel: right.

Nadine Vogel: And then, and you know what's interesting to me that when I see that i'm always like Okay, so now, the other companies, especially at least within their industry they'll get it now I still don't see that.

Sheri Byrne-Haber (she/her): They will, or they won't most most litigation doesn't go to trial and most end up in confidential settlement agreements so unless it's the E-E-O-C or the Department of Justice suing I would say, probably only about I mean my best guess would be maybe one in 100.

Nadine Vogel: Ugh.

Sheri Byrne-Haber (she/her): lawsuits filed you ever hear about.

Norma: Wow.

Nadine Vogel: Norma this is not good.

Norma: not good at all, you know, I was in a situation not to long ago where.

Norma: Somebody was going to a restaurant a brand new restaurant and the way the seats were situated my daughter's wheelchair we could not maneuver to the table that it was a birthday party and I sharing with the manager, can you please you may need to provide me these things.

Norma: And its a manual chair, can you imagine if it was a power chair.

Norma: And I found out from some of the guests who were there, who I guess didn't know we were coming no you're supposed to call you're supposed to call the restaurant first. I said, no you're not.

Norma: We should be able to come into any.

Norma: restaurant, we want to.

Norma: yeah they actually thought that's what we should have done, and we were the one messing everybody's party up. Because.

Sheri Byrne-Haber (she/her): Oh well, let me tell you a story them so two days ago.

Sheri Byrne-Haber (she/her): So recently.

Sheri Byrne-Haber (she/her): I was flying back from Denver.

Sheri Byrne-Haber (she/her): I called the shuttle company they advertise on their website, they were A-D-A accessible, I called the shuttle company and they're like oh yeah we're gonna have that shuttle ready for you, when you get here.

Sheri Byrne-Haber (she/her): I got there you know, of course, they only had one shuttle right, not all the shuttles were A-D-A.

Sheri Byrne-Haber (she/her): accessible and it was at the airport and the guy decided to take lunch.

Norma: Oh wow.

Sheri Byrne-Haber (she/her): Right so um you know that you know, this is the reason why and and, yes, I have filed a complaint with the Department of Justice and with the company and flamed them on Twitter and everything else.

Sheri Byrne-Haber (she/her): But you know, sometimes you feel like you're you're spending your entire life doing that.

Nadine Vogel: Don't that.

Sheri Byrne-Haber (she/her): because nothing was made for us and people rarely think to include us.

Norma: Absolutely.

Nadine Vogel: And it's true and I think you know, because you were talking earlier about employment issues, even if we think of the interview process I would love to hear your comments and your thoughts.

Nadine Vogel: On just the discriminatory practices that set people with disabilities up for failure, right from the interview.

Sheri Byrne-Haber (she/her): Well, you know, first of all interviews, I think I can only speak from tech because that's where and a little bit from previously being a lawyer interviews tend to be really long blocks of.

Sheri Byrne-Haber (she/her): Contiguous time you know, sometimes i've heard of blocks of interviews as much as six hours that can be very difficult, if you have a fatigue related disability or if your neuro diverse.

Sheri Byrne-Haber (she/her): You know the biggest problem I see is that.

Sheri Byrne-Haber (she/her): People who are doing the interviewing can't put themselves in the position of the person that they're interviewing so they don't understand.

Sheri Byrne-Haber (she/her): What a compen compensatory skills or things that people have developed like you know I might be interviewing.

Sheri Byrne-Haber (she/her): The the place, I happen to work is a 2.2 miles square campus right so somebody might look at me and my wheelchair and think well I don't know how she's going to get around here.

Nadine Vogel: right.

Sheri Byrne-Haber (she/her): um so you know there's there's.

Sheri Byrne-Haber (she/her): there's discrimination what wherever you go there's discrimination in how the interviews are set up, you have to request captioning frequently it's not automatically turned on.

Sheri Byrne-Haber (she/her): The.

Sheri Byrne-Haber (she/her): You know people who are.

Sheri Byrne-Haber (she/her): Do or neuro diverse or who have disabilities frequently you know have competence issues from the way that they've been treated in the past, so it's very difficult to come into this.

Sheri Byrne-Haber (she/her): You know projecting confidence and so when when people are ranking the candidates, at the end of the day, unless it's a job, where they're specifically looking for somebody with a disability, you know frequently we're we're ranked.

Sheri Byrne-Haber (she/her): Lower in the priority list, yet the other issue is many people hide disabilities, yes 70% of disabilities are invisible.

Sheri Byrne-Haber (she/her): And there's a great Harvard Business Review study about how that impacts.

Sheri Byrne-Haber (she/her): Employment in that the employees are much more anxious and much less engaged because they're worried about being outed.

Norma: Yes.

Sheri Byrne-Haber (she/her): and i'm making air quotes around that word.

Sheri Byrne-Haber (she/her): about having a disability, and then you get into the catch 22 where because you haven't disclosed you can't get accommodations so you can actually get fired.

Sheri Byrne-Haber (she/her): For the the performance issues associated with your disabilities, in order to get protected, you have to.

Sheri Byrne-Haber (she/her): make it known and ask for accommodations and that's a very difficult step for some people to take and it's a very difficult step.

Sheri Byrne-Haber (she/her): For people who grew up outside of countries that have protections for people with disabilities, I work with a lot of people from India, for example, they have a very different concept of disability in India.

Nadine Vogel: Yes.

Sheri Byrne-Haber (she/her): Then we do in the United States.

Nadine Vogel: Absolutely. I've I've we've done a lot of work in India and you right it's very I mean from the language to the accommodation expectation everything.

Sheri Byrne-Haber (she/her): Yeah.

Nadine Vogel: very, very different so for those listeners that have yet to disclose to their employer and maybe because they don't even know what they can ask for what's possible.

Nadine Vogel: Right, because we have listeners in different countries, you know, do you have like I hate to say, like the top three or top five or things that you want to make sure folks know they can ask for.

Sheri Byrne-Haber (she/her): So accommodations typically break down into three categories there there's processes there's tools and there's facilities right so processes are things like.

Sheri Byrne-Haber (she/her): You work from home full time or you work six hours a day, instead of eight hours a day um or you get you know your time off from three to five every other Wednesday for some type of medical related appointment.

Sheri Byrne-Haber (she/her): tools are, for, if you have dyslexia, for example, you might want grammarly.

Sheri Byrne-Haber (she/her): grammarly is a great tool to help people who are writing documents make sure that everything is in the correct order and grammatically correct but it's about $100 and it's not I mean it's cheap for a company it's not necessarily cheap for an individual.

Sheri Byrne-Haber (she/her): So there's lots of tools, you can ask for screen readers or magnifier or anything having to do with with software related to disabilities and then finally there's facilities modification so. any facility

Sheri Byrne-Haber (she/her): that was built.

Sheri Byrne-Haber (she/her): Before the Americans with Disabilities Act, and so, as they are renovating buildings.

Sheri Byrne-Haber (she/her): they're adding in electronic door openers they and they added them to the buildings that I use the most frequently so that just you know it's not required under the A-D-A but I was really struggling and.

Sheri Byrne-Haber (she/her): And so they did add those to make it easier for me to get in and out of the building and get in and out of the restrooms.

Nadine Vogel: Right right well that that's perfect because I think people really sometimes just are not sure what they can ask for or they're uncomfortable because they don't see anyone else, having that disability right and having that accommodation.

Sheri Byrne-Haber (she/her): Right well accommodations are supposed to be confidential so.

Sheri Byrne-Haber (she/her): Unless.

Sheri Byrne-Haber (she/her): Somebody talks about it.

Sheri Byrne-Haber (she/her): you're not necessarily going to know what other people are doing.

Sheri Byrne-Haber (she/her): And then the other thing is you don't necessarily get what you asked for you, if you ask for a BMW solution, but it can be solved with a you know Prius you're going to get the Prius right.

Sheri Byrne-Haber (she/her): And, but because the point of an accommodation is is solving the problem it's not necessarily getting the most expensive thing available to solve the problem.

Nadine Vogel: Exactly.

Nadine Vogel: Perhaps, so we need to move to a commercial break, but when we come back Sheri I really want to get a little I hate to say controversial, but I really want to start talking about.

Nadine Vogel: Discrimination, as it relates to some of the more recent changes we've seen in our country, such as the undoing of Roe V Wade so for everyone stay tuned don't go anywhere, this is going to be an exciting discussion.

Nadine Vogel: Be right back.

Voiceover: And now it's time for a commercial break.

[COMMERCIAL] If you're familiar with Springboard Consulting Disability Matters Events. You won't want to miss out on the 2022 Disability Matters Asia-Pacific Conference & Awards Live-Stream. It's happening November 9 & 10, and it's being hosted by Manulife. So, don't miss out! Visit www.consultspringboard.com for more information. Again, that's www.consultspringboard.com for more information.

Voiceover: And now back to our show.

Nadine Vogel: Hello everyone and welcome back to this evenings episode of disabled lives matter we are more than a podcast we are movement, I am here today, as always with my co host Norma Stanley.

Norma: It's great to be here.

Nadine Vogel: Yeah. And today, we are talking with Sheri Byrne Haber and we've been having a fabulous conversation about you know just people with disabilities in the workplace.

Nadine Vogel: Some of the discriminated discriminatory practices that we see all kinds of accommodations folks plans for, but we want to change the topic a little bit.

Nadine Vogel: Um Sheri is the author of a popular medium blog called this This Week in Accessibility and in this blog she summarizes legal cases and issues facing people that implementing accessibility programs.

Nadine Vogel: One of the things and how Sheri, and I actually first engaged with with some of the latest legislative changes to Roe V Wade.

Nadine Vogel: And we know that this is a topic that people are very feel very strongly on both sides um today's conversation is going to be about the impact on women with disabilities so Sheri take it away because I just this just tears at me.

Sheri Byrne-Haber (she/her): Sure, so you have to start with the baseline that women with disabilities already experience discrimination and healthcare.

Sheri Byrne-Haber (she/her): women with disabilities are more likely to be in state funded insurance programs, which are just generally lower levels of quality.

Sheri Byrne-Haber (she/her): There is discrimination associated with weight, there is discrimination associated with you know, being a person of color who's a woman with a disability it's all intersectional it all adds up over time.

Sheri Byrne-Haber (she/her): But then, in particular with with with the Dobbs decision, which is the one that overturned Roe V Wade.

Sheri Byrne-Haber (she/her): You know there's a couple of really important statistics to understand for women with disabilities, you know, first of all women with disabilities are five times more likely to be sexually assaulted.

Norma: Yup.

Sheri Byrne-Haber (she/her): Then women without disabilities, especially women with intellectual issues.

Norma: Yes.

Nadine Vogel: Yes.

Sheri Byrne-Haber (she/her): mental health issues so that's a pretty significant concern.

Sheri Byrne-Haber (she/her): So they're more likely, you know to be pregnant, not through any desire of their's you know some women with disabilities have conditions that they don't want to pass on to their children, so they may have some autosomal dominant.

Sheri Byrne-Haber (she/her): Genetic condition, where the.

Sheri Byrne-Haber (she/her): Child is 50/50 whether or not they're going to have the same medical condition that they do, and so that's a significant issue.

Sheri Byrne-Haber (she/her): For there but there's all kinds of other side effects as well, so you know we I hear a lot there's this woman on on linkedin that I follow I'm spacing out on her name.

Sheri Byrne-Haber (she/her): But every post that she has she says when a black women are four times more likely to die in childbirth, why aren't we doing anything about this well women with disabilities are 11 times more likely to die in childbirth, why aren't we doing something about that.

Nadine Vogel: Oh, my gosh.

Sheri Byrne-Haber (she/her): and then again intersectional a woman of color with a disability is probably even higher than than the 11 times more likely.

Nadine Vogel: Oh my.

Norma: Absolutely.

Sheri Byrne-Haber (she/her): women with disabilities are more likely to be in poverty, and so they are not always able to take care of children, even if that was.

Sheri Byrne-Haber (she/her): Even if they didn't want to end the pregnancy and then you look at the there's all kinds of secondary side effects so there's discussion about how does the Dobbs decision impact.

Sheri Byrne-Haber (she/her): In vitro fertilization that's going to directly impact women with them infertility conditions which can be tied to disabilities.

Sheri Byrne-Haber (she/her): Women with rheumatoid arthritis are already reporting that they can't get their prescriptions refilled.

Sheri Byrne-Haber (she/her): One of the drugs that's most commonly used it's the cheapest drug out there, totally safe been on the market for like 30-40 years it's one of the drugs that they use to induce miscarriages.

Nadine Vogel: {gasps.}

Norma: Wow.

Sheri Byrne-Haber (she/her): and so pharmacists are refusing to refill it.

Nadine Vogel: Ugh.

Norma: Ugh.

Sheri Byrne-Haber (she/her): in the trigger states.

Norma: Domino effect.

Sheri Byrne-Haber (she/her): Some of them have had these prescriptions for years and years and years, and you know I can speak from personal experience when Covid started.

Sheri Byrne-Haber (she/her): Two of the drugs that I was on from my rheumatoid arthritis all got confiscated for Covid trials and I had to go off my rheumatoid arthritis drugs cold turkey, and I was miserable, it is not a good place to be.

Norma: Wow.

Nadine Vogel: That's that's.

Norma: That's. staggering I mean, I know that my daughter who's 33 and you know sexual activity is not on her radar but just even getting a G-Y-N exam is challenging.

Sheri Byrne-Haber (she/her): Sure.

Norma: because she's in a wheelchair, and you know she's just not going to sit for that.

Sheri Byrne-Haber (she/her): The doctor's office don't have joists.

Norma: They don't.

Sheri Byrne-Haber (she/her): to transfer people they don't have tables that can hold more than 250 pounds, you know it's it's.

Sheri Byrne-Haber (she/her): You know, there are starting to be more regulations that are coming out from the government specifying that but then, yes, the same thing as a disabled bathroom right.

Sheri Byrne-Haber (she/her): You know, you can be compliant again making air quotes and have an accessible bathroom but if there's somebody in there with a stroller and i'm out here with a wheelchair trying not to have an accident that doesn't help me that much so, you know, having a single accessible room.

Sheri Byrne-Haber (she/her): Is that you know compliant, but not sufficient.

Nadine Vogel: Right, so if wow. what, if anything is being done or can be done behind the scenes, right now, relative to the Dobbs decision in helping folks and the government understand the implications here.

Sheri Byrne-Haber (she/her): You know it's a really good question, I know that some of the national disability organizations are starting you know fundraising campaigns and letter writing campaigns, I've talked to people.

Sheri Byrne-Haber (she/her): who have not been able to get their drugs refilled and pointed them to Mark Cuban's website which does sell methotrexate, which is the drugging question.

Sheri Byrne-Haber (she/her): and told them look get an out of state prescription get it filled here and then get it mailed to your House now will the state state government of South Carolina eventually pass laws, making even mailing of drugs.

Sheri Byrne-Haber (she/her): To their state illegal possibly what happens if you don't have the money to pay for the outside methotrexate and for the outside referral.

Sheri Byrne-Haber (she/her): So you know fundraising advocacy campaigns that's that's really where we're at right now, I mean the decision is only slightly over two weeks, and so.

Sheri Byrne-Haber (she/her): I think people are still not really understanding that this is more than about you know stopping people from having you know abortions when fetuses are viable, this is, this is about controlling women and controlling women through through all these.

Sheri Byrne-Haber (she/her): Side effects that I discussed.

Nadine Vogel: Right well, and you know shame on the big pharmas. I mean they should be willing to take a stand and say I mean don't they have any role in this.

Sheri Byrne-Haber (she/her): You know I hadn't thought about it from that perspective um a lot of the drugs in question have been around for a while and so they're generic.

Sheri Byrne-Haber (she/her): And and they're not big profit centers I know there's only one manufacturer of the injectable methotrexate because when they had a quality control problem.

Sheri Byrne-Haber (she/her): Due to a hurricane, all of a sudden, there was a shortage and they asked all the people who were on it, can you switch to the pill form, so that we can use this special injectable.

Sheri Byrne-Haber (she/her): For kids with leukemia where the injectable was the only thing that they could take they couldn't take the pills so that's a problem because.

Sheri Byrne-Haber (she/her): You know there's just not not a lot of money in generics, the money is in you know what they're advertising on TV.

Nadine Vogel: Right well you know what I mean so many things bother me.

Nadine Vogel: You know this whole issue you know let's talk let's back it up to Covid right, so when government was pushing you know the Covid vaccine right and people were saying well I don't want to take the vaccine my body my choice blah blah blah, how is this different.

Nadine Vogel: How is this different.

Sheri Byrne-Haber (she/her): I don't I can't I can't split that hair, you know I just don't understand the people who can.

Sheri Byrne-Haber (she/her): retain the cognitive.

Sheri Byrne-Haber (she/her): You know clash between those two positions.

Nadine Vogel: Right.

Sheri Byrne-Haber (she/her): Right, you know my body my choice with Covid vaccine and your body my choice.

Sheri Byrne-Haber (she/her): with pregnancy.

Nadine Vogel: Right it just. It makes no sense and and and obviously this they're not thinking women with disabilities, because they're not even thinking women in general, but to your point well, first of all, the statistic that you quoted women and with disabilities 11 times more likely to die in childbirth.

Nadine Vogel: I gasped at that.

Norma: yeah.

Nadine Vogel: I just got to that. you know I think of my older daughter, who you know talks about having a child some day she's 31 she has you know all these disabilities and i'm thinking oh my.

Nadine Vogel: gosh now is that because of the quality of the treatment of the level of care that they're getting.

Sheri Byrne-Haber (she/her): I don't think it's necessarily tied to that I think it's um you know, women are more likely to have autoimmune conditions, especially women of childbearing age.

Sheri Byrne-Haber (she/her): That is linked with blood clots, and so I think a lot of the you know I actually my deaf daughter's third grade teacher died.

Sheri Byrne-Haber (she/her): A couple of days after her third child was born from a blood clot that came from an autoimmune condition that she had so I suspect that I suspect, maybe I hope that it's it's not necessarily people deliberately discriminating against us it's more that um you know we we are higher risk.

Sheri Byrne-Haber (she/her): in general.

Sheri Byrne-Haber (she/her): You know I have type one diabetes it's very difficult to manage your diabetes when you're pregnant.

Nadine Vogel: Right right oh my gosh that is.

Nadine Vogel: And I also think this issue of you know, women with intellectual disabilities.

Nadine Vogel: Um the you know succumbing to rape and in all of these just awful issues right, much more so than someone who doesn't have an intellectual disability.

Nadine Vogel: You know that what was the situation just recently of the 10 year old that got raped, a 10 year old child and they wouldn't allow her to have an abortion she had to go across state line.

Norma: Yep.

Sheri Byrne-Haber (she/her): Or the there was a story, a few years back, about a woman.

Sheri Byrne-Haber (she/her): I want to say it was in Arizona, who was in a coma.

Norma: And yes, I was just thinking.

Norma: About that yeah.

Norma: yeah she was raped by one of the.

Norma: People who work there.

Norma: yeah she end up getting pregnant and giving birth, you know.

Sheri Byrne-Haber (she/her): With no prenatal care so you know that.

Sheri Byrne-Haber (she/her): You know.

Sheri Byrne-Haber (she/her): that's that's another thing you know people with disabilities, we don't like going to doctors, because we do it more than everybody else so.

Nadine Vogel: So so help us here Sheri, as you know, we only really have a couple minutes left for our listeners, who have disabilities for our listeners who don't have disabilities what what kind of guidance should we be giving people to help move the needle and change some of this.

Nadine Vogel: All of this.

Sheri Byrne-Haber (she/her): The Dobbs Dobbs did not make abortion illegal.

Sheri Byrne-Haber (she/her): Right Dobbs said it was up to the States to decide whether or not abortion was legal and then of course we had all these states with trigger laws that said if Roe V Wade got overturned automatically abortion became legal in that state.

Sheri Byrne-Haber (she/her): So what people have to do is they have to either work within the confines of their state trying to get out there and elect people who are going to overturn those laws internally with their states or they have to move to States that are are going to protect women's rights.

Nadine Vogel: But that you know the problem is that changes by the day and they think one state is OK, and then you see the needle.

Sheri Byrne-Haber (she/her): It can alter over time and it's all about who's in power.

Sheri Byrne-Haber (she/her): You got to get out there, and you got to vote if you're if you're to disabled to go to the polls, then you gotta vote, you know you got to register absentee and and vote absentee because without that we've got nothing.

Nadine Vogel: yeah.

Norma: And they're trying to change all those laws also.

Norma: You know how you can actually get the vote in.

Sheri Byrne-Haber (she/her): Well that's that you know that's that's the group in power, trying to hang on to their power.

Norma: Um, hmm.

Nadine Vogel: but yet resulting in another discriminatory practice.

Norma: Yes.

Nadine Vogel: It right, I mean it kind of just keeps coming back it's like full circle so well.

Nadine Vogel: I hope that all of our listeners that you all heard Sheri you heard the things that we're talking about today and that you will take action on Sheri if someone wants to reach out to you, relative to your blog what's the best way to do that.

Sheri Byrne-Haber (she/her): So I just moved my blog to substack and my blog is called Access Ability so.

Sheri Byrne-Haber (she/her): Those two words um with with the A for ability, instead of the I, which is how it's spelled for accessibility and i've got a fairly unique last name Byrne hyphen Haber so you can find me on linkedin fairly easily as well, where I was just named a top voice for social impact, by the way.

Norma: Awesome.

Nadine Vogel: i'm not surprised.

Nadine Vogel: i'm not surprised and.

Sheri Byrne-Haber (she/her): Well. i'm really glad that linkedin recognized disability, as part of social impact that that was.

Sheri Byrne-Haber (she/her): That was.

Sheri Byrne-Haber (she/her): That was my biggest takeaway from that.

Nadine Vogel: And and for our listeners if you're not following Sheri right now go do it, I I have started to, and I think the the points that you make the conversations that you start, just like what we're having here so important, so Sheri. Thank you so very much for joining us.

Norma: Yes. Thank you very much.

Nadine Vogel: and

Nadine Vogel: I wish you the best of luck in.

Nadine Vogel: Everything that you're doing and I would very much like us to stay in touch.

Norma: Yes, please.

Sheri Byrne-Haber (she/her): Appreciate the invitation and thanks for chatting with me.

Nadine Vogel: Absolutely norma another great episode. Se you on.

Norma: Yes. Thank you again and we just you know, we look forward to bringing you more content like this moving forward so disabled lives matter and don't you ever forget it.

Nadine Vogel: Absolutely. Alright everybody take care bye bye.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Season 02, Episode 18 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Nadine Vogel & Norma Stanley

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.

Nadine Vogel: Hey Norma.

Norma: Hey Nadine. Great to see you. You're gorgeous.

Nadine Vogel: Well, thank you dear.

Norma: Good morning gorgeous.

Nadine Vogel: It's unintentional, but I'll take it if I can get it.

{Laughter.}

Nadine Vogel: Toall of our listeners Norma and Nadine here to welcome you to another episode of disabled lives matter we are more than just a podcast we are movement, and let me just tell you today's today's discussion is going to move you.

Nadine Vogel: Right norma it's gonna move you.

Norma. Absolutely.

Nadine Vogel: So for those who don't know I have an adult adult daughter, with significant disabilities that she was born with. She's 30 years old and actually in really good health but.

Nadine Vogel: She fell into some ill health and needed surgery so she went in for surgery, and it was supposed to be they said two to three days Okay, not a problem.

Nadine Vogel: Well, that turned into 10 because of complications went home two days came back for another five complication.

Nadine Vogel: went home again and then had even more severe complications and went back for another 12 so my rule with both my girls as my younger daughter has issues as well, is that, if they ever go in the hospital I move in with them and I don't leave until they leave.

Norma. Um hmm.

Nadine Vogel: And norma.

Norma: i'm sure you have the same feelings.

Norma: Oh, absolutely.

Nadine Vogel: Right, I think everybody in the hospital needs that advocate with them.

Nadine Vogel: Even if they are a great advocate, but especially us, you know our daughters, they have disabilities, they really need us there.

Norma: Yes. Absolutely.

Nadine Vogel: We went to the administration of the hospital, we got in writing.

Nadine Vogel: special permission, I want to get some writing ahead of time, so they couldn't kick me out after visiting hours.

Nadine Vogel: You know I had I had to give a clinical reason they wanted clinical reasons why I had to stay so, I gave it to him, they they approved it so not a problem we were there, but I gotta tell you, you know i'm going to write a book someday that just says, I got shit to say.

Norma: {Laughter.}

Nadine Vogel: Cause when it comes to.

Nadine Vogel: Well, I should say, that about a lot of things, but when it comes to disability, being a parent of a child, with disability and especially against the medical care norma I bet you to have shit to say.

Norma: Absolutely and like your daughter my daughter is generally healthy oftentimes when they have some medical issues, the attention and the detail to making sure that they find whatever it is not there.

Nadine Vogel: Right. I mean.

Nadine Vogel: It goes from like one extreme to the other, I mean, and this is not to say we haven't had some really great experiences. with the surgeon.

Nadine Vogel: and other things, but oh my gosh oh my gosh you know at one point, and I'm all over the place right, but on one of the admissions they thought Maybe she had on one of these infectious diseases, so they have protocols for you we had a gown mask the whole bit so one of the key.

Nadine Vogel: Things to know if you have that is that the person has like uncontrollable diarrhea.

Nadine Vogel: Well for two days, three days, she hadn't even gone to the bathroom so that should be a sign.

Nadine Vogel: She doesn't have that.

Norma: Exactly.

Nadine Vogel: She finally does go to bathroom the nurse has the sample sends it down.

Nadine Vogel: The nurse comes back up a few hours later, and says you're gonna kill me.

Norma: Oh, oh.

Nadine Vogel: I labeled the sample wrong, we have to start all over again.

Norma: Are you serious. No way.

Nadine Vogel: yeah we can't let her out of this sterile. I was like i'm gonna kill you really and, by the way, just you really think she has.

Nadine Vogel: Oh, my gosh then we had and by the way in one wing of the hospital, for I would say, you know 20 of the 30 days it was absolutely fabulous it's actually an oncology floor.

Norma: Hmm.

Nadine Vogel: And they were just amazing there, but we were in more of the general floor ay,ya,yay we had a we had a nurse one night, who are one day she was a she was only like one day a week, and she was so flustered so flustered.

Nadine Vogel: And, to the point of she got wind that you know I knew a lot about not i'm not a licensed nurse or doctor I could just play one on T-V.

Nadine Vogel: So she learned that I had a lot of knowledge, she got so flustered with things at one point, like she was giving me stuff to give to Gretchen orally not a problem, she. hands me a

Nadine Vogel: freakin thing a syringe and says, you know, can you put this in the I-V and I was like.

Nadine Vogel: Okay, really, really no.

Nadine Vogel: I cannot she goes i'm just so flustered i'm busy i'm like okay not my problem, not my problem and the thing that really drives me let, let me just say what really drives me crazy and I know this is for anyone out there, that has a disability, that is living with a lifelong disability.

Nadine Vogel: Is if you go into a teaching hospital, where they have the residents.

Norma: Um, hmm.

Nadine Vogel: Now, I have the utmost respect for what they have to go through to become doctors but I refer to the residence is the minions okay.

Norma: Yeah.

Nadine Vogel: Oh, my God, I mean they have to respect if someone has a disability, they're 30 years old, they have to respect this person really knows their body.

Norma: Yes.

Nadine Vogel: They know what they need they know if something is different right. so my daughter has issues with her veins I mean like really bad. issues.

Nadine Vogel: Where to get a vein, even just for blood, they have to use an ultrasound.

Norma: Oh wow.

Nadine Vogel: Special tech, they can only use the ultrasound and get it.

Norma: Hum.

Nadine Vogel: So.

Nadine Vogel: Bad veins oh everybody says that.

Norma: Oh.

Nadine Vogel: I know, everybody says that.

Nadine Vogel: But she gets a lot of blood test she knows I know.

Norma: Um, hmm.

Nadine Vogel: I don't just stick i'm really good i'm gonna look, we don't need the machine.

Norma: Oh.

Nadine Vogel: Right now, this is ready to second this back to the hospital and I said, you have a you have records, you could see we had to have vascular come in because of the veins.

Nadine Vogel: No no i'm good i'm good i'm like she's not a pin cushion so I had this damn nurse, who said we don't have anyone in the E-R right now, who can do the ultrasound so we're going to send up a paramedic who really knows how to do.

Nadine Vogel: The how can in the entire E-R, this is a major major hospital doesn't know how to use the ultrasound really.

Nadine Vogel: They bring one of the E-R doctors over he says, you know I think I can do this i've tried I'm not great, but I tried it before i'm like you're gonna try this.

Norma: You think.

Nadine Vogel: My daughter is so sick you're going to add this so.

Nadine Vogel: Let him do it said can't do it, even with the ultrasound so I said well nobody's touching her so I don't care if we have to sit here until tomorrow, this is a huge hospital someone has an ultrasound someplace you're going to do it.

Norma: Um, hmm.

Nadine Vogel: So we're waiting there, and all of a sudden this doctor this walk by a few different times says, are you guys Okay, do you need anything.

Nadine Vogel: I said no we're not okay I explain the situation he says well i'm head of the E-R he said, I know how to do that I train the doctors on how to do that, we have the ultrasound down the hall.

Norma: What.

Nadine Vogel: So I.

Nadine Vogel: Your nurse is saying he goes you maybe you miss understood.

Nadine Vogel: Like no you think because she has a disability, she miss understood what was being said you think cuz i'm like the crazy mother i'm misunderstanding, I don't think so, I said you get that nurse over here now.

Norma: Um, hmm.

Nadine Vogel: And I made him get her over.

Nadine Vogel: And said could you explain to him what you told us and confirm that you said blah blah blah blah.

Norma: Right.

Nadine Vogel: She got really quiet.

Nadine Vogel: And I said.

Nadine Vogel: Or did you just lie to us because you think she has disabilities she's not going to know the difference.

Norma: Right. Oh my God.

Nadine Vogel: So she says, well, I wasn't we have protocol and I can't just get the head of the E-R just because you want somebody that's right.

Nadine Vogel: I said you have to respect your patients number one and not assume that if someone has a disability or looks like to have a cognitive disability that they don't know what they are doing.

Norma: And yet the advocate is right there, her mother.

Nadine Vogel: Right, right. I was crazy. so he's like you know what i'll take care of it and so she was like you know protocol this and that, so I can't i'm not allowed to just go to here so then you guys have a bigger issue and I told the E-R doctor I said so, you could tell she lied to me.

Nadine Vogel: hey do you think she can validate why she liked to me, ultimately, she reports to you and works for you, so what are you going to do that.

Norma: Hmm.

Nadine Vogel: Hello.

Norma: Okay.

Nadine Vogel: Right, so that was the first admission. The second admission was also a disaster, but that was the second admission for the first one, we came in and it was straight to surgery.

Nadine Vogel: The third admission come back in through E-R the surgical team is waiting they know who we are, but you have to go through the E-R first anyway.

Nadine Vogel: So I was really excited we get there, the head of the E-R different guy says, I read all the notes, I know you know we have to, we have to get a line in her I know she's really a hard stick he said i'm going to get someone who's really good with the ultrasound.

Nadine Vogel: Great they learn the guy comes with the ultrasound.

Nadine Vogel: So I think he stuck her four times, even with the ultrasound he couldn't get it.

Norma: Wow.

Nadine Vogel: Right, so I said we're done not doing this anymore, so he said, let me get the head of the E-R. Fine get the head of the E-R. Head of the E-R says.

Nadine Vogel: I think I can do this, let Let me try i'm like, why are you trying I said put a damn line in her neck right put a central line.

Nadine Vogel: Oh, we have you know their standards we can't just put a central line in because there's risk of infection, I was like well how much risk is there to keep sticking my daughter who's in severe pain with 101 fever.

Norma: Yes.

Nadine Vogel: Developing sepsis from a surgery.

Norma: Jesus.

Nadine Vogel: Really.

Norma: Um, i'm so sorry.

Nadine Vogel: But then I said call vascular team down, let them do it they can do it they've worked with her before oh that's what we call they won't come down they don't think it's an emergency, we need to determine and they leave at three 3:30 and it's three o'clock so you know.

Norma: Oh, my goodness.

Nadine Vogel: Again, like do you treat all your patients like this, or just patients that have disabilities.

Norma: Okay.

Nadine Vogel: And maybe you think crazy mom is here and.

Nadine Vogel: I was crazy, can I just tell you, in the end they stuck her eight.

Nadine Vogel: Times eight. different times.

Nadine Vogel: Black and blue all over.

Norma: Oh my Goodness.

Nadine Vogel: And remember. she just got out of the hospital so she was already black and blue.

Norma: Yes.

Nadine Vogel: And then he said all right we're gonna do a central line I was like so what i've been asking for for hours.

Norma: all the time.

Nadine Vogel: He said, well, we have to meet criteria so what's the criteria almost kill the patient doing what you're doing so you can do that.

Norma: Isn't that's something.

Nadine Vogel: I don't feel like you do this to everybody.

Nadine Vogel: Unbelieveable. Yes.

Norma: What did he say I mean, how do they justify that.

Nadine Vogel: We say Oh, we have to justify it because it's that's our rules it's criteria, and I said I think that's yours i'd like to see, I said, can I see it in writing, it has to your hospital everything has to be in writing and documented can I see the documentation.

Norma: Um, hmm.

Nadine Vogel: We don't just keep that out, I mean.

Nadine Vogel: I run the E-R I know what it is.

Norma: OK. Hmm.

Nadine Vogel: OK. So.

Nadine Vogel: You go through all of these crazy things.

Nadine Vogel: Why, you came to the hospital in the first place.

Norma: yeah It makes you really incredibly nervous about having to go.

Norma: To the hospital.

Nadine Vogel: Absolutely.

Norma: I have a girlfriend she just came out and she she has issues she doesn't have disabilities but she does have a lot of health issues, and if you don't advocate for yourself and tell them.

Norma: about your body and what's going on and what you know about handling and what you can, and you know your blood type and all these things they don't really even read the notes. Not too long ago I actually had to go to the emergency room I had swallowed a chicken bone. {slight chuckle}

Norma: And I told them, you know, and throat was all sore and I told them that what had happened they didn't put that in any of my notes and we're treating me as if I had a heart attack they wanted to give me an aspirin they want to take all this different stuff. They didn't read the notes. I told them what had happened.

Nadine Vogel: Right.

Norma: And they never put it in the notes so they're assuming because I was feeling chest pains that it was.

Norma: A possible heart attack.

Nadine Vogel: Right.

Norma: How really scary is that.

Nadine Vogel: Absolutely, And you know like, there are certain drugs Gretchen you know my daughter can't take because of allergies and so it's like they don't believe her or she was exaggerating so tell me precisely well, what was the reaction and how long ago, did you have that reaction and.

Norma: Hmm. Wow.

Nadine Vogel: When she was going in for surgery so she spent three months in neonatal intensive care unit and she's a lot of medical trauma right in her years.

Nadine Vogel: So. it's very upsetting when she goes in she's very nervous about going for surgery.

Norma: Sure.

Nadine Voge: So I said you need to give her enough medication in pre op.

Nadine Vogel: So that she's out because if she sees she take her in the O-R and she's seeing everything it's really bad.

Nadine Vogel: We know what we're doing and I said look she has a lot of anxiety, she has post traumatic stress that's all medical related you know we know what we're doing.

Nadine Vogel: You know and when I finally and I said oh my God, this is 500 times, you are the medical expert I don't take that away from you i'm my daughter's expert and Oh, by the way, she's her own expert.

Norma: Exactly.

Nadine Vogel: So we have to, we have to come together and collaborate and listen.

Norma: Yes.

Nadine Vogel: Now i'll tell you i'm just on so many things, but I will say fast forward 3rd admission we're getting discharged.

Nadine Vogel: Where i'm sitting with her waiting for the you know the resident to do all of the you know all the medications right.

Norma: Yeah.

Nadine Vogel: Give us the orders to go home, this is so funny that the charge nurse comes in the room and hands me her cell phone and she says the doctors on the phone for you and I said for me why.

Nadine Vogel: So the resident gets on the phone, he says.

Nadine Vogel: Before I write these orders, I want to go through, one by one, all the medications I want to make sure that you're on board that i'm in the right medications the right dose and I was like oh my gosh mission accomplished I have trained one resident.

Nadine Vogel: Out of the gazillions that are out there on how to do this because I will tell you check this out first she was on she developed fluid around her heart as one of the complications.

Norma: Hmm.

Nadine Vogel: So. she needs heart medicine.

Nadine Vogel: we've go home, and this was after the first admission we refilled the medication and we noticed that it says, I think it says two pills a day.

Norma: Hmm.

Nadine Vogel: And she was in the hospital she was getting one.

Norma: Okay.

Nadine Vogel: So nobody said anything that changed.

Norma: Right.

Nadine Vogel: But I was all nervous so.

Norma: Hmm.

Nadine Vogel: So I tell the pharmacy and they said well that's the order so like all right, so I had her so my daughter, called the cardiology department three times left messages with the issue we didn't get a call. This is a.

Nadine Vogel: Major hospital so okay let's call the surgeon's office, because it was the surgeons resident that wrote that order.

Nadine Vogel: We don't hear. So we go into the hospital we're in the E-R and the surgical team comes down and the first thing I said was I said, you know before we get any further, I said, I have a question and we explained what happened.

Nadine Vogel: So one of the doctors and he's such an idiot I actually told his boss the senior surgeon, I actually thought he was a resident he's such an idiot.

Nadine Vogel: So, because he seems like he knows enough like he's still in training.

Norma: Right.

Nadine Vogel: So I asked him about the heart medicine so his first reaction was.

Nadine Vogel: I don't know i'm not a cardiologist you need to call them we don't we don't deal with that and I said well this doctor's name is the doctor on your surgical team who wrote. The prescription.

Norma: Hmm. Um, hmm.

Nadine Vogel: So I hope you know about that.

Norma: Okay.

Nadine Vogel: And then we and Gretchen explains that you know the difference and he's like.

Nadine Vogel: I don't know about this area, what do you want to take one did you want to take two.

Norma: Huh.

Nadine Vogel: That's medication, that borders on medical malpractice.

Nadine Vogel: Did you just say that to my daughter.

Norma: wow.

Nadine Vogel: Is it because she has disabilities, and your like well whatever

Norma: Yeah, exactly.

Nadine Vogel: Maybe it is and maybe it isn't.

Nadine Vogel: but either way, I wanted to lose my mind.

Norma: Absolutely. Even like you said borders on malpractice and doesn't make any sense, and that's what's so so scary about it because, like you say.

Norma: You know you're daughter has disabilities, but she's perfectly capable of you know, sharing she knows herself she knows her body, she knows, and she has you who knows, so why would they even doubt.

Nadine Vogel: I mean really there's almost no words and then we had a situation where all this happened a few times so she has issues with swallowing so we know like major narcotics like you know you when she's under anesthesia they have to be careful right.

Norma: Um,hmm.

Nadine Vogel: So she stays away when she's in pain from things like.

Nadine Vogel: morphine because it can shut everything down.

Norma: Sure.

Nadine Vogel: she's in pain and she asked for Motrin.

Nadine Vogel: and she said maybe you could just give me like you like three motrin, like something a little stronger like a strong version of motrin.

Norma: Yes.

Nadine Vogel: We don't have an order for motrin, but we can give you morphine.

Norma: What.

Nadine Vogel: i'm like.

Nadine Vogel: Okay, we have an opioid crisis in this country.

Norma: Yeah.

Nadine Vogel: Right. We have a drug crisis.

Norma: Yeah.

Nadine Vogel: You are giving people hard drugs, you have someone here who knows her body and is asking for motrin.

Norma: Um, hmm.

Nadine Vogel: And your pushing morphine.

Norma: Wow.

Nadine Vogel: I can't count how many doctors, and how many nurses. did that.

Norma: interesting.

Nadine Vogel: I was like morphine motrin which one.

Norma: Morphine. Isn't that addictive.

Norma: wow.

Nadine Vogel: And then, when she said she couldn't do the morphine and they're like well how about oxycodone i'm like.

Norma: Oh, my God.

Nadine Vogel: Now again The good news is Gretchen you know my daughter knows her body, and she knows, she knows the medications she knows the side effects, she was very clear with them when she could and couldn't do.

Norma: yeah.

Nadine Vogel: it's a gamble.

Norma: scary wow.

Nadine Vogel: And then, you know when she takes the drugs and she's like more out of it, and then it affects like her speech.

Norma: yes.

Nadine Vogel: Then you have a mask on the nurse has a mask on. right.

Nadine Vogel: So it's more difficult to understand her.

Norma: Yes.

Nadine Vogel: so again, it really occurred to me if I wasn't there because she would ask for something or they asked her a question and she'd respond.

Nadine Vogel: And what what like they didn't understand.

Nadine Vogel: and

Nadine Vogel: Okay, then find a way to understand, so instead they would just looked to me, I was there that was fine. What I wasn't there.

Norma: What if you weren't there.

Norma: Yes.

Nadine Vogel: Right. So, and so many of them I was like hello, you need to figure out to communicate with the patient.

Nadine Vogel: Yes, I went into the lounge down the hall, and I actually took a picture of it.

Nadine Vogel: I should, we should post it on here, because it was a photo of a poster that they have kind of all over the floors and it talks about language interpretation should anyone need it.

Norma: Um, hmm.

Nadine Vogel: It had every damn language on it, but do you know it didn't have sign language.

Norma: Wow.

Nadine Vogel: Not that my daughter understands sign language, but that wasn't the point.

Norma: That's not the point.

Nadine Vogel: Right, at this point, it really wasn't the point, it was just like.

Nadine Vogel: The point of this whole conversation we have to have the medical community understand that disabled lives matter.

Norma: yep.

Nadine Vogel: Right. And and just because someone is disabled does not mean they are less than.

Norma: that's right.

Nadine Vogel: That should not mean that communicating with them is less important.

Norma: that's right.

Nadine Vogel: Or that their outcome is less important, I will say from the senior surgeon his team, you know, he did not see her outcomes less important, but just in general, like. You know it was making me crazy.

Norma: Right.

Nadine Vogel: So when they come in every few hours and do the vitals, right. They do blood pressure, heart, temperature, and they do saturation you know and Gretchen's great I mean every single time, what is this number what is that number what is that number.

Nadine Vogel: So they finally got to realize that they had to turn the machine towards her when they did it so she could see it.

Nadine Vogel: And what I realized was unless you're asking they don't they don't want you to see it.

Norma: Um, hmm. They don't.

Nadine Vogel: They turn it towards them they don't even tell you what it is.

Norma: Right.

Norma: that's right and if you're not asking any questions they're not going to provide any information.

Nadine Vogel: Right. And, and you know my husband now we had 13 years of in home R-N care for my older daughter was 13 years my younger daughter was five years, so we had a period where we had R-N's around the clock for both girls in my house right so we've learned a lot over the years right.

Norma: Yes.

Nadine Vogel: Separate from hospital stays the R-N's trained us to do so, we know what questions to ask, we know what different levels mean and it's interesting because you have to get over this hump with these folks.

Norma: Yes.

Nadine Vogel: They almost look at you like, why do you know this, why are you asking.

Norma: Exactly they always miss trust, the ones who actually are educated about their own health.

Nadine Vogel: Yes, have you noticed that.

Norma: I have.

Nadine Vogel: And I'm just like.

Nadine Vogel: I not a doctor, but I play one on TV okay.

Norma: Um, hmm.

Nadine Vogel: I mean really so like when they did um cat scans or MRIs you know they'd say you know, so the results are, and you know you get the results in the chart online everything I said that's fine, I want to see the image.

Norma: Yes.

Nadine Vogel: And they're like well, I remember one one doctor I think we were still in the E-R maybe said, well, are you really going to know what you're looking at, and I said actually I can read a cat scan I can read an MRI.

Norma: Um, hmm.

Nadine Vogel: I can read an E-K-G yes I actually can.

Nadine Vogel: Any other questions.

Norma: i'm sure that's surprised him.

Nadine Vogel: Right, so when they did it.

Nadine Vogel: At one point, they did like a second cat scan of the lungs and so they weren't gonna show it to me and I said i'd like to see it, I want to see if the fluid is gone down and like they looked at me like and then they looked over to the doctor like and said is that okay.

Norma: No can she see that.

Norma: Right.

Nadine Vogel: And then I made a comment about where I saw the fluid going and part of the one collapsing, and it was like I like no one said anything because they were, how do we respond to her.

Norma: Right.

Norma: and have a sign in for patients right they said that we ought to have certain rights.

Norma: But they don't really expect you to know anything about your own health and if you do.

Norma: They want you to act like.

Norma: What they had you sign.

Norma: That you don't know anything about your own rights.

Nadine Vogel: Norma that that is exactly it because it's it's based on their criteria.

Norma: Yes.

Nadine Vogel: or their definition of rights and it's also based unfortunately on their bias.

Norma: Yes.

Nadine Vogel: You know that if someone visibly looks disabled.

Nadine Vogel: And actually if they think there's a cognitive disability at all, which which with Gretchen there is not, but if they think there is.

Nadine Vogel: They just go into like auto mode.

Norma: Um, hmm.

Nadine Vogel: Right. And the one thing, the one thing I love about the teaching hospitals is i'm on a mission when I'm there with Gretchen i'm on a mission i'm going to educate these doctors.

Nadine Vogel: And i'm not educating them on medicine. I'm I'm

Norma: Right.

Norma: You just wanna.

Nadine Vogel: i'm just curious did you find norma when when Sierra was young right when you had we were working with pediatric specialist it was different the pediatric specialists who work with kids with disabilities and they really know how to engage with the parent.

Nadine Vogel: And with the person with a disability.

Norma: Yeah, because they are dealing with babies mostly.

Norma: As you age it changes.

Norma: I don't know why.

Nadine Vogel: Like calling for it, you know so one of the doctor, she was calling for one of the specialist that's not a new patient.

Nadine Vogel: But the doctor, she was seeing retired, so he said, you need to see this one specialist she she at this point, she was losing a pound and a half a day.

Nadine Vogel: She called she explains the whole thing had surgery all this, I really need to be seen, well, we can try to squeeze you in in the middle of August now, this was like the first of June.

Norma: No way. Ugh.

Nadine Vogel: I said Okay, if this person loses a permanent half a day, between now and then you don't have to worry she'll be dead.

Norma: And they didn't notice that I mean.

Nadine Vogel: Well here's the response i'm really sorry but that's all we can do.

Norma: Oh my God.

Nadine Vogel: Oh my God, tell me that's not medical malpractice.

Norma: So, how did you change their mind.

Norma: Did you have like yelling and scream.

Norma: What I do is that I threaten to call the media.

Norma: You know, i'm getting ready to call ABC, CBS, you better do something.

Nadine Vogel: So here's what I, so I did that on one occassion.

Nadine Vogel: And here's what I got it got it so we're in Florida right and I got met with you know, during covid.

Nadine Vogel: A lot of people moved to Florida move so so we were already overcrowded with people who are aging and having to deal and everybody came down due to Covid and then they didn't leave, so now we have double and triple the amount of people with the same amount of staff.

Nadine Vogel: And i'm like.

Norma: Yes.

Nadine Vogel: I do understand that I do.

Nadine Vogel: But think about what you're saying to me.

Nadine Vogel: Just think it's like telling me okay she's bleeding to death, she may be has or we can see her in six hours, like, I mean it makes no sense.

Norma: None.

Nadine Vogel: Then it makes no sense, so what you know what you and then, so I went to some her other team of doctors to say.

Nadine Vogel: Can you do me a favor can you place a call for us here's what's going on in this office and they said no problem, but then they came back and told Gretchen we tried and they won't listen to us either.

Norma: So, can you imagine you're an advocate for your daughter, you are making sure and she's making sure can you imagine with people who don't know what to ask for and what to say how many people are basically dying.

Norma: Because they don't have people, who fight for them, and people who you know we can make them listen, because we know how to do that, but the ones who are really at their mercy that's a scary thought.

Nadine Vogel: We had a situation where, when they were trying to do all the sticks so she has some very contracted left arm and hand and she had surgery, when she was like five.

Nadine Vogel: And so, no needles nothing goes in that arm right, because we don't know how things are going to react, and I remember the head of the E-R saying.

Nadine Vogel: Well i'm going to go up high above the surgery we're not going to go anywhere near where she had surgery on the on the lower arm or the hand and I said well but isn't the upper arm connected to the lower arm.

Norma: yeah.

Nadine Vogel: I mean I don't have to be a doctor to know yeah this phone connected was used to be a song, I think we were kids right.

Norma: Okay yeah.

Nadine Vogel: you know. the ankle bones connected to the.

Norma: exactly.

Nadine Vogel: Things things travel, no no no i'm going to do it, like in a certain spot it's going to be fine, how do you know that are you a neurologist.

Norma: wow.

Nadine Vogel: I mean really I could, as you can tell, I am ranting i'm sorry to our listeners.

Norma: No.

Norma: But you need to you need to write.

Norma: An article about all of this.

Nadine Vogel: Oh i'm writing a damn book.

Norma: Absolutely a book, but at least start with an article um and wow what that's just crazy to me.

Nadine Vogel: Right and actually I do want to write an article, you know what even though was here in Florida, and I will go to.

Nadine Vogel: Any patients here. I want this in the New York Times. and the Wall Street Journal.

Norma: Absolutely.

Nadine Vogel: I want we need to change this.

Norma: Put an opinion piece they seem to use opinion pieces very quickly.

Norma: But definitely you need to write something about what you experienced you and your daughter because that's that's just inexcusable to me.

Norma: And it just shows from a from a you know a lot of bigger level that things have fallen through the cracks that should not be able to when it comes to our Community.

Norma: is bad enough with the general Community but in our communities, it's like we're just throwaways that's not going to happen for parents like us that's just not. going to happen.

Nadine Vogel: And there has to be research, by the way, I think it was done in Boston maybe a couple years ago and the doctors actually in this research and survey acknowledged.

Norma: Hmm.

Nadine Vogel: yeah they viewed patients with. disabilities.

Norma: Um, hmm.

Nadine Vogel: You know, differently um you know and then look the system, just the system anyway in teaching us the right, so you need something you go to your nurse your nurse sends an email or some communication to the. resident

Nadine Vogel: Right and then just wait for the resident to get back or the resident has to go to the other doctor like by the time you get what you need you know. God only knows.

Norma: Right.

Nadine Vogel: The other thing that made me a little crazy was they have computers right in the room and that's where when the nurse comes in that's who's on you know checking everything giving.

Norma: Yeah.

Nadine Vogel: The doctors in the morning when they do their rounds.

Nadine Vogel: I would assume and again this is just me, maybe, maybe some hospitals actually do it this way when they do their rounds they come in the room, the computer's right there.

Nadine Vogel: to write the orders anything comments changes, whatever do it when you there no they round with all their patients around the hospital and then they sit down and write the orders.

Norma: well.that's crazy, you could be dead.

Nadine Vogel: Thank you.

Nadine Vogel: Right you remember at nine in the morning, what you said to the first patient at seven in the morning.

Norma: That doesn't even.

Norma: no

Nadine Vogel: Right, and you know the funny thing is when the senior doctors there, and all the residents, I do laugh so he'll say you know, to do something and in unison, all the hands go down right.

Nadine Vogel: to write it.

Nadine Vogel: But it and I, you know i'm very well, I really don't have patience, but when it comes to this, I try not to yell and scream I really try to be calm.

Nadine Vogel: And so, one morning it was like just blowing up blowing up blowing up, and so the the surgeon came in, with his team of residents.

Nadine Vogel: And he saw I was like I was fuming and he said Okay, well, we gotta go I said no, no, you can't go, I have a list a mile long that we're going to address and we're going to address now.

Nadine Vogel: he's like I have to get the surgery, so I understand that, but you know what we already had surgery so we're we're ahead.

Nadine Vogel: in the order, and this is a major issue, so he Let he let.

Nadine Vogel: The team go, he said, all right, let me, let them go i'll be back in you know, in a few minutes, let me just do whatever it is here to do next, I said okay.

Nadine Vogel: I figured I wasn't gonna see him, for you know kind of him, but to his credit 10 minutes later he came back he came back by himself.

Nadine Vogel: And he said, you know nadine he said i've seen you every single morning right every single morning for days and said i'm I could tell you were really pissed off.

Nadine Vogel: And I said yes, I was and here's why, and I kind of you know just went through the litany of stuff and he said well that's why I came back and I came back by myself and again, to his credit.

Nadine Vogel: He picked up the phone right, while we were there, made a couple of calls Okay, but when I was mad about is he should have done this with the residents there because it would.

Norma: So he could teach them.

Nadine Vogel: Be a learning for them.

Nadine Vogel: Exactly

Norma: Exactly

Nadine Vogel: It's not just about teaching them clinical skills they have to have these other skills.

Norma: right.

Nadine Vogel: Ugh. I just.

Norma: well.

Nadine Vogel: It just makes me crazy.

Norma: it's just another thing to add.

Norma: To the litany of things that we have to do as advocates as parents. and as people who are.

Norma: Trying to make a difference in this crazy.

Norma: Space we call society.

Norma: And and healthcare is a major issue, I saw something on when I was doing a little research prior to getting on today about you know my you know mount Sinai hospital big hospital New York and they actually have something it talks about tips on you know communicating with people different disabilities.

Nadine Vogel: Yes, I've seen it.

Norma: It's pretty cool but those those are actually general things that everybody knows.

Norma: correct. It's not medically focused.

Norma: Exactly.

Nadine Vogel: And I gotta tell you and I know we're running at a time our listeners are probably like oh Nadine please stop.

Nadine Vogel: But, but the thing is is.

Nadine Vogel: The companies springboard right we work with corporations with hospital all kinds of institutions to educate to train it's all about mainstream people with disabilities.

Norma: Yes.

Nadine Vogel: As part of that for years years.

Nadine Vogel: i've tried to get major hospitals, especially the teaching hospitals to allow us to come in and deliver disability etiquette and awareness.

Nadine Vogel: To the residents to the new nurses right and we're always Oh, we don't have time no budget you know every reason why not, and it just frustrates the Dickens out of me, and especially with something like this, I just you know if you don't have enough stress.

Nadine Vogel: This just as like you said a whole other layer and and because of what I do professionally even more stress because i'm like I don't understand how I can get these institutions to understand how important this is.

Norma: It's they just don't care and we have to make them care.

Nadine Vogel: Right and they're in the business supposedly of caring.

Norma: You would think, the reality is, I mean you just experienced how much they don't.

Nadine Vogel: I know I know so anyway, I I thank you for letting me rant today Norma.

Norma: No. I appreciate it. I need to have you come back and do a little more ranting on my program. So I'll call you about that one.

{Laughter.}

Norma: Because this is such an important topic, people are dealing with on a daily basis nobody's really talking about.

Norma: In in the media in the you know there's so many things and I do my.

Norma: tips tools and conversations for busy parents of children with special needs, and this is a topic that we can discuss and just share your experience and really know that let people know that we're not putting up and we're not going to stop until they fix it.

Nadine Vogel: And again it's not the first hospitalization I you know.

Norma: It's not.

Nadine Vogel: I know how it goes, but the thing is, I would have hoped in all these years, things would have improved.

Nadine Vogel: And and they haven't.

Norma: that's the whole point.

Nadine Vogel: And there not you know, unless we go unless they allow a springboard someone to come in and really make some meaningful change change is not going to just happen.

Nadine Vogel: In the end.

Norma: No.

Nadine Vogel: right, it has it has to be, it has to be institutionalized you know they talk about all criteria have to stick so many times before we do this let's add this to that criteria.

Nadine Vogel: That they need to know so you know, I just want to challenge for anyone who is listening to this.

Nadine Vogel: If you know of someone who runs a medical school and nursing school and you can forward this to them and have them reach out, please do so if you are someone with a disability and has had similar experiences, or you have your a parent of someone with a disability share. Write in. Tell us.

Norma: Yes, please.

Nadine Vogel: If you are in the medical field.

Nadine Vogel: Yourself and you agree or disagree with what they're saying you know reach out to us we'd love to interview you include you in, and you know as i'm saying that.

Nadine Vogel: See that's where we should. I don't know is going to be willing to do that because we'll probably beat him up, but let me think about that, because that might be good to have some doctors on here. Some hospital.

Norma: Absolutely.

Nadine Vogel: administrators, or you know something like that.

Norma: Absolutely i'll look around too and see who we can find but yes please, we would love to get an understanding of their perspectives cause i'm sure I mean, I'm sure it's challenging in what they're dealing with you know all the pandemic.

Nadine Vogel: Right.

Norma: Fall out and all of that.

Nadine Vogel: I know.

Norma: But at the same time.

Nadine Vogel: But at the same time, we are here and we need them.

Norma: Yeah.

Nadine Vogel: Right well with that everybody, thank you for listening to my rant to Norma's. Norma's support of my.

Nadine Vogel: Norma will do another one where you can rant you pick a topic.

Norma: Okay {laughter.}

Nadine Vogel: And another great episode of disabled lives matter disabled lives really do matter, this is more than a podcast it's a movement it's an important one, and we look forward to talking with you next time bye bye everybody.

Norma: bye bye be blessed.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Season 02, Episode 17 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Ryan Neimiller

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.

Nadine Vogel: Hello everyone, this is nadine vogel your co host of disabled lives matter we are a podcast but actually we are more than a podcast we are a movement, and I am joined by the fabulous norma stanley my co host. hey norma.

Norma: Hey. Hi. How is everybody doing today.

Nadine Vogel: Well, I gotta tell you I am riding high high high high today and not because of a substance.

Nadine Vogel: But i'm riding high i'm riding high because we are interviewing Ryan Niemiller Ryan was born with a disability in both his arms, he is a self proclaimed cripple threat of comedy how cool is.

Nadine Vogel: that many of you may have.

Nadine Vogel: seen him on america's got talent, or some other world stage, because he is always on the road performing Ryan, thank you for joining us today.

Ryan Niemiller: Absolutely, thank you for having me I always love how people have to say self proclaimed because before you got to know who I am.

Ryan Niemiller: If someone just says he's the.

Ryan Niemiller: cripple triple threat they're going to be like what. ooh.

[laughter]

Ryan Niemiller: i've done that to people before when when they say that, like he's the cripple threat and i'll be like we just met how.

Ryan Niemiller: dare you who told you to call me that.

Nadine Vogel: Right and especially on a podcast called disabled lives matter right that would really be. interesting.

Ryan Niemiller: Exactly.

Nadine Vogel: So ah. you know, but you know what.

Nadine Vogel: i'm going to ask you about your childhood, and I'm going to ask you a bunch of questions, but before I do that talk to us about cripple threat of comedy. How'd that come about.

Ryan Niemiller: Yes, so that name originally um so i've done comedy now for about 16 years I have a background in theater But my main dream, when I was growing up was always to be a professional wrestler that was.

Ryan Niemiller: That was my first love of what performing.

Ryan Niemiller: Was.

Ryan Niemiller: was watching wrestling as a kid I fell in love with it, I still it's one of my favorite things in the world, to this day that I did not outgrow that.

Nadine Vogel: Like some people do I just love it.

Ryan Niemiller: makes me so happy so that was the name I thought of when I was going to be a pro wrestler and I trained to be a pro wrestler for about two or three months and it's really hard on the body it's not you know people always be like all that stuff's fake.

Ryan Niemiller: Like no it's scripted.

Ryan Niemiller: that's a very different thing there, there are beating the tar out of each other it's rough on the body.

Ryan Niemiller: But I loved the cripple name or the cripple threat name so much that I just kept it when I started doing stand up by this transition did that way and it's kind of stuck with me, ever since.

Norma: cool.

Nadine Vogel. it's a very stickable name, I like that.

Ryan Niemiller: Yeah I was actually shocked when I did america's got talent that they allowed me to refer to myself as that because you know they're they're very you know it's a big budget show that has a lot of advertising dollars in it.

Ryan Niemiller: So I was worried that we're gonna be like.

Ryan Niemiller: Because like when someone like me says cripple it's like empowering it's part of you know i'm using that word to empower.

Ryan Niemiller: myself when other people hear it, though.

Ryan Niemiller: You know able bodied people, or whatever you want to say when they hear a lot of people get like oh I don't know if this is.

Ryan Niemiller: OK, but fortunately, they Let me run with it and it worked out for me.

Nadine Vogel: Correct, no absolutely.

Nadine Vogel: So my question, Ryan is, you talked about your childhood wanting to be a wrestler what was that childhood like.

Ryan Niemiller: my childhood was very it's always hard when I say this, some people kind of turn an eye a little bit, but like growing up a lot of people assume like the disability would have been the hardest thing I had to deal with, but for me it was kind of the least of my concerns in a certain way.

Ryan Niemiller: But my parents did their best, but you know my dad had some issues with alcohol and stuff like that, so we were joking before we got on the air i'm an old trailer park kid that was kind of my upbringing.

Ryan Niemiller: We had six of us packed in a single wide trailer money was always difficult.

Ryan Niemiller: You know I didn't own a bed until I was in college just to kind of give you an idea of just sort of how it out worked for me, so you know that that part for me.

Ryan Niemiller: I think those were more of where my strength came from a lot of people always want to assume like oh I bet having a disability was hard i'm like no like surviving That was the hard.

Ryan Niemiller: Part. The disability it didn't help you know that had its own challenges, but for me it was like Okay, we got it we got to deal with all of this over here first so it's.

Ryan Niemiller: That the bright side of having a an upbringing like that, though, is that I know now as an adult when things are going better for me that, if anything, does happen, I can survive I got this you know. I might be wrong about but.

Nadine Vogel: Right.

Ryan Niemiller: We can get through.

Nadine Vogel: Well, and I think, certainly the humor helps right so when or how did you know that you were is not just funny but hysterical.

[laughter]

Ryan Niemiller: Well, thank you for that that your words, not mine your words.

Ryan Niemiller: For me it honestly was around the same time it's like you know age four or five it was part of that survival instinct that you kind of get you kind of pick up because my hometown was maybe 3000 people it's a little town called DeMotte, Indiana.

Ryan Niemiller: it's about as big as it sounds.

Ryan Niemiller: Just a really tiny little.

Ryan Niemiller: Farming town, and I was the only person who had anything like what I have you know, I was not.

Ryan Niemiller: amongst a lot of other disabled peers.

Ryan Niemiller: So to speak so and I think we all can remember this isn't just for people with disabilities, but all of us know, like you remember, being a kid kids are mean you know like kids are.

Nadine Vogel: They can they can be very cruel.

Ryan Niemiller: So I had to learn quick like i'm the only one that looks like this that makes me a target.

Ryan Niemiller: I got to figure out how to make sure I don't get bullied.

Ryan Niemiller: And I just luckily was born with this kind of just quick wit and once I sort of learned that like if I make the jokes first whether it was about me or if I roasted them, you know, in some way. first.

Ryan Niemiller: they'd be like oh he's really funny we like him we don't need to pick on him because he's funny.

Ryan Niemiller: And, and that was sort of originally it was survival it wasn't any thought that I, you know when you're five years old, I wasn't like i'm going to be on america's got talent, or whatever you know.

Nadine Vogel: [laughter]

Ryan Niemiller: It's just. Being funny makes me feel good you know, and when people laugh it's like it's being a good center of attention and then just as time went on, I was like oh.

Ryan Niemiller: I always when I say this, it always sounds more sinister than I mean it to, but if you're funny people will do whatever you want.

Ryan Niemiller: You know, like like if they, like you, and you can make them laugh they're more willing to like you know work with you, and once I kind of figured that out there is power in this sort of transition into comedy and then 16 years later we're here now.

Nadine Vogel: No that's that's so true, I mean my my daughter's my daughter's 31 and has a myriad of disabilities, and I can remember the terrible bullying and things that she had to deal with and it's.

Nadine Vogel: You know it's kids are mean. It's uh I don't even know how else to say that kids kids are just mean but but.

Nadine Vogel: My concern is that kids grow up they become adults and we have adult bullies as well, so i'm curious What was your experience at A-G-T relative to that.

Ryan Niemiller: For me, you know growing up, I you know I mentioned, I never really was bullied because I kind of figured out.

Ryan Niemiller: How to be the funny guy.

Ryan Niemiller: That's how I was good, so I never got bullied I had way more trouble with the adult version of bullying I think than I ever did as a kid and and i've never been i've never been concerned with anyone calling me names like when you're an adult and someone calls you a name, whatever like.

Ryan Niemiller: That that doesn't affect me.

Ryan Niemiller: Personally, but I was dealing more with the stuff that like you don't really know how to prepare for as a kid you know, like when I started getting into the workforce people not wanting to hire me because they assume. that.

Ryan Niemiller: Oh, you have a disability, you can't do these jobs, what I wanted when I started getting interested in dating you know it takes a very strong individual to be with someone with a disability, because it's a different world if they haven't experienced it before.

Ryan Niemiller: And for a long time, like.

Ryan Niemiller: I understand that now intellectually, now that i'm married and kind of gone through the journey, but when you're first just like hey I think she's pretty, why does she think i'm disgusting.

Ryan Niemiller: it's not my fault, you know you start to have these these thoughts that you're dealing with so that was a lot worse for me was getting into the real world, so to speak.

Ryan Niemiller: and learning that and and A-G-T for me was kind of the culmination of my journey of accepting all of that.

Ryan Niemiller: Because having.

Ryan Niemiller: You know this is something I always try to tell people with disabilities who might not have made it in the journey, where I have yet is I had to learn that it's okay to be angry about it.

Ryan Niemiller: Because that's because I think we're always told when we have disabilities it's usually well meaning but people will tell you just be positive just be happy.

Ryan Niemiller: You know everything will be fine and that started to make me feel like I would try to do that and things weren't.

Ryan Niemiller: Changing you know things weren't being different so It made me feel like I was a failure, like, I was doing something wrong like I was the problem and once I got to the age and like a point in my life, where I acknowledged like.

Ryan Niemiller: hey it's okay to have a rough day every now and then.

Ryan Niemiller: You can have a day, where you're.

Ryan Niemiller: You know where you're mad about having the disability, you know what i'm having the days, where, for whatever I call them my crippled days, where i'm just dropping stuff more than I normally do or for whatever it is, like the buttons on my jeans just will not button, no matter what I.

Ryan Niemiller: do so i'm wearing sweatpants.

Ryan Niemiller: Today, you know those things still happen, and even though i'm good like i've had to give myself permission.

Ryan Niemiller: To to be like okay today sucks I wish I didn't have this today and that's okay tomorrow will be a different day we'll tackle it again.

Ryan Niemiller: And once I kind of got that into my brain that it was okay to do that, that, let me really take off and then A-G-T was sort of the big kind of the crescendo of that it was the the final product of me getting there.

Norma: Awesome. Wow well, I mean you've done so much so, what is your style of comedy, what is your favorite form and who was some you know some of your role models.

Ryan Niemiller: So for me my general i'm a storyteller is what I do it's a.

Ryan Niemiller: little bit of it comes from laziness so yeah.

Ryan Niemiller: If I just tell jokes and stories that have happened to me in my life I don't have to sit and think okay What do people think is funny.

Ryan Niemiller: If I just tell you things that I. like.

Ryan Niemiller: You know, so my style of comedy is just keeping my my eyes and ears open and paying attention and be like oh this person did this, this is funny to me let's talk about it.

Nadine Vogel: Right.

Ryan Niemiller: My. Probably the two biggest influences that I had comedy wise before I started, especially one of them is Dave Chappelle.

Norma: Um, hmm.

Ryan Niemiller: You know.

Ryan Niemiller: In any current controversies.

Ryan Niemiller: Notwithstanding just talking from a performance standpoint I think Dave chappelle was always he was like my example of he was like the end.

Ryan Niemiller: of any conversation about a topic.

Ryan Niemiller: And most things like yeah before a joke would become hacky, so, like if Dave chappelle is talking about Michael Jackson Michael Jackson jokes are done now.

Ryan Niemiller: If he's talking about you know he.

Ryan Niemiller: always had the final say.

Ryan Niemiller: you're not gonna top that.

Ryan Niemiller: And, and then the other person I always loved was Jim Gaffigan.

Nadine Vogel: And he actually grew up.

Ryan Niemiller: he's a little older than me, but he grew up in the same area of Indiana I did so, he was sort of a role model and that way that i'm like okay just he came from here, and he successful so being from this place, does it, you know disqualify me from success it's not an excuse you know I can go out there.

Norma: Right.

Nadine Vogel: So. Ryan,

Nadine Vogel: So Ryan I one of the things I find challenging when it comes to disability is the need to always be inspirational.

Norma: Um, hmm.

Nadine Vogel: Right, no matter what you're doing professionally and i'm just curious if you've ever if you see yourself, or have ever seen yourself as inspirational or whatever your reaction is to that when people feel that way about you.

Ryan Niemiller: I will be honest that's that's never why I got into what I got into.

Nadine Vogel: Right.

Ryan Niemiller: Even when I was a kid I always found it so pompous when somebody would say i'm going to be an inspiration like who are you you don't get to make that call.

Ryan Niemiller: People are either inspired by you orr they're not you know you don't get to decide.

Ryan Niemiller: That that's the thing it's like it's like you can't just decide i'm gonna be i'm gonna be handsome well that's kind of how you know you are you're like that, just like the world, you know.

Ryan Niemiller: there's certain things like that so.

Ryan Niemiller: I never looked at that and I i've always to this day i've always hated it that there's this assumption that you have to be that.

Norma: Right.

Nadine Vogel: Right.

Ryan Niemiller: Now.

Ryan Niemiller: When I got into comedy and even like when I got onto A-G-T, which was a long term goal of mine.

Ryan Niemiller: I wasn't getting on the show thinking okay now so people are going to see it they're going to be so inspired by my story and they're going to try to do this i'll be honest i'm kind of just an attention whore.

Ryan Niemiller: And I like when people laugh at me I like being the center of attention, you know, like.

Ryan Niemiller: it's It makes me feel good.

Ryan Niemiller: To be that guy.

Ryan Niemiller: But then when I started getting like after I was on the show and I started getting emails and tweets and D-Ms and that type of thing.

Ryan Niemiller: From people with disabilities or parents of children with disabilities who are like hey, thank you for being one of us that's representing the Community in a positive light, I realized there was there is some power in that so you know I i've never wanted.

Ryan Niemiller: To be treated like an inspiration I don't that's not i'm just a guy trying to get through and i'm trying to succeed in the world that i'm in, but it does matter to people.

Ryan Niemiller: And you know i'm that's why i'm always very careful that i'm real when I was on A-G-T I was very clear that I did not want to be inspiration porn my job, my job wasn't to be oh wow.

Ryan Niemiller: Look at him, he can dress himself like yeah most of us, you know we can like people with disabilities are adaptable it's not.

Ryan Niemiller: You know, impressive because you learn how to do a.

Ryan Niemiller: thing you know that you just did it, so I was always very clear that I never wanted to be a disabled comedian I wanted to be a comedian who happens to have a disability, that was a very important.

Ryan Niemiller: distinction for me.

Nadine Vogel: Love it.

Norma: Yes.

Nadine Vogel: that's a great that's a great point for us to stop and move to commercial break and we'll be back in just a minute with the minute with the Ryan Miller, stay tuned everybody.

Voiceover: And now it's time for a commercial break.

[COMMERCIAL] If you're familiar with Springboard Consulting Disability Matters Events. You won't want to miss out on the 2022 Disability Matters Asia-Pacific Conference & Awards Live-Stream. It's happening November 9 & 10, and it's being hosted by Manulife. So, don't miss out! Visit www.consultspringboard.com for more information. Again, that's www.consultspringboard.com for more information.

Voiceover: And now back to our show.

Nadine Vogel: We are back today at disabled lives matter we're talking with Ryan Niemiller, you may know him from america's got talent or any place on a comedic world stage he's also known as the cripple threat of comedy we are having this fabulous conversation and.

Nadine Vogel: You know, one of the questions that jumps out for me Ryan is, you must over all these years you've probably had some amazing.

Nadine Vogel: moments amazing you know events, but is there one or two that just stand out for you is you know you would say, these are my proudest these these really rise to the top.

Ryan Niemiller: I mean it's probably the most obvious one is probably my run on america's got talent, you know, especially you know I ended up getting third place overall in my season.

Ryan Niemiller: And number one that's tough for any comedian to do on that show it's that shows not really designed for comedians per se, because a lot of people don't think comedy is a talent.

Ryan Niemiller: Because if you're good you're good at it, it just looks like you're talking you know even if you hate juggling if someone's good at it.

Ryan Niemiller: You can.

Ryan Niemiller: You can tell like okay they're doing something you know.

Ryan Niemiller: comedy not so much.

Ryan Niemiller: But, but for me that was such a culmination of a long journey, for me, not not not to I don't want to get to like sappy or or negative about it, but in the entertainment business it's still very hard to break through if you have a very noticeable physical disability like I do.

Ryan Niemiller: You know it's not something that you.

Ryan Niemiller: Can you can hide when necessary, or whatever they said, you know so.

Ryan Niemiller: I tried to I even tried to get on america's got talent for five years before they said yes, and it was sort of like breaking those walls down that like you know just because I have this doesn't mean that like.

Ryan Niemiller: People are going to react negatively to it or judge you and an unfair way So for me to finally break through and.

Ryan Niemiller: You know, get to be one of the few people with the limb difference, who got to be not only on television but put in a positive light I wasn't that inspiration porn we were talking about before the break you know, it was this guy is just funny and he did well.

Ryan Niemiller: So, to make the top three for that, and especially with you know, I was on the season that Cody Lee won who is another represent.

Ryan Niemiller: representative of.

Ryan Niemiller: You know the disabled community, so the fact that, like two of the top three of our season, where you know people on the team.

Ryan Niemiller: You know, for lack of a better phrase was that was an amazing honor to be a part of that and it showed that I had been right.

Ryan Niemiller: You know, all those years, when I was entertainment and getting told no by people who are like yeah nobody wants to see a gimmick.

Ryan Niemiller: You know how they would describe but nobody wants to say you know that's not going to last you can't do that, to know that, like just being myself, I was correct It made me feel.

Ryan Niemiller: Both vindicated and just I couldn't have been prouder for that run.

Norma: Awesome.

Nadine Vogel: Right no that makes sense for sure so i'm curious you know we talked about sometimes how disabilities impact us negatively um but then sometimes they give us quote unquote a leg up in some ways, do you feel that and, if so, what was that beneficial side of the disability.

Ryan Niemiller: yeah yeah So for me, I mean talking about the negatives, I think there's there's always the obvious ones, you know there's certain things that.

Ryan Niemiller: You know i'm pretty self sufficient I i've been able to live by myself, for years I travel by myself, like i'm fortunate I have that, but there are certain things I can't do and and.

Ryan Niemiller: it's always hard because, like it a lot of context people don't want to hear about what you can't do they want to hear about what you can what you've overcome what you've you know taken care of.

Ryan Niemiller: So there are there are those negatives, but, for me, I i've always tried to and it took me a while to get there, but nowadays, I always try to.

Ryan Niemiller: Put the positive spin on it, because there there's a lot of things that I think are very much beneficial for me like.

Ryan Niemiller: For instance, it might have been hard to break through in comedy because of my disability, but now that I broken through there's nobody else, like me, I am incredibly unique so i'm not competing with other individuals who have this because this i'm one of one. When it comes to that so.

Nadine Vogel: [laughter]

Ryan Niemiller: that's that's very beneficial in that regard and then just sometimes just finding those little little things on the road that I can use it to my advantage because.

Ryan Niemiller: I don't think it's unfair to say that a lot of times disabilities have a big disadvantage with how people are treated how you know situations are set up for us, so there are certain situations that I that I milk it a little bit to get back.

Norma: Um, hmm.

Nadine Vogel:[laughter]

Ryan Niemiller: let's say if i'm flying.

Ryan Niemiller: And I accidentally checked in too late, so now, I have a really bad boarding position where i'm going to have to get a middle seat next to the bathroom or something like that.

Ryan Niemiller: When I get to the airport i'm like hey i'm gonna need a little bit of extra time getting on the.

Ryan Niemiller: plane, do you think I could get that pre board and they're like oh absolutely.

Ryan Niemiller: Mr Niemiller you know.

Ryan Niemiller: That there's enough negative things,that we have to deal with that, I think, occasionally getting those positives is it's something i'm not too proud and my wife.

Ryan Niemiller: Who does not have a disability, she she loves that I have that.

Ryan Niemiller: Power as well.

Ryan Niemiller: Especially, if we're running late.

Norma: Awesome. And that's so important.

Norma: I think you know take advantage of situation when we have the opportunity to do so i'm know whenever i'm pushing my daughter, and her wheelchair, I have no problem getting to get on the plane first.

Norma: Because they let us on first.

Ryan Niemiller: Exactly and they way so i've had some people tell me that, like Oh well, that's not fair i'm like if I gave you the long list of things that that we deal with that aren't fair to us.

Nadine Vogel: Right.

Ryan Niemiller: Yeah yeah I always tell people, some people think it's unfair that I had I joke about my disability they say it's easy and i'm like well if you don't want me to tell jokes about but disability tell people to hire me for a real job without having any issues.

Ryan Niemiller: That you know, like like, let me just be judged on my merits when I tried to get employment, then i'll do whatever you need to I like I always tell people that I wish I we didn't have to talk about this.

Ryan Niemiller: You know, like like like you're all fantastic, but I wish that is a podcast like this didn't have to exist.

Ryan Niemiller: I wish it was just Oh, we have a disability, but we're still functioning members of society that can contribute like that's fine.

Ryan Niemiller: We don't have to talk about this it's.

Ryan Niemiller: Not a big deal but we're not there yet so.

Ryan Niemiller: yeah we're gonna have to deal with. me telling a few arm jokes. [laughter] you know.

Nadine Vogel: Well, you know Ryan that so true, I mean.

Nadine Vogel: So I run a global company called springboard and we work with corporations on mainstreaming people with disabilities as employees as candidates as customers and I always say that, like the best thing that can happen is we get put out of business because businesses finally get it.

Norma: Yes.

Ryan Niemiller: yeah I always tell people that and I even said this when I was you know i'm fortunate that like with what I do now, I don't have to work that nine to five anymore.

Ryan Niemiller: But I always tell.

Ryan Niemiller: People you would it would be to your benefit to hire people with disabilities, because.

Ryan Niemiller: Number one we are gonna work hard to prove ourselves we're going to prove that we are are capable and worthy because we just want that same respect so we're going to work hard for that respect.

Ryan Niemiller: And I touched on it a little bit before but too we're very innovative and we're very adaptable, you know, like there's.

Norma: Resourceful.

Ryan Niemiller: yeah exactly a lot like.

Ryan Niemiller: yeah there's a lot of things I can't do with my hand or I shouldn't be able to do.

Nadine Vogel: With the disability that I just figured out.

Ryan Niemiller: Because when you learn problem solving skills you're like Okay, you know there's been plenty of times, where i'm like all right, I am out here, I can't get my jeans back button i'm in a public restroom right now I can't go out there.

Ryan Niemiller: With my pants down what do I do, and then you figure it out like it makes you very resourceful I think.

Ryan Niemiller: You know, like obviously I I was always realistic to I wasn't trying to you know with my disability I wasn't trying to unload trucks or are things that we're going to be physically taxing that wasn't going to work, but like I can be a cashier.

Ryan Niemiller: You know I can do that, like this.

Ryan Niemiller: And i'm resource i'll figure it out, I people should just like look at look at alternate like things that you might not consider hiring people for because we'll we'll figure it out and we'll do we'll do a good job.

Norma: Absolutely.

Nadine Vogel: Absolutely well, let me, let me, let me, let me ask you.

Nadine Vogel: How to give one piece of advice, maybe two or three pieces.

Nadine Vogel: To individuals with disabilities.

Nadine Vogel: Whether, whether because they want to go into comedy or show business, or just life in general, what What would you say to that.

Ryan Niemiller: We touched on it a little bit earlier, but I think acknowledging your circumstances is one of the most important things that I had to learn.

Ryan Niemiller: And, and knowing what your reality is I always feel that us with disabilities, we have to be honest with ourselves, at the same time.

Ryan Niemiller: You have to you have to know what you're personally capable of then acknowledge what the world thinks you're capable of and kind of see where those meet in the middle.

Ryan Niemiller: And I will always push this i'll reiterate this again is just allowing yourself to fail and be sad sometimes and be upset the phrase, I like to use is it's okay to be mad it's not okay to stay mad I.

Nadine Vogel: Oh I like that.

Ryan Niemiller: I think that's very important because you'll be told by the outside world who doesn't understand how disabilities work.

Ryan Niemiller: Just be positive just be like Oh, you can do anything you can do anything, when I was five Oh, you can be anything you want Ryan well i'm not going to be a major league baseball pitcher Am I. Nope.

[Laughter]

Ryan Niemiller: That is not going to happen, but you know, so we can't do everything but there's going to be something we can do better than everybody else and it's.

Ryan Niemiller: Being okay with failing trying to find what that was you know I my lifelong dream is to be a pro wrestler I failed at that.

Ryan Niemiller: But it led me to theatre, which led me to comedy which I excel at so I had to be willing to be disappointed and fail and try things that might not work that might have been what you wanted to do and and understanding that.

Ryan Niemiller: Sometimes, what you want to do your disability might make impossible and that's Okay, because there's going to be something you're going to be great at.

Ryan Niemiller: You just have to be honest with yourself and and take the time to learn and be willing to fail on that journey, so you can be mad don't stay mad.

Norma: And that applies to everybody.

Ryan Niemiller: Oh yeah yeah.

Nadine Vogel: I was just going to say that Norma.

Nadine Vogel: it's like.

Nadine Vogel: It is everybody could figure that one out my God, you can you know we can have world peace.

Ryan Niemiller: yeah yeah I just I always thought of as again that's why I never i'd never if i'm lucky enough to have kids you know i'm an uncle Now I will never do this to my nieces and nephews just I think it's very it can be very dangerous to tell a child that they can do anything they want to.

Nadine Vogel: Right.

Ryan Niemiller: Because that let that set you up I I was so disappointed in myself so often as a kid when people well meaning.

Ryan Niemiller: But people would say hey you can do anything, and then I try something, and my disability made me fail at it, so it made me feel like I was, I was like I screwed up.

Ryan Niemiller: Like I was useless like I didn't do it, so I think telling any kid you can do anything is unrealistic because you're going to set them up for disaster but telling them hey try things.

Ryan Niemiller: you're going to suck at a lot of them we're humans, we suck at most things, if you think about it it's like realistically if we got to try everything you could possibly do I would be terrible at almost all of them.

Ryan Niemiller: But there's gonna be a couple things that I am great at that's what you got to find just keep trying until you get that.

Norma: Fail forward.

Ryan Niemiller: Exactly.

Nadine Vogel: Well like Norma said.

Nadine Vogel: That's a message for everyone, I this this session just flew I cannot believe we're out of time.

Norma: Yes.

Nadine Vogel: We are. Ryan, thank you, thank you and thank you for taking the time to speak with us for being so just darn funny.

Ryan Niemiller: Thank you.

Nadine Vogel: For for not only you know, informing our listeners, but really entertaining them at the same time, so we are grateful for that and Norma Thank you once again for being my fabulous co host.

Norma: Thank you.

Nadine Vogel: And we'll see everyone on another episode of disabled lives matter bye-bye everybody.

Ryan Niemiller: Thank you all. Take care.

Norma: Be blessed everyone.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Season 02, Episode 16 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Dona Harris

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.

Nadine Vogel: Hello everyone, this is nadine vogel one of your host of disabled lives matter we are a podcast but actually we are more than a podcast we are a movement and, as always, I am joined by my fabulous co host norma stanley hey norma.

Norma: How are you.

Nadine Vogel: Good norma I know you and I have been waiting for this interview to talk with Dona Harris.

Nadine Vogel: Dona Harris has done a lot of things, but, most recently, she has founded a business and she's the CEO and executive director.

Nadine Vogel: of an organization called.

Nadine Vogel: Great day Family Connections hi Donna, how are you.

Dona Harris: i'm great nadine, how are you.

Nadine Vogel: I am good i'm even better because we're talking now today so, can you tell us a little bit about Great Day Family Connections.

Dona Harris: Well, I call it Great Day Family Connections, a family enrichment program and it took me a long time to even get to that.

Dona Harris: But basically it's because as families, I think we've lost the ability to communicate and we're taking we have taken the ability for parents to be those first teachers out of their hands and as well as stop them from.

Dona Harris: what's the word i'm looking for for taking leadership, you know there's so much history that that parents aren't sharing with the children anymore.

Dona Harris: And values and morals and how to communicate, you know how to take care of their own personal finances and things like that that we've left up to the school systems and we left up to community at large.

Dona Harris: And I call it, this bring it back to the household you know that time and I will sit around my grandmother's kitchen table with my mother and my cousins and we'd have these family discussions that you just don't see or hear about anymore.

Nadine Vogel: Right right well you know it's interesting that you say that because norma and I both are special needs moms.

Nadine Vogel: And you know we've had conversations that you know, especially when our girls were younger they're adults now, but when they were younger.

Nadine Vogel: How we would you know, in the school systems or to the doctors say we are the experts on our children right ready listen to us, so I really excited to hear about the organization so.

Nadine Vogel: You know, tell me a little bit more tell listeners a little bit more about what was behind it, what obviously this didn't just happen overnight you woke up one morning and said wow this is needed.

Nadine Vogel: Was that what was that genesis to get there .

Dona Harris: Oh it's an interesting journey.

Dona Harris: So I always remember my family time and, two, three things in my family and my life that I keep.

Dona Harris: is one that my mother used to get on the floor and play Jacks with us, I have a sister.

Dona Harris: And my mother told us how to play Jacks so I always remember sitting on the floor to playing jacks and my father taught us how to ride a bike and how to play cards and so playing cards, we were supposed to be learning numbers because we played poker we played.

[Laughter]

Dona Harris: Um you know you name it, there was a card game that we played it so we also played um and then I remember one time it was raining and every Memorial Day, we would go out to flushing meadow park i'm from New York so we'd go out to flushing meadow park.

Nadine Vogel: Me too and I used to go to flushing meadow park.

Dona Harris: All right and you're how you would ride the surrey bikes right.

Nadine Vogel: Yep, yep.

Dona Harris: And so. And we would always get the.

Dona Harris: surrey and my parents and it was just such a great time and my cousins would come well one particular time, it was pouring.

Dona Harris: And, of course, you know as a kid you're.

Dona Harris: disappointed. so my mother took a blanket and put it out on the living room floor and we had a picnic and she turned the shower on and put us in a bathing suit.

Dona Harris: And would run back and forth, you know, like we were in a sprinkler.

Dona Harris: And I just remember that and I just remember how much fun that was so over the years when I you know went to school and graduated and you know blah blah and.

Dona Harris: I remember, working with women who were substance abusers and I was working at grady memorial hospital here in Georgia and that's when it was called grady memorial hospital.

Dona Harris: But I had to work with women who were pregnant substance abusers and I worked with them postpartum so after they had their baby.

Dona Harris: And I worked out of the neonatal unit because i'm a social worker so i've worked out of the neonatal unit, and I did parenting programs.

Dona Harris: And now, in New York, I used to work with foster care and adoption, so the irony right, so here.

Dona Harris: I was in foster care and adoption, when I was in New York and i'm training foster parents and everybody, and now I moved to Georgia.

Dona Harris: And i'm working with women who have substance abusers and those are usually the ones that you're taking the babies from. right.

Dona Harris: But the goal was for them to get well enough that their babies can go home.

Nadine Vogel: right.

Dona Harris: And so that was a whole different mindset and then I realized I did a one of my trainings was on playing and I asked them I said, what are the things that you like to play when you were growing up, and they didn't.

Norma: They didn't have any memories.

Dona Harris: If you didn't know how if you don't know how to play how you're going to teach your children how to play.

Dona Harris: Right, and so we set a date and the next time I went and we played and we taught them how to jump double Dutch we play Jacks I bought in bat and balls I bought in all of my favorite things that I like to do when I was a kid.

Dona Harris: and as an adult but I did all of those things that when I realized that you have adults who don't know how to play.

Dona Harris: Then you have children who don't know how to play and I think what happens is that so many people think oh you just go out and play, but there's so many social skills involved in that.

Dona Harris: You know you learn turn taking you learn patience you learn teamwork, you know there's so many things involved in that kids miss and so fast forward I ended up working at the school for the Deaf the Atlanta area school for the Deaf.

Dona Harris: Loved where I love parents I love working with parents, because if you can change the way a parent perceives.

Dona Harris: Their household that's going to help that child, so I never really sat down and counsel with the kids because i'm like well about to put them back in the same environment what difference does it make.

Norma: Right.

Nadine Vogel: Right right.

Dona Harris: So I worked with the parents and realizing that over 90% of them don't communicate with their children or don't know how to communicate with their children or communicate with their children minimally.

Dona Harris: And because they haven't learned sign language or you know, some of them have would they would do home signs.

Dona Harris: Which is fine if that's your mode of communication, but how do you sit down and talk with your deaf child the same way, you talk with your hearing child and so now.

Nadine Vogel: Right.

Dona Harris: you have to ask yourself. who's teaching.

Dona Harris: Your def child, you know your values and your morals and I would have parents called me up and say you know someone's on my family died, can you talk to them about death.

Nadine Vogel: Wow.

Dona Harris: Well my idea of death may be different from your idea death, you know or my idea of um when they should start dating may be different from your idea and so helping them have those conversations and I have a very dear friend.

Dona Harris: and her name is Kinga and she has organization called great day and we've been friends forever and she is a counselor.

Dona Harris: And we're used to always talk about how i'm like you do this Counseling, but you really need to have a family component and we talked about it for years, and so she says to me well, you need to open it up and i'm like you know what I am I am I am you know you put it off put it off.

Dona Harris: So she went for my business license and she named my program and so that's how it became great day family connections and.

Norma: You combined your your expertise and your passions.

Dona Harris: Right.

Norma: Nice.

Nadine Vogel: yeah that's that's great I mean the whole the whole concept of language, accessibility and communication, I mean you're right, you know when you have someone else communicate on your behalf, how do you know what they're conveying.

Dona Harris: Right.

Nadine Vogel: And how do you know that it's it's what your bel. like you said, your belief system your spirituality your everything.

Dona Harris: Right.

Nadine Vogel: I mean norma I don't know about you, but I can't imagine someone doing that, with my child.

Norma: Right. exactly.

Norma: And you know just observing.

Norma: You know, sometimes when their children around other people you know, there may be things that you say that they've conveyed that wouldn't necessarily be something that you would do it, you wouldn't do it that way.

Norma: No, no, I think it's important to for the kids understand where the hearing impaired or not.

Norma: How they can communicate with their parents and get what they need to get.

Dona Harris: Right.

Norma: Even if even if they're non verbals.

Dona Harris: Right, and I think one of the problems that happened with parents is they don't have that opportunity to grieve.

Nadine Vogel: Right right.

Dona Harris: um and that's another thing that I address in my program is having that opportunity to grieve to know that no your child is different, but different, is not, different is not bad because we're all different.

Dona Harris: Right.

Norma: yes.

Dona Harris: We all and and I tend to not use the word disability.

Dona Harris: That much because you know, as I say, we're all disabled in something.

Dona Harris: You know.

Nadine Vogel: right, right.

Dona Harris: so whereas you may say, well you're hearing and you can talk, but I can't sign, I can but i'm just saying you know you know.

Dona Harris: and that's a skill that's a learned skill and so to look at what the child brings to the table and I don't just focus on deaf children because they have siblings and I think is too often that we and i'm gonna use the words segregate.

Nadine Vogel: Our families.

Dona Harris: You know, deaf child goes here in child goes here, and you know.

Dona Harris: But no, this is about coming together and learning together and learning your history learning about literacy, whether it's books or financial literacy learning.

Dona Harris: about your health and health history things that we don't we no longer have conversations about so that's what the program and this program is called legacy and that's what is, you know that we do building our legacies and see where are legacies are going to go.

Nadine Vogel: Well you know what's interesting Dona is my older daughter when she was a baby she was unable to communicate verbally.

Nadine Vogel: And she's not deaf and doesn't have hearing loss, but as a result of her disability had trouble with that.

Nadine Vogel: And so they taught her signs basic signs that she could do, and they taught us, the signs because we couldn't communicate she was you could see how frustrated she was getting.

Dona Harris: right.

Nadine Vogel: But then what happened was she was learning the signs quicker than we were.

Dona Harris: yes, yes.

Nadine Vogel: Then we had frustration all over again, because now she was communicating but in a way we couldn't completely always understand.

Nadine Vogel: So it's an interesting balance that you know you talk about in terms of really working with the parents, I think that that's that's so important, and you actually have a program I believe called hands up.

Dona Harris: Yes, yes So yes, I do see sign language classes and I have various levels of sign language classes and, recently, someone had asked me about doing one, for children so i'm thinking about doing like a summer camp.

Nadine Vogel: wow.

Dona Harris: And I think it's important, especially when you have siblings that the siblings learn how to how to communicate.

Nadine Vogel: yes, yes absolutely.

Dona Harris: Well, I don't want siblings to become the interpreter for the child I don't think that's appropriate.

Dona Harris: But I do definitely want parents to learn how to communicate and I want people in the Community, because the more people that communicate.

Dona Harris: Even if you just learn basic it open so much door so many more doorways for that child, you know, to know that hey I have a sensibility and it's okay.

Dona Harris: You know that people still want me to be engaged because there's so many really great programs out there, that are not available to children who are deaf or hard of hearing.

Norma: Yes.

Nadine Vogel: You know what's interesting, intersting that you bring that up but norma I know you have some questions.

Nadine Vogel: We have to run quickly to commercial break as soon as we come back why don't norma I'll turn it back over to you and you just bring us back and start with some questions so Dona hang on to our listeners, we will be right back with Dona Harris stay tuned.

Voiceover: And now it's time for a commercial break.

[COMMERCIAL] Are you familiar with Springboard Consulting. If you are, you are certainly aware of our annual Disability Matters Awards. This year, 2022, we will live-stream our Europe awards on July 26 & 27, that event is being hosted by Barilla. And later this year, our Asia-Pacific awards are being live-streamed on November 9 & 10, and that event is being sponsored by Manulife. Don't miss out! For more information visit www.consultspringboard.com.

Voiceover: And now back to our show.

Nadine Vogel: Hello everyone, this is nadine vogel and joined by my co host norma stanley and we are interviewing Dona Harris today and talking about her amazing organization, the great day family connections norma i'm going to turn it over to you.

Norma: Well, I just had a couple of questions because i'm and I think because of.

Norma: Dona at an event that we were together that she kind of enlightened me and there was a there was a couple of things that I wanted to share about that.

Norma: there's a difference between American sign language and typical sign language, could you explain it and then the question is, you know, have you had an opportunity to interact with the Sign1News organization and it's something that you might.

Norma: be interested in because they actually communicate the news via for deaf deaf and hard of hearing people and they have the interpreters as well as the signers and all of that and it's connected to CNN and that's something that you've ever looked into.

Dona Harris: Okay, so I may answer your first question. Okay.

Dona Harris: So so American sign language is different from what I teach okay so it's basically an asl it has its own format and its own syntax.

Dona Harris: I teach what what.

Dona Harris: It has various names, but one of them is pigeon okay so basically or Conceptually Accurate Signed English is more typical and I do that because I feel it's easier for families to learn.

Norma: um hmm.

Nadine Vogel: Right.

Dona Harris: than to learn asl. so you can't talk and sign if you're doing an asl and it's very difficult to write you really it's not a written language, it is a signed language.

Dona Harris: I teach C-A-S-E because.

Dona Harris: I can talk and sign at the same time, eventhough you shouldn't but it gives it helps children to learn sentence structure.

Dona Harris: And I think that's important that they learn how to write well.

Dona Harris: And how to put things in a format, but it's called Conceptually. Accurate Signed English because.

Dona Harris: If I was going to sign my nose is running, it will be different, the way I was signed it in asl vs I was signing because such in in what they will call S-E-E. Signing Exact English because in Signing Exactt English to sign for run is like a person running and our nose runs more like a faucet.

[Laughter.]

Dona Harris: Right. Well at least conceptually more than it does as a person running and so.

Dona Harris: that's why I say I teach Conceptually Accuracy Signed English because I want families to feel more comfortable instead of saying okay now did I put this in the right order is this, you know just think about whether or not they can visualize what you're saying.

Norma. Right.

Dona Harris: That's a lot easier and so that's what I teach.

Dona Harris: I do not proclaim that I teach asl because I don't okay.

Dona Harris: To answer your other question.

Dona Harris: I know of Sign1News, and when I was working at the school, I had the you know the opportunity to meet them when they were just beginning.

Dona Harris: I have not had an opportunity to speak with them, or have any type of interchange with them, but I definitely promote it and I definitely encourage it, you know because I think it's wonderful that there is that service that's out there, you know and for anybody who's interested in i'm sorry.

Nadine Vogel: No. Go ahead.

Dona Harris: No, I was just gonna say, and I think it's great because it not only did they give you information on what's going on in the deaf Community whatever, but for the Deaf Community to be able to know what's going on in the Community in their own language.

Dona Harris: You know.

Nadine Vogel: And I, and I want to take that a step.

Nadine Vogel: Further, though, going back to what you said earlier Dona it's not even it's even bigger than that it's then those siblings.

Nadine Vogel: and family members.

Nadine Vogel: Right, who now can watch the news and engage participate with their siblings who are deaf or hard of hearing or have hearing loss.

Nadine Vogel: and actually do so in a very inclusive way, I also think that by doing that and doing what you're doing it, it does educate it educates the general public about inclusive.

Nadine Vogel: And, and we need more of that we need so much more of that in so many ways.

Nadine Vogel: Because what i've learned and norma, I think you and I have talked about this is that you know when the child is excluded when they're in school and they're excluded from activities and other things, the parents tend to be excluded as well.

Dona Harris: that's true.

Norma: yes. and we don't like that.

Nadine Vogel: No, no, no, no, not at all and so.

Nadine Vogel: What you're doing is is bringing people together in a way that goes beyond language right it goes it goes beyond it's really more about inclusive engagement and community, and I think that's really what you're trying to get out if I if i'm hearing correctly.

Dona Harris: No you're absolutely right and and you know you you touched on, because you said you're excluding the Community, but you exclude it in your own family.

Dona Harris: You know.

Nadine Vogel: Yes yes.

Dona Harris: You have a child who has a different ability, the family excludes you because they're like.

Dona Harris: Okay, what do I do and I don't know if I could take them with me or they may not take the other sibling or if the child is deaf, then you have one parent usually who learns how to sign, and so much the other parent.

Dona Harris: But what is that teaching that child, you know how do they evaluate how they feel valued, you know.

Nadine Vogel: right or not.

Dona Harris: Right and I have seen so many young children as they grow up because the school started at age three and it can stay until age 22 and i've had conversations once they hit teenagers, tells you how long I've worked there, teenagers and they didn't want to be engaged with the family anymore.

Norma: Wow.

Dona Harris: And then the family was upset but what pattern, did you set and not to say that you're not loving, not to say that you're not providing for them, or anything like that, but there is a picture in the deaf community that they'll use a lot and it's called Deaf Pet.

Dona Harris: So it's like a picture of a child sitting on the floor looking at these adults.

Dona Harris: Having these conversations back and forth, you know, and I was saying, and not be trying to be disrespectful in any way, but if I call my cat my cat will come. and if I tell my cat to stop doing something they'll stop doing something, but can I sit down, have a meaningful conversation.

Norma: Right.

Dona Harris: You know and that's what you want, you want to be able to have meaningful conversations with your children, no matter what their ability is you know you want to be able to do that.

Dona Harris: And deafness is the one disability that you technically have to learn another language.

Dona Harris: Now of course science has bought about cochlear implants and things like that, then you know give abilities and then you have some.

Dona Harris: parents who teach the children to be oral which is cool I don't say you have to use to have to do, that the only thing I have, I say you have to have a relationship with your child.

Dona Harris: You know you have to form that bond that they feel that they're valued and loved and treasured that they're just as important as anybody else in the household.

Nadine Vogel: Right and Dona i'm just gonna go back here, and you said about meaningful conversation with your cat if you figured that one out we can have a whole other interview.

[Laughter.]

Nadine Vogel: I just wanted to put that out there okay.

Dona Harris: But you think about it. I mean I don't know how old is your daughter is.

Dona Harris: But I think I look back at my life with my parents, we had meaningful conversations until I became an adult.

Dona Harris: But until I moved out I didn't realize.

Dona Harris: That all the things that my parents did for me wasn't the norm right, you know it wasn't the norm, and so, then I can remember calling my mother up when I was working at grady and saying oh I just need to let you know how much I really value all the things you and dad did for us.

Nadine Vogel: Right.

Dona Harris: You know, because when you hear the stories of other people.

Norma: Oh for sure.

Dona Harris: You know, and the things that they goes through, you know, I would have used drugs to you know.

Nadine Vogel: Right.

[Laughter.]

Dona Harris: But you don't get that appreciation until after you've removed yourself and gone through some other you know life experience.

Nadine Vogel: Right right. no absolutely and you know and another thing you said too I want to come back to about you know, sign language truly being another language.

Nadine Vogel: It frustrates the dickens out of me and norma you and I have talked about this you know grades you know K-12 when it when they're offering Spanish and Italian and German as a another language or even in many universities, why aren't they offering sign language.

Dona Harris: Well now, they are.

Dona Harris: Now they are so now.

Nadine Vogel: Is it standard.

Dona Harris: Yes, yes, yes, now.

Dona Harris: Now.

Dona Harris: I won't say that all the schools offer it i'm not going to say that.

Dona Harris: But it is viewed as a second as a foreign language.

Nadine Vogel: Good.

Norma: Wow.

Dona Harris: Georgia state offers it I think Valdosta offers it and it may be, you know some other schools but yeah, it is viewed as a second language, yes.

Nadine Vogel: Well, it is about time.

Norma. It is.

Nadine Vogel: It is really about time well, this has been wonderful i'm.

Nadine Vogel: You know it's it's interesting to me when I hear what you know the things that your organization does, let me ask you this, how do families know about you how did they come to learn about you, how can we have the help other families know about you talk just a little bit about that.

Dona Harris: Okay, so it's like I said, this has been a journey.

[Laughter.]

Nadine Vogel: It always is.

Dona Harris: So yeah so my organization, I have finally found my place, so to speak.

Dona Harris: Okay, and so the legacy program will start in June.

Dona Harris: And we're going to start off.

Dona Harris: Basically, with talks just lunchtime talks that I called home talk and it's called Engage N Eat, and so we will start that on in June, and I think I have it for Thursday afternoon in June, because, like, I am a care provider, and so I had.

Dona Harris: A work around scheduling and things like that, so that i'm not impacting you know my father in any kind of way.

Dona Harris: right and then.

Dona Harris: The legacy program i'm hoping that will start that in the fall and that will be a 10 week program with activities.

Dona Harris: Based program so basically i've been doing word of mouth i've had you know i've worked with a lot of people and so i've done word of mouth and friends and things like that, as my program builds and then I have an event that i've done this would be my fourth year doing it's called Silent Town.

Dona Harris: And I used to have it in March and I moved it to November, because November is national communication month.

Dona Harris: And people would think and I send it up just like have you a Community so even when we did it on zoom for the first year due to Covid. we set it up as a Community, and so you have stores, we have restaurants, we had a post office everything you can find in a community, the key to it is you can't talk.

Dona Harris: So it didn't matter if you knew sign language, because you couldn't sign because supposedly no one else should know sign language so basically is to figure out how do you communicate to somebody else, how do you get to know. Other people.

Nadine Vogel: Nice.

Dona Harris: How do you find out know what their services are and people had a blast the biggest thing was getting vendors because i'm like well how am I going to talk, I can talk well you know.

Nadine Vogel: yeah.

Dona Harris: You know you're going to write. you'll put it in the chat when we had to go to zoom but that's that's my biggest event is Silent Town.

Nadine Vogel: So Dona just tell us, is there a website, or some way to get in touch with you.

Dona Harris: My website is greatdayfamilyconnections.org or you can feel free to email me at dona.greatdayconnections@gmail.com.

Dona Harris: um like I said we're we're changing some things we changing some of our logos were changing some of the activities we had on the website So I had to condense what I was doing too much.

Dona Harris: um what does a a mater of everything no how's that go.

Nadine Vogel: Oh yeah.

Dona Harris: master of none.

Nadine Vogel: yeah exactly yeah.

Dona Harris: I can remember how exactly it goes, but yeah.

Dona Harris: You can be all over the place, but not doing any one thing well.

Dona Harris: And I decided it is important for me to do less and do it.

Dona Harris: Well, so that what we're going to do.

Nadine Vogel: Well, it sounds like you're doing a lot a lot and doing it all well, so thank you so much for. all you do.

Dona Harris. Thanks so much for this opportunity.

Nadine Vogel: And your organization, unfortunately, we are out of time, so I just wanted to have our listeners know that again this was Dona Harris and Great Day Family Connections, we look forward to talking with you again soon and norma once again another. great show. another great show.

Norma: Yes, it was.

Nadine Vogel: So for our listeners, we will see you on another episode of disabled lives matter see you soon.

Dona Harris: Thank you.

Norma: Be blessed everybody.

Nadine Vogel: bye bye everybody.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Season 02, Episode 15 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Isaac Zablocki

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.

Nadine Vogel: Hello everyone, this is nadine vogel coming to you from disabled lives matters, this is more than just a podcast, this is a movement, and I am joined by the fabulous norma Stanley my co host a normal.

Norma: Hi, hey everybody.

Nadine Vogel: I am really excited today norma because we're going to be interviewing Isaac Zablocki.

Norma: Yes.

Nadine Vogel: Isaac is the director of the Israel film Center at JCC in Manhattan and there's just so much here to talk about so Isaac welcome to the show.

Isaac Zablocki: Thank you so much, thanks for having me.

Nadine Vogel: Yeah absolutely, so I know that you went to film school, this is, you know your passion your avocation your profession to tell us a little bit about let's start with the work that you do at the Israel film Center.

Isaac Zablocki: Well, I think all of my work really connects ah, I believe that film is a tool for is a form of education and a tool for change, I think.

Isaac Zablocki: When people watch films any kind of movie I mean even truthfully like mainstream movies too Hollywood blockbusters they change you as a person and that's what good art does and.

Isaac Zablocki: And that's a very powerful and a very important tool to have, I think, film in general is is really one of the far reaching and sometimes easily accessible for some in some ways.

Isaac Zablocki: kind of medium and you know a lot of people find it really easy to watch movies, most people like movies, and you know it's kind of like ice cream in my mind.

[Laughter.]

Nadine Vogel: I like that.

Isaac Zablocki: Yeah and then and and so, so all of the work that we try to do here at at the Marlene Myerson JCC Manhattan, which is the home to all of our film festivals.

Isaac Zablocki: is to see film as a tool for social change as a tool for change in general as an impactor as not not just entertainment sure entertainment's great I don't belittle entertainment I.

Isaac Zablocki: Think um let's think about how this really deepens our communities experience and and that connects really I think everything that we try to do and how we approach film.

Norma: awesome.

Nadine Vogel: Well, I think that's so important, because if we if we look at film, as you say, as as a way to change or influence.

Nadine Vogel: Not just entertain, but to do both, then I think we have to be extremely extremely mindful, the studios needs to be extremely mindful about what gets put out there, would you agree.

Isaac Zablocki: With great power comes great responsibility is that what they said about spider man or.

Nadine Vogel: Exactly.

Isaac Zablocki: Yeah.

Nadine Vogel: Exactly.

Isaac Zablocki: I think, yes I think there's there's the.

Isaac Zablocki: Art house movement that might and general movement that might need to try to find ways to balance out what's going on in Hollywood and.

Isaac Zablocki: I do believe that Hollywood is changing for the better, but I think yeah I think every filmmaker every producer every distributor needs to think about like How is this film making our world a better place.

Norma: Yeah.

Nadine Vogel: And, and I would assume when you say that you mean through the story, but then also through the actors and actresses that are portraying the characters.

Isaac Zablocki: What are the messages we're putting out there, what are we showing our world, how are we showing our world, is it coming you know, are we showing our world as a diverse place or as a as says the opposite, are we showing.

Isaac Zablocki: Our world with true authenticity or or are we, you know kind of phoning it in.

Isaac Zablocki: And, and so much more like what messages, how are we, you know who's the cool kid in this movie who's the bad kid in this movie and.

Isaac Zablocki: What is that saying to to our how our parents reacting how our parents behaving I mean life does not does mimic art in the case of.

Isaac Zablocki: movies for sure.

Nadine Vogel: Right. And what's the conversation we're having as a result.

Isaac Zablocki: Right right, how are we taking that further, how are we taking this deeper or are we just saying, are we sitting there and applauding and saying great that that we saw this, or are we actually taking action are we actually using this you know I think movie should be a starting point for a conversation.

Isaac Zablocki: Are we having are we taking it further and having those.

Isaac Zablocki: Discussions and sometimes I think movies can take us into into areas that we're not so easy to to approach.

Isaac Zablocki: One one program that we've been doing here as part of one of our programs is talking about death, you know that's a really hard topic to talk about.

Norma Stanley: It is.

Isaac Zablocki: And let's show some movies that approach that that allow you to begin to have the conversation, and you know take us out of our comfort zones, a little bit and talk about you know some things that are that are really real. And right.

Nadine Vogel: No. Absolutely.

Nadine Vogel: No death is real, what do they say death and taxes right.

Isaac Zablocki: No good tax movies that's the problem.

Nadine Vogel: Yeah.

[Laughter.]

Nadine Vogel: Exactly.

Norma: Well, we're actually getting closer to movies, like Purge, I mean it's getting really scary out here.

Norma: Where art is imitating life or life is imitating art.

Isaac Zablocki: yeah.

Nadine Vogel: That's true norma.

Nadine Vogel: Now Isaac. I think you spent time at miramax films.

Norma: When you were at miramax did you find, as you were working in that space um an opportunity to.

Norma: to incorporate the disability community and is that something that would that interest came from is that is that where you um originated the opportunities to say how can we incorporate more people with disabilities in film.

Isaac Zablocki: I like to joke that everything I do today today is thanks to miramax because when I was there I learned exactly what I didn't want to do and.

Isaac Zablocki: want to be, and where I didn't want to be and it's it's it's like you know till this day now I don't know how many years later 18 years later.

Isaac Zablocki: I am still completely motivated by this notion, and I didn't even know about half about much of it seems that that all the stuff that was going on at miramax that.

Isaac Zablocki: is now kind of public you know I knew it was a bad place and I knew that wasn't necessarily the way I wanted to spend my life in working film and doing so, I wanted to do my work to have more meaning.

Isaac Zablocki: And, and I wanted to work in an environment that was.

Isaac Zablocki: Safe and accepting and.

Isaac Zablocki: kind and and.

Isaac Zablocki: brought out the right messages now.

Isaac Zablocki: I mean, I do believe that miramax is.

Isaac Zablocki: has brought some amazing films to the public and and i'm glad they they managed to out of all of that kind of.

Isaac Zablocki: Unfortunate environment they managed to actually do some good to this world both artistically I think there's great films out there and message wise great films out there i'm not criticizing the movies, they made.

Isaac Zablocki: But i'm actually even surprised that out of such a volatile environment that that that real goodness can come.

Isaac Zablocki: And and i'm grateful that you know I did not think about my work with ReelAbilities or disability work when I was there, it actually it was more like you know, I have to give my life more meaning and and find another way to approach film that's healthier that's.

Norma: So where did this impetus come from, for what you and when you started in incorporating and looking for opportunities to showcase the people disabilities and their lives and Community through film where did the impetus come from.

Isaac Zablocki: So I have a personal connection to disability, but, honestly didn't come from that it really came from the Cinematic side of things and seeing that if my goal is to.

Isaac Zablocki: To use film as a way to elevate voices that aren't heard enough possibly hardly heard at all, and then, then you know there's a lot of film programs, a lot of film festivals out there, we don't just need another film festival.

Isaac Zablocki: I would, I was feeling that there was a great need for more films on disability to have a platform to be celebrated to have those voices really get out there.

Isaac Zablocki: And it's been a real uphill battle for ReelAbilities, but then you look at where we are now and how much has changed, and what went on, with CODA this year, at the Oscars and.

Norma: Yes.

Isaac Zablocki: And you see that you know, a revolution is really happening and and and it's kind of like it's amazing to look back cuz cuz you know when we started ReelAbilities 15 years ago.

Isaac Zablocki: There was none of this going on there, there was you know only inappropriate representations in the mainstream but we're seeing a huge difference in in the submissions we get in the quality of the films and and really in the messaging too.

Norma: That's awesome I do believe we have to take a quick break and come right back, so we will come right back with disabled lives matter, and you guys stay tuned while we continue to speak with Mr Isaac Zablocki stay tuned.

Voiceover: And now it's time for a commercial break.

Voiceover: And now back to our show.

Norma: And we are back with disabled lives matter and we are speaking with Mr Isaac Zablocki and he is.

Norma: Are you, what are the we were talking about ReelAbilities and why you thought it was an important you know important venture into an effort to go ahead and create these opportunities to tell the stories and filmmakers who aren't you know aren't embracing.

Norma: The disability community and all the all that's out there to be told, and so you said, but you also had a personal connection, what is, that personal connection.

Norma: To the to the Community.

Isaac Zablocki: I mean there's so much, but I mean I personally have and this is something I wouldn't have said 15 years ago and kind of like you know kept it to myself, because I thought I would never get a job if people knew that I had a learning disability.

Isaac Zablocki: my brother is physically disabled and my cousin's on the spectrum and it's just played a big part of my life from day one.

Isaac Zablocki: And and and kind of like I I was lucky enough to grow up in an inclusive world and and I recognize that not everybody is not everybody sees people with disabilities and I think.

Isaac Zablocki: that's part of what ReelAbilities tries to do is given opportunity for people with disabilities to.

Isaac Zablocki: to actually be seen and through movies it's a great way to do it because I, you know I gave my ice cream theory before, because you know you're coming to a movie.

Isaac Zablocki: and hopefully you'll you'll you'll come for the entertainment and stay for more and if you're from the disability community.

Isaac Zablocki: And you know have grown up in a diverse in the same company, the same kind of diversity that I grew up with then then finally there's a place for you to actually see your world see the world the way you see it on the screen.

Norma: Absolutely.

Isaac Zablocki: And not just not just some in the slanted way and I think I think.

Isaac Zablocki: Hollywood has hurt a lot I think Hollywood Hollywood in disability does not mesh perfectly it could there's no reason for it not to I think Hollywood.

Isaac Zablocki: Has has you know set up the a standard of what we see on the screen, that is not necessarily the reality and and keeps people in the reality.

Isaac Zablocki: In some ways out of reality.

Norma: Absolutely and that's one the reasons why nadine, and I do disabled lives matter to generate the the opportunity to share.

Norma: All the amazing stories that are out here that they tend not to hear about we're both also mothers of children.

Norma: with disabilities, so we understand that there's so much to be told, then there's so many there's so much there's just so much.

Norma: there's so much that we want to make sure we fill in the gap in our own little way.

Norma: Through the work that we do and as as parents and as advocates, and so we get excited when we get to meet people like yourself, who are taking their craft and making sure that the Community is represented in a way that they need to be represented, so we thank you for that so.

Isaac Zablocki: It's a pleasure.

Norma: Go ahead.

Isaac Zablocki: No. it's a pleasure, and thank you for your work it's it's you know, we need to have as many as many people in this in this campaign as possible.

Norma: Absolutely so what are some of your favorite moments with ReelAbilities and some of the projects and artists that you were able to discover through the process of the film festival.

Isaac Zablocki: Oh that's an unfair question on so many levels, first of all, there are so many great moments every year, every year, I listen i've run many film festivals annually, as mentioned before, and ReelAbilities don't tell the others, but ReelAbilities is by far i'll say the most impactful.

Isaac Zablocki: And every year, I am like blown away by the responses by the quality of the films by the the.

Isaac Zablocki: By the just events that happened there the conversations and and the reactions of the audiences it's really it's mind blowing and some of it is from.

Isaac Zablocki: I mean, I was, I was looking through an old email, the other day, and I saw an email that I wrote about about a about one year how our closing night because we attracted a we attract the disability audience, we had a dance party afterwards and inclusive dance party.

Norma: How cool.

Isaac Zablocki: A mother came over to me asking me for pictures of her daughter dancing for the first time in public.

Norma: Wow.

Nadine Vogel: Oh my gosh.

Isaac Zablocki: We provided a platform for that, and this goes on every year at the at the festival there's there there's audiences that are connecting for the first time audiences, who are veterans.

Isaac Zablocki: Who are connecting for the hundredth time and just really feeling that this is not like anywhere else.

Isaac Zablocki: We try every year to create a really inclusive environment, and that makes me really proud every year, and every year we have to learn, we are we're the most accessible film festival i'd say in New York for sure and.

Isaac Zablocki: And yet we are learning constantly and we are finding ways to make people feel more welcome.

Isaac Zablocki: This pandemic taught us that we taught we learned something like we used to run in over 40 locations throughout New York to be more accessible, you know people shouldn't just have to come into.

Isaac Zablocki: midtown Manhattan in order to see see a disability, film, we should go to them too and then, when we had our first virtual film festival we suddenly we're getting all these emails that that this that this is the first time they could attend ReelAbilities they've wanted to over the years.

Norma: Wow.

Isaac Zablocki: And audience members couldn't because of their disability, now that we're back in person we're keeping that.

Norma: Absolutely.

Isaac Zablocki: We're keeping the virtual right. And we continue to hear from people their gratitude for, for you know, making sure that people can access, however, they can.

Nadine Vogel: Isaac this is.

Nadine Vogel: Nadine i'm hoping y'all can hear me.

Norma: Yes.

Nadine Vogel: I had an amazing opportunity to attend ReelAbilities film festival in Manhattan number of years ago and it was interesting because.

Nadine Vogel: My company springboard we've had an opportunity to work with different film festivals, and by far by far you lead the way from the standpoint of accessibility.

Nadine Vogel: And really just every aspect of making sure everyone is comfortable, obviously including people with disabilities, one question that I had is.

Nadine Vogel: Do you feel being that you're affiliated with the JCC that there's anything from the Jewish community that impacts this in a slightly different way.

Isaac Zablocki: that's a big question, I mean I mean we constantly debate like you know.

Isaac Zablocki: The relationship there, I mean the the leadership of the JCC has made ReelAbilities what it is, and that's really been really great, this is not a Jewish film festival at all.

Isaac Zablocki: This is a be i'm happy to connect it to Jewish values, I think all the religion religions out there, hopefully have positive reviews of inclusion and and and making sure you know, I mean we're we were all made in the image of God and seeing the humanity and everyone.

Isaac Zablocki: But the truth is, this is about a Community effort and the JCC here in Manhattan has has really put an emphasis on disability inclusion, as well as other kinds of inclusion, but but i'm here to talk about the disability element.

Isaac Zablocki: And they and that's what allowed ReelAbilities to exist in place like this and they put the effort in and allow us to to to grow and expand even way beyond the JCC I mean ReelAbilities is in cities across the country and.

Nadine Vogel: That's right.

Isaac Zablocki: And it's it's really a much larger program than just a Community Center in Manhattan and.

Nadine Vogel: Right.

Isaac Zablocki: And that's something, because I think also came from, not every institution going to allow that to happen, but.

Nadine Vogel: Exactly.

Isaac Zablocki: the JCC really saw this saw this as going beyond just like you know its personal goals to seeing this as a much broader important topic to take beyond.

Nadine Vogel: yeah so so i'm curious if we were sitting down having the same conversation five years from now, maybe, maybe again 10 years from now, how would the conversation be different.

Isaac Zablocki: Well.

Nadine Vogel: Or would it be.

Isaac Zablocki: Well. I would imagine we would be where we are 5 or 10 years ago, as far as the quality and the mix, I mean I mean so much has changed the movement has changed the language has changed.

Isaac Zablocki: The concepts of inclusion, I have changed in the last two years in many, many ways and has become kind of at the forefront.

Isaac Zablocki: of a lot of people's agendas.

Isaac Zablocki: In five to 10 years from now, I mean i'm always saying I want ReelAbilities to become obsolete.

Isaac Zablocki: That you know disability and every other dis, and every other minority is fully represented appropriately and authentically.

Isaac Zablocki: In every field that you will not need a festival like this, the truth is, when I think about it is that maybe maybe they'll still be a place that needs to bring.

Isaac Zablocki: These films together and highlight them and kind of like like create a space for the disability Community maybe maybe we will be reaching the mainstream fully, but although i'm sure there.

Nadine Vogel: [Snicker.]

Isaac Zablocki: Will be work that needs to be done, but but also have a space, just to celebrate and to recognize.

Isaac Zablocki: A unique community that kind of most of its members don't even know that they're a part of it or don't even like to recognize they are part of it.

Nadine Vogel: Right.

Isaac Zablocki: So, so I think I think they'll still do that place from there, I didn't want to want to emphasize like one of the changes that's that's happened that I think is an important emphasis to I think there's a lot more inclusion, the question is, is the inclusion of quality and is it responsible.

Nadine Vogel: Right.

Isaac Zablocki: Those are things. That and and you know, anyone can decide what quality is there, these are subjective terms of quality and and responsible and responsible.

Isaac Zablocki: But, from my perspective, we want that's what we try to do at ReelAbilities and we're constantly evolving with that movies, that we showed at the very beginning of ReelAbilities we might not show now.

Nadine Vogel: Got it.

Isaac Zablocki: Because of our changing and evolving approach.

Isaac Zablocki: 10 years from now, some of these films, we might say, you know, this is, this is not how we. want to.

Isaac Zablocki: Present disability.

Nadine Vogel: Right right. so i'm wondering, as you talk about quality and responsibility How does that seep into I mean, I think it should be how doesn't seep into the film schools and and what's being taught today.

Isaac Zablocki: yeah yeah I mean that's that's where it needs to start filmmakers need to take this into account, need to be aware of.

Isaac Zablocki: First of all, authentic representation, you know, everybody a lot of people grew up on films that use disability and kind of a.

Isaac Zablocki: i'd say a way to to kind of like you know get attention and not necessarily to tell a real story of what of what disability looks like and and how it should be portrayed.

Isaac Zablocki: I think I think film students should be taking classes in this I go and some film schools throughout the year and talk about.

Isaac Zablocki: About especially they want to know about accessibility, how to make your films accessible.

Nadine Vogel: Right right.

Isaac Zablocki: So yeah you're making a your film and you're learning about how to write up a budget and and you have to know that that that just like you're putting money aside for color correction.

Nadine Vogel: Um hmm.

Isaac Zablocki: And for sound, put money aside for captions and audio description, so when you submitted think about this when you submit it to your first film festival, the first time, your film is going to be shown right now.

Isaac Zablocki: 99% of the films being submitted do not have any of that accessibility, which means the selection committee can't include somebody who's necessarily deaf or has.

Nadine Vogel: Right.

Isaac Zablocki: So these films aren't even being selected by the Community itself, which is something that we we try to do.

Isaac Zablocki: Within our selection process so, so this is something that really needs to change from the very beginning, people need to start start talking about how they make their films accessible.

Nadine Vogel: I think that that's so critical, because when you know I have opportunities to work with the studios you know, by the time it's at the studio this should already be worked out.

Norma. Absolutely.

Nadine Vogel: But then the studios are challenged right norma you know we hear from the studios about their challenge they don't know what to do and it just delays production, I mean it complicates the whole in an already complicated process.

Isaac Zablocki: there's a long yes there's something I want 10 year 5-10 years from now, I want all the films that come to ReelAbilities to already be captioned and audio described and fully accessible because right. now we're seeing the.

Isaac Zablocki: Numbers grow from year to year. it went from one. To three.

Isaac Zablocki: I want to be at the 10-20 mark in in five years.

Nadine Vogel: Got it.

Isaac Zablocki: I hope to see more of that I want people to actually use them, you know we we create.

Isaac Zablocki: We create captions for all of our films and then I see them going to film festivals across America and around the world and not using the captions because I mean that, even if a director asks, can you share it with captions film festivals will say no, no, no, we don't do that that's.

Nadine Vogel: Right.

Norma: Wow.

Nadine Vogel: And I know. I know.

Isaac Zablocki: And that's, of course, something that can be argued, you know you're you know you're showing foreign films with subtitles why can't you. show captions.

Norma: Absolutely. Exactly.

Norma: it's amazing.

Nadine Vogel: Exactly exactly well on that note, I cannot believe this, but we are out of time, Isaac it has been a pleasure, a.

Nadine Vogel: pleasure speaking with you today, I personally love ReelAbilities.

Norma. Me too.

Nadine Vogel: I'll get back in touch with.

Nadine Vogel: You because I have some ideas on how to promote it even further and i'm really excited about this so again, thank you for taking the time.

Isaac Zablocki: Thank you for doing this and, and please do do I would love to hear more on how this can be promoted.

Norma: Awesome.

Norma: Yeah. I go to the one in Atlanta all the time, so I love it, so thank you so. Much. For all you do.

Isaac Zablocki: Thank you.

Nadine Vogel: Well norma, as always, thank you for being my amazing co host.

Norma: [Laughter.] And thank you for the opportunity.

Nadine Vogel: And to all our listeners.

Nadine Vogel: We look forward to seeing you on another episode of disabled lives matter they really do we are more than just a podcast we are movement, bye bye everybody.

Norma: be blessed.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Season 02, Episode 14 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Alfacena "Millie" Barrett

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.

Nadine Vogel: Hello everyone i'm nadine vogel your co host of disabled lives matter, this is an amazing podcast but it's not just a podcast, it is a movement and helping me in this movement is norma stanley my amazing co host.

Norma: Hello everyone.

Nadine Vogel: hey norma I hear that we have a fabulous lady, we are interviewing today.

Norma: Yes, yes, Miss Alfacena Barrett and her everybody knows her as millie I actually know her as an amazing woman who has overcome so many different struggles and challenges and.

Norma: You know she actually adopted her nephew and you know he is a model and he rides horses and he does all kinds of amazing things.

Norma: And you know what I love about knowing the story is that they um you know she gives him life and vice versa, and so it's a beautiful thing to see, and I just wanted her to be able to share.

Norma: How she's done the things that she's been able to do over the years, with him, because he's you know millie just come on and say hi and just.

Norma: Come start telling your story.

Millicent: Yes, I am Alfacena Millicent Barrett and everybody affectionately call me millie because when I was growing up, they have problem calling Alfacena.

Millicent: So I was, I was brought up with my middle name instead and in shortened form of Millie. Yes, so I want to tell you first about my nephew/son, if you should say to me to anybody that your aunt calls you he will let them know that's not my aunt, that's my mom.

Millicent: So he lost both parents within a year his father died in 2006 of June and then his mother, shortly after his father died I got a call that she was diagnosed with cancer.

Millicent: put up a good fight, but she didn't make it so she died May of the following year, which is 2007 during that year was the time that I had surgery for my third cancer.

Millicent: And um there was no way for me to leave him in Jamaica, because he was in Jamaica they do have care for special needs but it's not spread wide in the country.

Millicent: I know there was a school, which was close by to them that they could have used but earlier on his mother did not choose to send him to that school she sent him to the regular school because he thought he that he would his speech.

Millicent: would be developed much better which didn't happen. Any how.

Millicent: lucky for him, he had a visa already so I told them to bring him to me, I was discouraged by my family members, because they know what I was going through.

Millicent: But it's like I can say that God had his plan, because when he came I met the right persons everybody that I needed in my life for that moment to get him settled in the US was.

Millicent: brought to my path so his adoption went through like a breeze they told me he had to be with me a year for his adoption to go through, but the person told me go ahead to the Court and get.

Millicent: custody um.

Millicent: not custody.

Nadine Vogel: Guardianship.

Millicent: guardianship that's right for him and getting him enrolled into school that was done.

Nadine Vogel: Millie, what type of disability does your son have.

Millicent: Oh sorry my son is 26 year old young man now with down syndrome.

Millicent: Okay, and his intellectual disabilities is consider moderate.

Nadine Vogel: Okay okay.

Millicent: When he came to me he has very little spoken language.

Millicent: It was very good of receiving the receptive language was good, but is, you know is. I missing the word now, his expressive language is very limited right, so any was like 11 at the time when I adopted him.

Nadine Vogel: Well you're you're thrown into the disability Community like overnight, what was that, like, for you.

Millicent: RIght. You know what when he was born with disability and it took me a while to remember that I used to go to a few meetings, even before so it's as if God was preparing me, so I had I got some pamphlets and i sent it to his mother, so when he came to me now.

Millicent: I wanted to find out everything that I need to do for him to progress.

Nadine Vogel: Right.

Millient: So I went to all the meetings inquire find meetings and go to different meeting I took him to a down syndrome doctor.

Millicent: have them getting fully checked out, and I said to him what level, he is and the doctor was like there's no level, and I was like because I know i've seen different features.

Millicent: Then I guess, I should say of down syndrome, so I thought it was a different level, he said, there was no different lever and.

Millicent: I asked a lot of questions I got him into school.

Millicent: And the class, he was in the teacher were very good they communicated with me they were the ones who introduced me to have him first back riding somewhere along the line and he loved it and for the first time.

Millicent: I think that was like two years later, so I realized that he was disappointed I recognize that feature on his face he wants to go riding that day, and it was too hot.

Millicent: And they call and say you know it's so hot to take the horses out and that look on his face tells me a lot and that he was very disappointed, even though he couldn't express himself.

Millicent: So in 2012.

Millicent: is like I got just like I tell my story, just like Abraham got a call to move to a place where god's gonna bless him that's how I felt that it's time for me to move because I was thinking about him what if I get sick.

Nadine Vogel: Right.

Millicent: What's going to happen to him, because I do have relatives in.

Millicent: At first it wasn't Georgia, as my brother is in Florida, and I was trying to move closer to him and he said they're planning to get a job in Georgia.

Millicent: And when I got off the phone I didn't even call him back and said, you know what i'm going to go to Georgia, because I have other relatives here and I have friends, who I grew up with that would be closer to him.

Nadine Vogel: That support system.

Millicent: Right, moral support.

Norma: Right, that you have to have.

Nadine Vogel: Right.

Nadine Vogel: So, how has your life changed since then.

Millicent: Basically.

Nadine Vogel: What have you learned about.

Nadine Vogel: You and the disability community.

Millicent: Yes, it's going to take a lot to say how my life has changed because when I adopted him I just gone through a divorce and I had a House so being divorce.

Millicent: I was free to do whatever I wanted to do to go wherever I wanted to go, so that got changed because now, I have to change my life to cater to him.

Millicent: And about his needs and can't go wherever I want to go I have to make sure, things are OK for him before I can plan to go anywhere luckily, for me, I got put out of my job at 2009.

Millicent: Because of my health so that made it easier.

Nadine Vogel: Right.

Millicent: Yes. I didn't have to worry about childcare and and stuff like that, when I was in Delaware so i'd be there when he goes on the bus.

Millicent: When he just came I was still working so two years later, two years later, was when I stopped working.

Millicent: and during that time during that first two years his brother, he has an older brother, he has older siblings was living on the next street so I did have a support system, but they move away from Delaware to Texas, because of jobs.

Nadine Vogel: But Millie, my question is more about you know what have you learned about the disability Community having a having a son, you know and now an adult son with disabilities, what has that taught you.

Millicent: That taught me that they are as regular as possible, if you make it look and look for the resources that they need their life can be as normal, as any other child.

Millicent: He in spite of his barrier to language he was quick, he was smart he learns to do everything he's good, with his hands he's he's good with his eyes he's very observant so whatever you want to him to do you just show it to him, so I realized that they can do almost anything.

Millicent: Just as long as they have the support the support system.

Nadine Vogel: I also think that and norma you and I have talked about this and it's also based on expectations.

Millicent: Yes.

Nadine Vogel: Expectation that they're going to do all these things.

Millicent: yeah.

Nadine Vogel: You force them to kind of live up to that expectation, so to speak.

Norma: Absolutely.

Nadine Vogel: Right and norma for you too.

Norma: you can't coddle them, you have to really.

Norma: put them to the test and let them see themselves as able to accomplish what you expect of them.

Millicent: Yes, that's what I realized because comparing to some that i've seen and with Vilair, they can be discipline don't let them do what they want to do.

Nadine Vogel: Right.

Norma: They will manipulate you or try.

Millicent: yeah just like regular children just.

Millicent: Like, for example, when I was with his mom before she passed and they've came for a visit and we went to a store and he was running around and.

Millicent: She I said to her, why are you so upset normal children do that, and she was like he's normal which I get what she's saying.

Millicent: But that's what regular children do the mess around in the store and play around stuff because then he was very much younger than 11 you know So yes, they they can be as normal as ever.

Nadine Vogel: Right yeah and I, and I think when we you know refer to the children as being you know typical and how they compare to the typical child, you know one of my, one of my, you know things is.

Nadine Vogel: What makes that child typical like why why, if they have special needs are they not typical right that distinction is always is always bothered because I also think that that sends a message.

Nadine Vogel: And not a message that we want now what I find really I want to say fascinating and overwhelming knowing about millie is that when you were doing all this.

Millicent: mm hmm.

Nadine Vogel: You had just experienced cancer, for the third time.

Millicent: Yes yeah.

Nadine Vogel: Right, I mean think it, you know norma, you know think how difficult it is, you have a child, born with a disability right you're not expecting it but could you imagine, having just gone through cancer three times and bringing all that in. All at the same.

Norma: Although I can't I can't and that's why I said that I really think people need to know that strength that you have to have gone through what you're going through and still.

Norma: Having the challenge of raising your son, who came to you know as a young boy, but who is you know needed all you needed all your help and how did you develop that strength. where do you think it came from.

Millicent: Well, that has to do with my faith in God.

Millicent: Because I got him when I deal with the third one.

Millicent: But after i've got and it was so funny in the year that I had to adopt him I had to get a clean bill of health which happened.

Millicent: And right after 2007 2008 the cancer return, one of the cancer return, because I have one the MALT lymphoma for me it's treatable but it's nagging it will come back time and time again, so it came back in 2008.

Millicent: And I don't think the doctor treated me properly that's my theory, because it came more aggressive in 2009 but like I said at that time, his brother was living next door, so I had a support system so.

Millicent: I was able to do, treatment and he was as long as his needs are met, he was quiet, he was helpful, he was very helpful.

Millicent: You could ask them to do things and he.

Millicent: would do it, he was a child who will keep his room clean that's what I loved about him.

Nadine Vogel: Wow.

Millicent: He would make his bed and his room had to be clean, so I didn't have any of that issue with him and he was helpful and oh go ahead.

Nadine Vogel: No, I was just gonna say we have to go to commercial break, but when we come back I norma I would love you know I believe millie has a book I would love to learn about the book and just.

Nadine Vogel: You know what let's talk about how you face cancer, not once, twice, three times, but if I understand correctly, five times.

Millicent: Five times right yeah.

Nadine Vogel: Oh my gosh. So for our audience, that alone should keep you at the edge of your seat don't go anywhere we'll be right back.

Voiceover: And now it's time for a commercial break.

Voiceover: And now back to our show.

Nadine Vogel: Hello hello, this is nadine vogel I am joined by my co host norma stanley hey norma.

Nadine Vogel: Hi, and we are bringing to you another great episode of disabled lives matter and just before we went to break I I put a teaser out there, but it's not it's reality.

Nadine Vogel: That our guest today Millie Barrett has experienced cancer five times, while caring for a child, with a disability and now has written a book so norm i'm going to turn it over to you.

Norma: Well, you know millie, we really need to understand and would love to be able to share with our audience, how you did it five times. is it the same cancer, are they different cancers. What happened?

Millicent: Okay.

Millicent: No it's three different cancer, but I went through cancer five times the first one that I got diagnosed with was a blood cancer.

Millicent: The MALT Lymphoma for me is considered to be treatable, but it can come back time and time again and, for some reason it came back in 2008 and 2009. 2009 they thought they we're going to lose me because the lymphoma.

Millicent: was in my lungs and it was so bad that the day when I left work and didn't return um I had so much pain in my back and luckily my nephew.

Millicent: Had just had a baby, so he was next door, I was able to call him to go upstairs my house and get my breathing treatment, so that was the first cancer, then I end up having breast cancer and my doctor had said to me, because you had that cancer you, you are 10% likely to get another cancer.

Millicent: So that keep me on alert.

Millicent: I was very attentive to my body which everyone should do that if you have any changes in the body check it out.

Norma: mm hmm.

Millicent: Know your body that well.

Millicent: [cough] Sorry.

Millicent: and um.

Millicent: So I had a pain.

Millicent: One evening when I came home from working in my right breast and I just finished my mammogram.

Millicent: And they did call me back for an ultrasound and they came to the conclusion that it was just a cyst.

Millicent: [cough] I'm sorry something. is tickling my throat.

Millicent: It was a cyst.

Millicent: So I went to my doctor right away, I did not wait.

Millicent: When I went to him that's when we notice there was a mass on my breast.

Norma: Wow.

Millicent: And he made an appointment for me to go see the surgeon breast surgeon, I made the appointment and while we're waiting for that appointment my mom died.

Norma: Wow.

Nadine Vogel: Oh my.

Millicent: So I had to cancel that appointment head to Jamaica to bury my mom.

Nadine Vogel: Oh my gosh.

Millicent: Yes, and then, when I came back, I went through a full mastectomy they take a breath off and I tried for the reconstruction that didn't work, so I was doing well.

Millicent: After.

Millicent: The breast cancer and something interesting which I placed in my book, which i'll talk to you a little about three years later I got uterine cancer.

Norma: Oooh.

Millicent: Yes, which one of the medication that I was taking to prevent a breast cancer from coming back when I read that bottle, it said a side effect was uterine cancer.

Norma: Yes.

Millicent: But I had a full hysterectomy I had surgery I didn't go through chemo for that, but it was shortly after I had May.

Millicent: May was when I had the surgery, and then my nephew which is Velair my son now father died that June so those were the things.

Norma: That was like a roller coaster of life. circumstances.

Millicent: Yes, so when I used to talk to people about these things they said you need to write a book and i'm like write the book I used to have problem writing in school.

Norma: mm hmm.

Millicent: But when I got my when they lymphoma came back, and that was a struggle, because I had a girlfriend who said to me.

Millicent: Because if the doctor treat you so many times, sometimes these doctors, just like give up on you and I could not believe those weren't came through.

Millicent: Because the doctor like send me off to somebody else, and I was like Why am I going to that doctor that doesn't make any sense.

Millicent: And when I got to that doctor's office I kept the appointment because I had a relationship with that doctor, he said, why did he send it to me, and when he called his office, he was like.

Millicent: He's out on vacation I left that doctor's office and I came home and I start making phone calls luckily, for me, I had insurance that would take me across state line to get. care.

Norma: Good yes.

Millicent: Many people don't have that you know, so I called and I called like three different I call the lymphoma society, this time and they gave me this idea of doctors who take care of lymphoma and I want to put this in there before I go any further, if you have a cancer.

Millicent: Look, for the oncologist that specializes in your type of cancer. It's much better than going to a general oncologist.

Millicent: The doctor I was seeing first was a general oncologist so practically didn't know what to do so, I got to another hospital and they told me, I was going to get six treatments and praise the Lord I only got four and knocking wood until today i'm doing well.

Millicent: Like I told you, I moved to Georgia and start asking questions about my son So while I was being treated that's when I started my book.

Millicent: And it's like everything got revealed to me, I came up with the title, which is the Faces of Struggles, such as cancers are on the journey to God's Glory.

Millicent: So in my book it just didn't talk about cancer, it talked about divorce, because I was going through divorce, too and I call that I cancer too because it's like everybody was going through some form of struggle with marriages during that time.

Norma: And still are.

Millicent: I put a page in there about my son, because I said God must have a reason to have kept me and took his parents so God have a greater purpose for him.

Millicent: To keep me to keep leading him to where he needs to go, because I was the first one in my family got diagnosed.

Millicent: With cancer and since then my mom my dad my brother and sister in law, all died from cancer and i'm still here, yes, so I put that in my book, a page, let me see if I can find a chapter, that I still.

Nadine Vogel: You know, adding to all of his.

Nadine Vogel: you've lost your support system of your family.

Norma: Right, right.

Millicent: Yeah.

Norma: But the strength that you have and the determination and the will to continue to make sure that Velair had he needed to have to maximize his potential, despite what you were going through.

Norma: that's an added level of strength and courage and determination that you know truly has to have faith based situation because.

Norma: So many people today don't have half the challenges but give up on their children, give up on themselves and that's one of the things that we have to be so aware and try to see if you can connect with some of these people who lose hope.

Millicent: Yes.

Nadine Vogel: And whether and whether it's your.

Nadine Vogel: Religion or spiritual or anything that anyone believes in it doesn't even matter as long as it has the impact.

Millicent: Yes.

Nadine Vogel: Right, and it has the outcomes that millie that you have, because I, you have a big smile, you know people can see you, you have a big smile on your.

Nadine Vogel: Face. A big beautiful smile and and you know I can tell that you practice this mantra of life is good.

Millicent: Yes, yeah.

Nadine Vogel: And I think to norma to your point, you know people will have you know, an infection in their toenail and suddenly life isn't good.

Nadine Vogel: You know glass half empty half full and.

Norma: Definitely. It's perspective.

Nadine Vogel: Yeah Thank you that's the word I couldn't think of it. Perspective.

Nadine Vogel: That that i'm hoping that through this show you're giving everyone.

Millicent: Yes, that chapter about Velair I call it a special assignment I received from God.

Norma: hmm.

Millicent: I see it as an assignment.

Millicent: from God that.

Millicent: it's my duty and my place to make sure that he has everything he needs, and you know to cut to almost to the end.

Millicent: I was one of the person who was God for Covid because he was keeping me busy he has a busy schedule, he has work now he works two days a week is a working man and he loves it.

Millicent: He goes to work, two days a week, he goes to Bowling one evening he has writing one evening he has a church activity another he had a paint class I used to go to a placce for cheerleading.

Millicent: Whatever other Community activity, he loves to dance, he will dance, as long as the music is playing.

Millicent: And, not to mention Norma got me.

Millicent: Our connection the way norma and I met is.

Norma: Oh-oh.

Millicent: Yes we were, and then we have been friends, since that day.

Norma: He's an amazing model.

Millicent: Model.

Norma: An amazing model.

Millicent: That i'm still waiting to see him go on the world stage, because.

Millicent: That's where I think he'll really end up one of these days.

Norma: Yeah.

Millicent: He just loves it and then miss Sharon, let him do whatever he wants to do i'm trying to get him to do more.

Millicent: manly style walking straight down the aisle.

Norma: He does have a flare.

Millicent: He has a flare about it and they love it and he loves it he just and he loves to dress up so almost every Sunday he wears a suit to church.

Nadine Vogel: Wow.

Millicent: So I figured we could get suits to buy very cheap.

Nadine Vogel: um hmm.

Millicent: I go to the goodwill and get him suited out.

Nadine Vogel: Right.

Millicent: Like he has about seven different suits right now and.

Nadine Vogel: Wow. Isn't that amazing.

Millicent: He wears a suit Every Sunday to church and he loves when he received compliment about it.

Norma: Oh yeah they could tell when they looked and.

Norma: That's a lot of what we try to do like you said we tell the stories here.

Norma: On disabled lives matter and and hope that people can see that these communities that just like all of us that, just like everybody else, and we want our family members to live.

Norma: Their best life, just like we do and we got to do what it takes to make sure that happens because that's how we are, we are you know we have mothers were advocates, we are people who want to see see change positive for our community.

Norma: That's what this is about.

Millicent: What I realized is that.

Millicent: moving around the disability Community a lot of people didn't know a lot of stuff that are available.

Millicent: For them.

Nadine Vogel: Right.

Millicent: They like, how you know so much, but because I didn't birth, a child who was disabled I was gifted a child who was disabled.

Millicent: And like I told it's my responsibility for him to have the best life possible so I was going to meetings like once a week I had to go to meetings now because I kind of get what I need for him.

Nadine Vogel: Sure. Absolutely.

Nadine Vogel: Well Millie I just have to say, you know I know that that you feel very lucky.

Nadine Vogel: To have your son to have Velair but I gotta say I he's really lucky to have you he's really lucky, and I think that all of our listeners are better off because of hearing your story today.

Millicent: Thank you.

Nadine Vogel: So, unfortunately, we are out of time, I cannot believe the time.

Norma: It goes fast.

Nadine Vogel: I, but I just want to thank you.

Nadine Vogel: So much for for sharing your story for sharing about your book.

Nadine Vogel: and hopefully you'll keep in touch with us.

Nadine Vogel: And let us.

Nadine Vogel: know how things are coming along.

Millicent: Yes, well, thank you for having me, and now I can give you more of an update if anybody need information about the book.

Norma: Well give them the website real quick.

Norma: Was it.

Nadine Vogel: Right.

Millicent: It's on Amazon, but because I had to change publisher you have to get the one that is written by.

Millicent: lulu. Published by.

Millicent: lulu.com and you can go to that directly website lulu.com and get it.

Nadine Vogel: Okay.

Millicent: You can go to Amazon, but I rather you to lulu as you'll definitely find the correct one.

Nadine Vogel: At all thank you again millie and have a fabulous week.

Millicent: Thank you too for having me.

Nadine Vogel: Absolutely to our listeners.

Nadine Vogel: Thank you for joining us once again norma Thank you amazing co-host that I have and we look forward to the next episode of disabled lives matter bye everybody.

Norma: Be blessed everybody.

Millicent: Bye bye.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Season 02, Episode 13 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Shelly Simmons

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.

Nadine Vogel: Hello everyone, this is nadine vogel and I am your co host of disabled lives matter we are a podcast, but we are more than a podcast we are a movement and joining me in this movement is my lovely co host norma.

Norma: hi everybody.

Nadine Vogel: Hey norma how's it going.

Norma: it's going great going great looking forward to speaking with our guest today.

Nadine Vogel: Absolutely cuz I gotta tell you with all the crazy things going on in the world, we can take a breath and interview someone who is doing amazing things right all positive. So Shelly Simmons. Shelly, thank you for joining us today.

Shelly Simmons: Thank you so much for having me. uh this is something that's new for me, so I appreciate your patience.

Nadine Vogel: Absolutely so Shelly you're the executive director at the statewide independent living Council in Georgia so tell us first you know what does the independent living Council do, what is your mission.

Shelly Simmons: Well, the statewide independent living Council we are a federally mandated organization so every state and territory in the United States has a S-I-L-C Office what we refer to as "silk".

Shelly Simmons: It is our main responsibility to develop our state plan for Independent Living, and this is a guy that we work closely with with our Center for independent living.

Shelly Simmons: Who are the service providers in order to address some of the needs that are going on within our state, we also work very closely with our legislature.

Shelly Simmons: To help create policy change that will benefit individuals with disabilities and when Then again, we also work with some of our state agencies, like our vocational rehabilitation our GA advocacy office and our Council on developmental disability.

Nadine Vogel: Got it got it now are all um silcs as you call them are all of them, the same, since, since it is federally funded are all of them the same throughout the country in terms of the mission and what they do, how they do it.

Shelly Simmons: Well, the mission can be different.

Shelly Simmons: And again, that kind of comes up when.

Shelly Simmons: you're developing your state plan what your mission will actually be ours is just to make sure that individuals with disabilities are.

Shelly Simmons: included within and can equally participate within their communities.

Shelly Simmons: For each.

Shelly Simmons: So each silc office can have, and they all do have different mission plans.

Shelly Simmons: And again, that all depends on what's going on within their state.

Nadine Vogel: Okay, so, even though it's federally funded it's more state driven.

Shelly Simmons: Correct .

Nadine Vogel: Got it got it are there are there criteria to be able to make use of the services.

Shelly Simmons: Well, for us, we don't provide direct service we're not the direct service provider, ours is more of a policy driven entity so.

Shelly Simmons: We provide also support to our Centers for Independent Living, so we're just trying to make sure that they have what they need in order for them to work with the consumer or their or their clientele.

Nadine Vogel: So, can you tell us the difference between what you do and then what the centers do and how you're all related.

Shelly Simmons: Absolutely, they the centers are kind of umbrellaed under us again we're policy driven, so we will try our best to advocate and educate the legislature, on what the needs are.

Shelly Simmons: For the centers to be able to do business trying to make sure that we have the right funding in place so that the centers can do what they need to do, we will also take on larger issues again that will cover the entire state.

Shelly Simmons: Here in Georgia, we have nine centers for Independent Living, and most of them cover several counties and then we have an area that's not being serviced at all, and we call that the unserved, or the wide area, and so what i'd like to do is.

Shelly Simmons: i'm trying to make sure that the state has full coverage and so. Those are some things that the SILC office will do.

Shelly Simmons: And then again transportation housing, employment. Those are some of the biggest things that we deal with in most them SILC offices and then some some of the same.

Shelly Simmons: issues and barriers that people with disabilities face so here in Georgia, one of our goals and objectives is to make sure that we have affordable and accessible housing.

Shelly Simmons: And so we try to work with developers and try to see how we can work closely together in order for new construction to go up for not segregated housing, but more inclusive housing, but to make sure that these things are affordable and accessible.

Norma: That's awesome.

Shelly Simmons: Our Centers for Independent Living, they are the consumer driven entity, so the centers may actually provide five core services.

Shelly Simmons: Information and referral, independent living skills training, peer support, and i'm gonna i'm now gonna forget a couple of them transition for individuals who are either transitioning from my high school to adulthood and also nursing home transition, and the fifth core service.

Shelly Simmons: Oh. system and individual advocacy.

Nadine Vogel: OK.

Shelly Simmons: So somebody has an issue the center will work with them to help educate them on whom they need to contact and what they need to do in order to do that, but each Center also has its own unique.

Shelly Simmons: spin and services and, depending on the region will determine what other services are being provided, but all five see there are five core services have to be fulfilled within the nine centers.

Nadine Vogel: got it it's it's again just based on premise it's for adults right, so it would be 18 and over 21 and over.

Shelly Simmons: No, in fact, we have a kind of a model here from the womb to the tomb.

Shelly Simmons: For anybody newly disabled, or a parent who might be have a child with a disability and just doesn't know about the resources that are out there and available, so no, we will work with anyone.

Nadine Vogel: So and that's from a policy standpoint, as well as from a Center standpoint?

Shelly Simmons: Correct.

Nadine Vogel: Wow I I did not realize that, so you know i'm on my familiarity with independent living centers is more in California.

Nadine Vogel: In Florida and and so you're right they do, where I had no idea I thought every one was the same.

Nadine Vogel: So this is this is really amazing to know um and the policies that you develop I mean obviously the centers because they are consumer driven they hear directly from families from individuals with disabilities, so they know what's needed.

Shelly Simmons: Yes.

Nadine Vogel: Right at that level from a state level from a policy perspective, how do you, do you kind of hear what's going on at the Center level that rolls up and that's how you determine what you all need to do, or is it a different process.

Shelly Simmons: Well, for us and for me what I typically done, I will hold.

Shelly Simmons: Excuse me, town hall meetings around the state and I usually do that in preparation of developing our state plan so i'll state plan is every three years, and seems like we all wish that we could change that to five years.

Shelly Simmons: Because as soon as you get going and one. It's time to develop another one.

Shelly Simmons: And that's where we are right now we're in year two, and so I will be sometime this summer early fall doing town hall events around the state.

Shelly Simmons: In a way of spreading that we have virtual options, now that we can hear from more individuals and then we'll take the top three or four.

Shelly Simmons: and try to develop our state plan around that my mom also had a really good relationship with our Center diretors and also fund monthly meetings with them were able to kind of determine what are some of the main things that we need to focus on

Nadine Vogel: okay.

Nadine Vogel: And just like you said it's from you know birth to death right it covers all ages now at the Center level is there any criteria either financial or otherwise that someone needs to meet in order to receive services.

Shelly Simmons: They just need to have a disability.

Nadine Vogel: Disability of any type.

Shelly Simmons: Of any type.

Nadine Vogel: wow.

Shelly Simmons: Well you know some of the other state.

Shelly Simmons: organizations like our Council on developmental disability they mainly deal with D-D-D.

Shelly Simmons: I should say developmental disability and.

Shelly Simmons: intellectual disability i'm sorry, you know we live in a world of acronyms I have to be.

Shelly Simmons: Concious of what I say i'm in some way but there's anybody now, we may not be able to provide say the right service, and we will make those referrals and provide resources, but no, there is nothing required other than having a disability.

Norma: Can I ask a question?

Shelly Simmons: Yes.

Norma: Somebody called me not too long ago about she has a daughter, who has physical and intellectual disabilities, she went to college and um.

Norma: In a car accident, and has been you know basically disabled ever since and she's in her 20s and her mother's trying to make the home.

Norma: Really comfortable for her sensory issues and things like that and she's having issues with the H-O-A in whatever she's trying to do, in her front area.

Norma: For her daughter and she's trying to figure out who she should talk to about that and I think I may have referred her to your organization, but I I can't imagine the H-O-A would be so.

Norma: They don't seem to really have a sensitivity.

Norma: to that.

Norma: And I was just wondering, is that something that your organization will help address or refer or How does that work because H-O-As.

Norma: To me a little bit intrusive but how does that work, I mean she's on her own property trying to put in something on her yard that her daughter would enjoy from a sensory standpoint, as well as i'm not quite all sure, but somehow the H-O-A is not happy with it, and they're not responding to her you know.

Nadine Vogel: H-O-As, H-O-As have a life of their own, I can tell you.

Norma. Ah.

Nadine Vogel: But Shirley i'm just wondering if that wouldn't be a protection and advocacy.

Norma: right.

Shelly Simmons: It would even for here in Georgia, our metro fair housing. That could be an.

Shelly Simmons: issue that they will take on.

Shelly Simmons: And we will refer that.

Shelly Simmons: individual to them in order to get the.

Shelly Simmons: The proper and correct guidance on how to address that. Ah granted H-O-As have and mainly I believe that it can be, for you know aesthetics how and made to look or anything like but as a reasonable accommodation she just has to be willing to kind of apply for it.

Norma: Yeah.

Shelly Simmons: But the metro fair housing will be a good option for her. too.

Nadine Vogel: Yeah the HOA um because we've actually had some involvement with that and.

Nadine Vogel: to your point shelley you know they look at aesthetics, they look at other things, and say they have a responsibility to the whole place and because it's private and it's not public, they don't even have to they don't fall under the ADA.

Shelly Simmons: Yeah.

Norma: Wow.

Shelly Simmons: That's true.

Nadine Vogel: Which is even just crazier, in my opinion, but.

Shelly Simmons: And I and again i'm thinking will be, and it will just mean some advocacy work for her.

Shelly Simmons: To speak with some of her neighbors.

Shelly Simmons: To say hey you know, this is what i'm trying to do and find out what why, are they so opposed to this.

Shelly Simmons: She really just needs to get out there and speak with her and even possibly present plans on what it might look like.

Shelly Simmons: Cause, you know you you hear one thing.

Shelly Simmons: But to actually see it could be something else may not be as overwhelming as they think it mgiht be.

Nadine Vogel: Norma, i'm so glad you brought that up because you know that's a topic that we've not addressed. in the past.

Nadine Vogel: And one I think that we should actually think about maybe even having a session, you know, on that because.

Nadine Vogel: People really confused about that a lot of people live in condos and buildings that have associations and board of directors and most of we find don't know what their rights are.

Nadine Vogel: And where they can go to get help, so we are on at that point where we need to take a short commercial break so let's do that and for our listeners don't go anywhere, we have more to talk about with shelly simmons be right back.

Voiceover: And now it's time for a commercial break.

Voiceover: And now back to our show.

Nadine Vogel: Hello Hello everyone welcome back this is needing vogel i'm here with my Pal my co host norma stanley.

Norma. Hey guys.

Nadine Vogel: And we are talking with shelly simmons today and having.

Nadine Vogel: Just a fabulous discussion about you know independent living Council specifically the one in Georgia, the statewide but also independent living centers and how they all work together um.

Nadine Vogel: You mentioned shelley before the break about housing.

Nadine Vogel: That you know, having appropriate housing having enough housing so i'm just wondering if you can elaborate either on that or on some other initiatives.

Nadine Vogel: programs that you think are really important that you guys are focusing on because I want to talk about some barriers that exist, and I do you think housing is one of those barriers, I think it kind of connects.

Shelly Simmons: Absolutely, in fact, most of the barriers that people with disabilities encounter they all intersect and housing, nothing can be more critical well.

Shelly Simmons: They have some other things, of course, but.

Shelly Simmons: housing and I don't know you know how familiar, you are with the the, especially in the metro area of Atlanta the landscaping has changed and it's changing. There are cranes all over the place and it's all for luxury housing.

Nadine Vogel: Yes.

Shelly Simmons: So people with disabilities are being forced out of areas that have little to no transportation.

Shelly Simmons: Less access to resources like the grocery store or maybe even family and that's because of housing has become so unaffordable for many.

Shelly Simmons: Although people disabilities may be working there's a large population are relying on fixed incomes their social security or SSI or anything like that, and so their options are very limited, and so it is our desire to work with.

Shelly Simmons: Various developers and try to really advocate for more affordable and accessible housing, especially for individuals who may have sensory or physical disabilities a lot of these units, do not.

Shelly Simmons: exist, and once somebody gets into a unit and if it happens to be within an apartment complex they end up staying there because the stock is so limited.

Shelly Simmons: They can't afford to go anywhere else, and so we're just trying to change that conversation not only with our city leaders, but also with various developers and saying that we can make this happen now.

Shelly Simmons: You know, we might be able to catch up.

Shelly Simmons: The demographic is changing people are living longer, you know, and so we need to be able to make sure that we can accommodate everyone.

Shelly Simmons: And and with properties that are mixtures regardless of your income, and you will be able to stay with somebody else and may be at the very top of the chain, and with that we really try to promote inclusion So those are some things that we're working on.

Nadine Vogel: Yeah with housing too. Norma, you know if you think about it, and you know i'll just speak for myself, I won't speak for you two, but I am not getting any younger.

Norma: Exactly.

Norma: We are all going to be seniors at some point.

Nadine Vogel: The population is aging.

Norma. Absolutely.

Nadine Vogel: I'm amazed when you bring up about accessibility right it's not necessarily just for someone who has a disability today.

Norma. Exactly.

Nadine Vogel: Or was born with. It could be someone that has an age related or develops age related disability later in life, you know i'm amazed i'll just share, you know when I go to a hotel I travel a lot for business.

Nadine Vogel: And when I go to a hotel i'm amazed when they don't have the magnification mirrors right i'm like I can't see anything I can't lean over I can't see like something even as simple as that.

Nadine Vogel: Right and.

Nadine Vogel: Obviously, many others that I do think that this accessibility issue is so critical now i'm curious, how are the developers responding.

Norma: Right.

Shelly Simmons: We've actually, had a few developers that are very receptive there is one particular group L-D, as in dog D, G as in George was actually has various properties around our state.

Shelly Simmons: They reached out to us and, at the time, my housing coordinator and I we went to the property and was able to tour it and offer suggestions on more accessibility and they were very open to that in fact.

Shelly Simmons: I will be meeting with them on this Friday, they have a new property just outside.

Shelly Simmons: Our metro area well it's in the metro area, but just outside the city and it's in development and they've taken a lot of our suggestions into play, and also we're going to be meeting with.

Shelly Simmons: county housing authority Dekalb county housing authority to talk about waivers and or vouchers I should say.

Shelly Simmons: For individuals with disabilities, and getting together a waiting list for this affordable, accessible housing. So, they've been very receptive, then I think I may bring in a couple other people other developers to this meeting, in hopes of really seeing the need and again, as you were saying.

Shelly Simmons: Our people our aging, and I want to be able to age in place, and all that should be done in safe areas and.

Shelly Simmons: When developments that are new and clean are tearing one down and that's what that's what the narrative that we're. Trying to change.

Nadine Vogel: and you know for norma for you, for me, you know we're moms have adult daughters with disabilities and you know we would want to know that our daughters potentially could could live in these places.

Nadine Vogel: And I think it's an issue of of avoiding segregation as well, right, that you know it doesn't have to be and we don't want it to be a development of just people with disabilities.

Nadine Vogel: You want it, norma, I mean you want an integrated right.

Norma: absolutely.

Shelly Simmons: Absolutely

Shelly Simmons: Absolutely and I think that's, the only way that we can.

Shelly Simmons: continue to learn from another one.

Shelly Simmons: learn from each other, continue to always learn and not completely lose our compassion for one another and that's the only way that's going to happen is to be integrated into the Community and.

Shelly Simmons: And just realize when people say Oh, you know, maybe I get around a little bit differently, but you know my desires and needs are exactly what yours are so yeah full integration absolutely.

Nadine Vogel: And it was about transportation right, because one of the challenges for people, especially with physical disabilities right they you know they want to.

Nadine Vogel: live in their own home and live in a nice new development, but we do find as new developments crop up, especially as we get further and further outside a metro area in particular, you know doesn't matter where we are in the country transportation. is difficult to access.

Norma: yes, it's a real issue.

Shelly Simmons: Absolutely.

Nadine Vogel: So, is that part of this discussion that you take on.

Shelly Simmons: Absolutely in fact we've been able to work with.

Shelly Simmons: What they call A-R-C the Atlanta regional Commission, I have a really good mobility coordinator.

Shelly Simmons: And she pretty much covers everything transit mobility buttons on the plane a walkable sidewalks anything of that nature and, as you mentioned once we come outside the metro area there's very few options and so we're working.

Shelly Simmons: With the various counties trying to get pilot programs up or micro.

Shelly Simmons: Excuse me on demand transportation pretty much when you can you know make that call and be able to set up transportation within a couple hours.

Nadine Vogel: I mean, I remember I lived in Los Angeles, many years ago and and.

Nadine Vogel: They were very forward thinking for Independent Living centers and things at that time and i'm going back now like 30 years ago 25 years ago.

Nadine Vogel: And I remember, there was so successful, but then the transportation issue, because even even in the metro you know LA, especially in those days, there was no public transportation line at all and.

Shelly Simmons: LA is my home.

Nadine Vogel: Well, okay, we can have a conversation about that.

Nadine Vogel: So if you, you know just we only have literally like three minutes left four minutes left um but you know just looking forward.

Nadine Vogel: Next, you know one year three year what, what are the one or two things that really jumped out at you that that you need to be focused on because of the barriers either either, because the barriers that are out there, because the opportunities that you see.

Shelly Simmons: And unfortunately they just never seem to change, you know housing is still a big thing we actually have a program.

Shelly Simmons: With acronym of H-A-T, and it's Home Accessible.

Shelly Simmons: yeah Home Accessible Program and basically we received funding from our department of Community affairs to help.

Shelly Simmons: With accessibility issues for individuals with disabilities and we make it very simple for people to qualify for home modifications, whether that is a new bathroom what the role is shower, winding doors opening up.

Shelly Simmons: modular ramps, and so we.

Shelly Simmons: were doing very, very well we've had a couple of hundred thousand dollars.

Shelly Simmons: But that has drop down to one hundred that was another thing that we were trying to educate an advocate more for because we have over 700 individuals waiting for home modifications.

Shelly Simmons: That simply cannot afford it so bad hundred thousand dollars doesn't go very far.

Shelly Simmons: Employment is a big issue for us as well.

Shelly Simmons: Especially by individuals who may participate in some of our waiver progreams you know their caps and such poverty levels that.

Shelly Simmons: You know, it almost doesn't make sense to go to work for people disabilities, want to work, but if they go to work and earn too much money then they're cut-off of that waiver so that's policy that we're trying to change.

Nadine Vogel: i'd like to lead that change.

Shelly Simmons: And I think a lot of things.

Shelly Simmons: You know we would like to see as well we're trying to model some other states like Washington State Maryland I think Arkansas might have a good Program.

Shelly Simmons: And somewhere in trying to do some of those things so it's always something about housing transportation i'm hoping that some of these micro transit pilots will be up and running.

Shelly Simmons: and

Shelly Simmons: county officials and state officials will see actually how you can add not only for people disabilities or people who are aging, but just for the Community as a whole to be able to access the resources within their own community so.

Shelly Simmons: i'm always something to do.

Nadine Vogel: always something to do so, we have about one minute left norma any final question or comment you'd like to address.

Norma: No, I just didn't have I had no idea of the extent of what you guys did that was really very cool and to learn about, and you know i'm looking forward to you know possibly checking out some of those programs for those senior citizens like myself.

Shelly Simmons: Absolutely, you reach out to us anytime.

Shelly Simmons: We're the best kept secret.

Nadine Vogel: There you go let's change that right.

Nadine Vogel: Now Shelly someone wants to reach you guys, how do we do it.

Shelly Simmons: Well, you can just visit us on our website at S-I-L-C-G-A.ORG or look up the independent living Council of Georgia, you can call us at 770-270-6860 and you'll be able to reach us at any time.

Nadine Vogel: And if someone is what if our listeners say Okay, I want to reach you guys, but I'm in Florida, would it be S-I-L-C-F-L.ORG.

Shelly Simmons: that's correct.

Nadine Vogel: Okay yeah I figured that out.

Nadine Vogel: For listeners depending what state you're in that's the formula to follow, I do hope that you will reach out to one of these agencies in your state, because it sounds like.

Nadine Vogel: there's some amazing amazing services that you all, provide that like you said you're the best kept secret and we gotta change that.

Nadine Vogel: So, shelly thank you so much for.

Nadine Vogel: joining us.

Shelly Simmons: Thank you ladies.

Nadine Vogel: Norma Thank you, as always.

Norma: Thank you guys look forward to the next one.

Nadine Vogel: See you next time on disabled lives matter bye bye.

Norma: bye bye everyone.

Shelly Simmons: Bye bye.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Season 02, Episode 12 Co-Hosts: Nadine Vogel & Norma Stanley Guest: DJ Hear No Evil

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.

Nadine Vogel: Hello everyone and welcome to tonight's episode of disabled lives matter. Yes, this is a podcast but it's more than a podcast You all know the answer it's a movement, and I am joined tonight by my fabulous co-host Norma Stanley hey Norma.

Norma: hey how is everybody doing today.

Nadine Vogel: Good i'm doing really great knowing who we are interviewing tonight, DJ Hear No Evil. Well I just love the name just to. start.

Nadine Vogel: So Norma why don't you take us away.

Norma: Well I’m excited that we do have Mr. Anton DJ Hear No Evil Abraham, also known as the Silent Assassin, which we got to know what that came from.

Norma: He is a deaf DJ, who is here to breakdown some barriers and take the music industry by storm and I am loving every moment of that so I can’t wait for you to share what your life story is all about, thank you for being on Disabled Lives Matter today.

DJ Hear No Evil: yeah, thank you for having me. I am pleased that you guys invited me to tell.

DJ Hear No Evil: my story.

Norma: Absolutely absolutely well you know in reading your bio I have to say that we have something in common.

Norma: We’re both from Mount Vernon New York.

Norma: I grew up in Mount Vernon too. I actually moved there when I was 16 so I lived on North Lincoln Avenue I don't know if you know what that is.

DJ Hear No Evil: yeah I know. Yeah.

DJ Hear No Evil: yeah that’s where I lived most of my life in Westchester county.

Norma: Yes, yes, yes.

Norma: And you know they refer to Mount Vernon as Money Earnin’ Mount Vernon because so many celebrities have come out of Mount Vernon and you know people like Denzel Washington Sidney Poitier used to live there Ruby Dee live there.

Norma: And Heavy D. the rapper.

Norma: grew up there, my sister actually went to school with him so many, many um what’s his name, Al B. Sure came from Mount Vernon.

Norma: Yes, yes.

Norma: So I wanted to be one of those people one day, but nobody knows who I am but.

Norma: I love the idea that grew up in Mount Vernon with all those money earning people.

DJ Hear No Evil: That’s right. We have to represent our hometown you know.

Norma: You Mary J Blige is not from Mount Vernon, but she was from Yonkers.

Norma: It’s still Westchester county.

DJ Hear No Evil: yeah yeah, you can say that.

Nadine Vogel: Pressure, a lot of pressure on you.

Nadine Vogel: Just saying.

Norma: It’s a lot. Well, you know I’m so excited to learn about your story you.

Norma: have done a lot in your career and in starting your brand as DJ Hear No Evil, first of all, how did you come across the name and how did you even get started in the DJ space.

DJ Hear No Evil: Okay, so DJ Hear No Evil was given by my fraternity, Alpha Phi Alpha

DJ Hear No Evil: Fraternity incorporated, which I pledged during college.

DJ Hear No Evil: So they gave me the name Hear No Evil.

DJ Hear No Evil: So I took that name, Hear No Evil as it represents who I am, i'm hard of hearing myself even though I could say I’m deaf.

DJ Hear No Evil: I am hard of hearing in a deaf world and hearing world which I am in both worlds. So.

DJ Hear No Evil: I represent both. The old DJ name was DJ Ant, A-TON-Ant, and my father was like what are you going to do with that name.

DJ Hear No Evil: I like that name, but that’s my government name, and I don’t want to use my government name.

DJ Hear No Evil: So as it, as time goes on, it was given to me by my fraternity, it represents who I am.

Norma: awesome.

Norma: awesome and so tell us you know.

Norma: Since you started this game, first of all, how did you get into the DJ space.

Norma: How did that begin.

DJ Hear No Evil: Oh.

DJ Hear No Evil: I started picking up the DJ-ing.

DJ Hear No Evil: At the age of thirteen.

DJ Hear No Evil: Because my father was a DJ himself.

DJ Hear No Evil: He was a DJ, he was a basketball player, he did a lot of stuff so I got into the DJ game because my dad would DJ events like a club, bar so forth, so I had to go with him to see what he does.

Norma: Okay.

DJ Hear No Evil: Or how he rocked the party, how he was meeting people, you know how did he was able to get more gigs. In the local area and also outside Mount Vernon.

DJ Hear No Evil: You know, like in different states, so I’ve tried to pick it up from there since the age of thirteen so as time went on I practiced and started to have my own parties, and then had my own parties in college.

DJ Hear No Evil: My first freshman year. Yeah, it was my freshman year.

DJ Hear No Evil: Where I threw my own party at someone at the apartment, it was late, you know.

DJ Hear No Evil: and the cops had come.

DJ Hear No Evil: I’m sure you know at a party.

DJ Hear No Evil: You know how that goes.

DJ Hear No Evil: So yeah that’s how I picked it up from my father.

Norma: Awesome. So it's a family business in a way.

DJ Hear No Evil: Yeah, basically.

Norma: That’s really cool and so, you said that your bio talks about you, using your hands to express yourself how do you say how does that work, because DJ-ing is an art.

DJ Hear No Evil: Um yes. I mean the movement is art.

DJ Hear No Evil: It’s a form of expression the way you can express yourself.

DJ Hear No Evil: It’s about how you rap, think about the night.

DJ Hear No Evil: the background or, whatever the case, might be, so that same concept, I let my hands speak.

DJ Hear No Evil: Because I don’t always speak on the microphone, I use my hands. So that tells the story.

Norma: Okay. Okay.

Norma: That's pretty cool so is that particular genre of music that gets you more excited than other types of music or is you just like whatever is out there.

DJ Hear No Evil: Well, I’m more into like hip hop.

DJ Hear No Evil: Yeah I pick up on the music of my family background my mother is Jamaican, and my father is Dominican.

DJ Hear No Evil: We do have some Hispanic family. some hip hop family and some you know, Jamaican family so I started picking up the different music and genres, I have to play different music and genres, because we need to be diversified.

DJ Hear No Evil: Like I mean if we go to a party, and nothing against, but if someone were to hire you to do a Bar Mitzvah.

DJ Hear No Evil: Nobody’s doing hip hop too much, but mix the music with pop music or rock-n-roll. So you have to have that in the folder.

DJ Hear No Evil: Basically what I’m trying to say is that we have to be ready whatever the matter. Yeah.

Norma: awesome, awesome.

Nadine Vogel: I have a question um my understanding is that you have won some DJ battles, I think, actually you've won two of them right, I think you the first Black Deaf hard of hearing DJ to win these battles which.

Nadine Vogel: sounds amazing.

Nadine Vogel: Maybe you could tell us what is a DJ battle.

DJ Hear No Evil: Okay, so.

DJ Hear No Evil: Those who are diversified battle about it. Basically what I did was get another DJ, with a regular turntable like this.

DJ Hear No Evil: Yeah I’m sure you’ve seen some movie called Juice.

DJ Hear No Evil: About a DJ battle, where they go back and forth.

DJ Hear No Evil: With the tricks.

DJ Hear No Evil: You know with the name calling or whatever is done going back and forth.

DJ Hear No Evil: Same concept.

DJ Hear No Evil: Same concept, so I battle against so my both battles were with about 20 DJs.

DJ Hear No Evil: 20 DJs, so I mean look at look it was pressure yes, but everyone knew I was nervous, but at the same time I still have the confidence.

DJ Hear No Evil: I had the confidence and was going on, and then you know like the rocket you know of 20 DJs, you know 10-9-8 whatever the bracket set and it came to the final.

DJ Hear No Evil: Later to find out that I couldn’t believe I made it to the final.

DJ Hear No Evil: I didn’t think, I didn’t think I was going to win.

DJ Hear No Evil: Because I wasn’t sure of myself. So time goes on.

DJ Hear No Evil: I went to work in.

DJ Hear No Evil: Brooklyn.

DJ Hear No Evil: Which is in New York City.

Nadine Vogel: Yes. Brooklyn.

DJ Hear No Evil: I had to battle against a DJ from North Carolina.

Norma: Okay.

DJ Hear No Evil: So.

DJ Hear No Evil: He had made it to the final to battle against me. So I said okay. He’s from North Carolina and I’m from New York City.

DJ Hear No Evil: So I have to represent.

DJ Hear No Evil: New York City. And Mount Vernon I have to. So I was going in, it was hard. It was hard..

DJ Hear No Evil: Until you get to the final round.

DJ Hear No Evil: And then, I didn’t even practice that part, I figured it would come out of my head, because I play the music in my head. You know what I’m going to do this, I’m going to play the music in my head. So I said, okay. and then I’ll put it in order with my remix and with some tricks.

DJ Hear No Evil: And got the people to go crazy because it just happens even though my mind was locked up.

DJ Hear No Evil: But I was going in and then you know from then I rocked. It was an amazing feeling, amazing feeling.

Norma: I’m sure.

DJ Hear No Evil: And then the second battle.

DJ Hear No Evil: It was in New York City as well.

DJ Hear No Evil: but it was a good battle and captured the W.

DJ Hear No Evil: But then it was a little different because it was more party rocking. So it’s a little different. So same situations with the countdown.

DJ Hear No Evil: I wind up out of it. I did improve by the two DJ battles, but I did not win. I came in like in fourth place, and then in 10th place. Because I kept going. I kept going until I won.

DJ Hear No Evil: Am I satisfied, no I am not satisfied, I want to win some more.

DJ Hear No Evil: So the reason I want to win some more is I want to try to break the barriers. So people like me the deaf and hard of hearing can do anything. I’m not talking about to DJ, but in general.

DJ Hear No Evil: Like to dance. A lawyer, business.

DJ Hear No Evil: You know TV acting, TV shows, movies, all that. So we have to break the barriers so that people can use us and we can work together.

DJ Hear No Evil: If that makes sense to you.

Norma: Awesome, awesome, and so I would like to know.

Norma: See one of my questions is um.

Norma: The obstacles obviously you had to deal with is that you are hard of hearing what kind of obstacles, did you have to overcome, to be able to get to where you are now you know after you won some of those battles.

Norma: You know now you’re a professional at it what kind of obstacles, did you meet as you were climbing the ladder.

DJ Hear No Evil: Well I would say the top two.

DJ Hear No Evil: One is communication. That’s number one, that’s very, I mean that’s where we had an issue with it, I mean it’s been going on for years. For years.

DJ Hear No Evil: And number two is my ear, so I don't hear everything so that’s why I have to use my eyes.

DJ Hear No Evil: So to communicate. So if I communicate with you I used them to read lips. I can here too, but I can read lips.

DJ Hear No Evil: So I can make sure it fits what I think is what you are saying.

DJ Hear No Evil: So those are my top two I’m facing right now.

DJ Hear No Evil: So people are thinking, oh he’s deaf so put him to the side.

DJ Hear No Evil: No I’m ready to work.

DJ Hear No Evil: You know because I mean I have, I have been I’ve the mindset I'm intelligent, so use me. because I can make you money you can make me money so let’s do it.

DJ Hear No Evil: So that’s one of my top two strategies I’m breaking through right now.

Nadine Vogel: Yeah it is it you know it's in many ways it's not your barrier right it's the barrier of others, there are barriers of thought they can't get past because they know someone has a disability right they make X assumptions and they just can't get past that but, but you doing what you do.

Nadine Vogel: You force them to get past it.

Nadine Vogel: You force them to see beyond disability and I think that's what everybody needs.

DJ Hear No Evil: Right. Most definitely most definitely because we.

DJ Hear No Evil: all have different strategies, so we have to break the barrier, I mean it’s 2022 it’s not like it’s 1960s where Martin Luther King has to fight for our rights, now people want to put their news.

DJ Hear No Evil: in the digital age, because the news and social media is powerful. So work with us, we know what you are doing.

DJ Hear No Evil: You know we’re not that dumb. You know.

Norma: Awesome so tell us. Who are.

Norma: Some of your favorite artists that you like to play, because obviously you do world music.

Norma: Because like you say coming from the Caribbean and the Hispanic community and the Latino community and so there's a lot of different types of music that you probably play, but who are some of your artists that you kind of prefer to to play when you're doing your DJ-ing.

DJ Hear No Evil: So.

DJ Hear No Evil: The DJs that impact.

DJ Hear No Evil: Making the difference, I would say, it’s hard to pick on, one of the top DJs, I would say is DJ Scratch. He’s from New York City. He changed the game and he kept the turntablism running.

DJ Hear No Evil: He DJs for the big artists like Busta Rhymes, LL Cool J, so forth, so he teaches where turntables and music actually are coming from.

DJ Hear No Evil: That will make me go more deep about the music. That is what my father taught me which is cool, but he did say that we have to understand.

DJ Hear No Evil: where the music comes from where it originates. So I, no doubt, started to understand more about that from DJ Scratch

DJ Hear No Evil: Now other artists like rappers, singers.

DJ Hear No Evil: You know, I have to say.

DJ Hear No Evil: Jay-z. Jay-z is a rapper. He tells a story.

DJ Hear No Evil: He had more than 1 billion, he has a clothes business.

DJ Hear No Evil: he is a part owner

DJ Hear No Evil:: of Brooklyn Nets team.

Norma: Oh wow.

DJ Hear No Evil: So what I’m trying to say is. The sky's the limit.

DJ Hear No Evil: So there’s more than one thing you can do, because you can’t just focus on one thing. Because we have to have different avenues where you can add to your resume.

DJ Hear No Evil: So people can respect you for more than what you're doing.

Nadine Vogel: I have to step in, because we must go to commercial break I’m just summarize, but the conversation I’m not even paying attention to the time.

Nadine Vogel: We need to go to a quick commercial break so for our listeners stay tuned Norma and I and our DJ Hear No Evil we'll be right back.

Voiceover: And now it's time for a commercial break.

[COMMERCIAL] Have you attended a springboard Consulting event? Well, you should, we have the best events and our 2022 events are just under way. Firstly is the BRG Summit happening on Tuesday, April 26th, and then following that is Disability Matters. North America Conference and Awards that's happening Wednesday and Thursday, April 27 and 28. Both events are being delivered by a live stream. If interested in attending, please visit www.consultspringboard.com for more information.

Voiceover: And now back to our show.

Nadine Vogel: Hello to our listeners, this is Nadine Vogel I am joined by Norma Stanley we are the Co-hosts of Disabled Lives Matter and if you've been listening so far to our interview with DJ Hear No Evil, you know Disabled Lives do Matter and why so Norma I’m going to turn it back over to you.

Norma: Well yeah I mean there's just so many questions I actually want to ask but, you know.

Norma: In history, I understand there are some people in history that you really admire that you would like to you know share with people as to why you admire those people can you share a couple people in history that you admire and why that is.

DJ Hear No Evil: Oh the few people I look up to is.

DJ Hear No Evil: DJ Scratch.

DJ Hear No Evil: And my, my mother, my father, he was in the music game.

DJ Hear No Evil: All those people inspired me to work harder.

DJ Hear No Evil: I can’t give up.

DJ Hear No Evil: So because what I am really trying to say is that I cannot make any excuses.

Right.

DJ Hear No Evil: If it’s there, I can get there, I just have to overcome my obstacles.

DJ Hear No Evil: So that’s how they motivated me and when I stay motivated for myself to get to where I need to be at.

DJ Hear No Evil: I’m talking about my life, my health, my mindset.

DJ Hear No Evil: The whole, everything.

Norma: Right and.

Norma: As your you know progressing in your your career and making such great name and reputation for yourself how are you being received from the community in general, I see you have a really big social media following How do people receive your work obviously you.

Norma: love it, but I would like to know what you think.

Norma: How do they respond to you when you do your gigs.

DJ Hear No Evil: So what I do is, I started with social media, I keep postings of my work.

DJ Hear No Evil: Not my work, but to make people aware of

DJ Hear No Evil: deaf history, and I use sign-language.

DJ Hear No Evil: and motivate everybody.

DJ Hear No Evil: by talking about the kids and.

DJ Hear No Evil: looking through their eyes and adding a hashtag, got my fraternity brothers, because they are all over the country.

DJ Hear No Evil: And all over the world.

DJ Hear No Evil: Not just the United States I’m talking about, all over.

DJ Hear No Evil:: And in the deaf world too so that's how I got a lot of people come to check my work. Not just myself, I have them look at other deaf composers, so I get their name out there as well.

DJ Hear No Evil: You know, so they'll make it and I’m not trying to be selfish, but at the same time, I have to show my work too.

DJ Hear No Evil: Cause I'm trying I'm trying to make it too.

Norma: That’s right, that’s right. I’m not mad at’cha. That’s what you gotta do.

Nadine Vogel: You know.

Nadine Vogel: You know it's interesting a comment you made early on keeps kind of swirling in my head a little bit, which is about you know, using your hands to express.

Nadine Vogel: And I keep coming back to this concept, because obviously for someone who is deaf you do use your hands to express, but I don't think that people equate it and realize that for a DJ.

Nadine Vogel: Right if not for your hands, how will you, you know express this and I just this takes me to a whole other discussion about you know, have you ever.

Nadine Vogel: Oh, my gosh I don't even want to say taught a class published a book or wrote an article I don't know I just feel like there's something here.

Nadine Vogel: To a teachable moment for people to really understand the concept of expression and expressing with your hands beyond just what people will think of in terms of sign language so I'm sorry to derail a little bit Norma but it's like it just.

Nadine Vogel: Keeps coming back to me, as this is really important.

Norma: I agree.

DJ Hear No Evil: Yeah, yeah I definitely I definitely agree with that because everybody has a different way to show and express their story. And not just to move their hands.

DJ Hear No Evil: There is one female who is blind. She’s from Mount Vernon too, but she’s blind. So she can tell her story.

DJ Hear No Evil: You know, a basketball player I think he didn’t graduate from high school yet , but he is hearing, but he’s playing with one arm.

DJ Hear No Evil: I can’t remember his exact name, but.

DJ Hear No Evil: He got it he got it, excited because everyone got it.

DJ Hear No Evil: So he plays with one arm and that’s amazing.

DJ Hear No Evil: You know what I mean, so everybody has a different kind of niche.

DJ Hear No Evil: That can show their talents.

DJ Hear No Evil: There’s no excuses for not doing.

DJ Hear No Evil:: Oh, I can’t do it, but no, we have the ability to do it.

Nadine Vogel: Right, right. Absolutely I just said that's that's just so interesting Norma you know I feel like it's something we need to explore even further.

Nadine Vogel: Another time but I, this is an important concept.

Norma: Absolutely, the DJ industry, the DJ-ing industry is huge, I mean Beyonce sister Solange is a DJ was a DJ. Khalid there so many really, really.

Norma: Big name, DJs out there, that I didn't even realize there was so many and they do all these international type of gigs is that something that you aspire to be a part of that group.

DJ Hear No Evil: Oh yeah.

DJ Hear No Evil: every night.

DJ Hear No Evil: I mean, that’s one of my biggest goals. you know I mean my goal is to be one of the top DJ producer

DJ Hear No Evil: In the world. So like, it will be amazing for me to do it working up to get there, I mean, even though I’m well known, but at my status, I am still working to get there, but I have to find a way to get to where I need to be at. Right now, it’s all about who you know nowadays

DJ Hear No Evil: I when I say about who you know it’s about connecting, networking like you have to go out to talk to people and then meeting people letting them know about who you are and you never know who might get back to you.

DJ Hear No Evil: It could be one out of one million people walking to you and then they’re calling you, hey youneed to come to the big event.

DJ Hear No Evil: Oh, that would be amazing. Then going over there, and it starts there, and then you work your way up.

Nadine Vogel: So when you.

Nadine Vogel: So when you perform at the Grammy awards Okay, you know, Norma, you and I can say.

Nadine Vogel: Hey the Disabled Lives Matter podcast to the Grammys.

Nadine Vogel: Ha, ha, ha. One-stop shop.

Norma: Absolutely, absolutely. That is so cool. Now you teach you teach sign language and have done that around the world really in different countries and in different places in the US to teach with the American sign language workshop and how does that work and do you still do it.

DJ Hear No Evil: So I’m not

DJ Hear No Evil: teaching A-S-L.

DJ Hear No Evil: Yet. In the future I wouldn’t mind.

DJ Hear No Evil: What I do is I do motivational speaking so I talk to people about my life.

DJ Hear No Evil: I was teaching, but I was teaching about deaf history, so that is the difference.

DJ Hear No Evil: So I’m teaching them more about finger spinning, how to use a turntable along with sign-language, all of that. So that’s the difference.

DJ Hear No Evil: But would I like to teach people to learn A-S-L, absolutely. It would be nice to communicate with people in A-S-L so we can, so the reason I would want to teach them is so that we can combine into one world instead of separate worlds. Deaf World, Hearing world, no. The need to be into one world. That’s how we are going to improve our communications.

DJ Hear No Evil: So yeah I wouldn't mind a few people who want to know more about American Sign Language.

Nadine Vogel: So you know Norma, I'm thinking we should introduce him to the folks at Sign1News.

Norma: Absolutely, absolutely.

Nadine Vogel: They can do a story on him.

Norma: Absolutely, I will make sure that Karen knows about you and um.

Norma: I am thinking that would be something that can.

Norma: Definitely happen. Absolutely.

Nadine Vogel: Are you familiar I don't know if you're familiar with Sign1News, but it's a news station and front of camera behind camera everyone is deaf and it's all you know, like CNN type news and and they have amazing stories and you should be on there.

Nadine Vogel: We’re going to help you get to the Grammys.

DJ Hear No Evil: I mean, I don’t mind, I’m down for that. You know what I mean, I'm open minded like that, you know making an impact, you know.

Nadine Vogel: So I'm curious if, if, two things I have one question first, which is, if you could have a, if you could meet your younger self today if you got introduced to your 10 year old self.

Nadine Vogel: What would you tell him.

DJ Hear No Evil: wow.

DJ Hear No Evil: that’s a good question.

DJ Hear No Evil: I mean a very good question.

DJ Hear No Evil: I mean, if I meet my 10 year old myself, I’m I can’t tell myself everything because that would mess up the future. But what I can tell is that he needs to stay focused.

DJ Hear No Evil: Focused and work hard.

DJ Hear No Evil: Don’t get distracted.

DJ Hear No Evil: because when you get distracted you lose the passion.

DJ Hear No Evil: You’ll lose the focus for wherever we need to be at. I mean because I was a kid, I could have gotten into the bad things I mean I almost did I mean good thing is my grandfather talked to me and stopped me and said okay focus you know what I mean.

DJ Hear No Evil: So too will tell myself work hard.

DJ Hear No Evil: Stay focused. You know.

DJ Hear No Evil: Meet with the right people.

DJ Hear No Evil: Because getting mixed up with the wrong crowd will mess up your life and mess up your mindset. And everything that you dream about.

DJ Hear No Evil: That’s something I would tell my 10 year old self. Just like that.

Nadine Vogel: And I, and I guess your advice would be probably similar for an up and coming a younger DJ that you know someone that aspires to be you and to do what you're doing I presumed then the advice would be pretty much the same.

DJ Hear No Evil: Yeah, yeah, yeah most definitely. Most definitely. I mean.

DJ Hear No Evil: It’s amazing because my life is very interesting, you know, even though after I graduate from college my life is interesting as a whole.

DJ Hear No Evil: So I’m able to do this, and I’m able to do that. Oh wow, so I thought about

DJ Hear No Evil: learning new experiences.

DJ Hear No Evil: And how you get better from that.

Norma: Absolutely. So what did you major in in college What was your major.

DJ Hear No Evil: I graduated with a media-marketing and accounting I have two majors, I graduated with bachelor degrees, I have master certifications

DJ Hear No Evil: So I have a bachelors and masters.

DJ Hear No Evil: yeah. Yeah.

Nadine Vogel: That's an interesting combination marketing and accounting.

Nadine Vogel: Usually the people in marketing was nothing to do with the numbers.

Nadine Vogel: And the people doing the numbers want nothing to do with marketing.

Norma: Exactly. That’s interesting. I, I am one of those people who want nothing to do with the numbers.

Nadine Vogel: Right, right, me too, I know.

Nadine Vogel: But you know I it's an interesting combination, because, in part, that really helps you beyond beyond DJ running the business of DJ-ing.

Nadine Vogel: That really gives you some great background to be able to do that as well.

Nadine Vogel: Right. Yeah because.

DJ Hear No Evil: I would definitely like to be a hip hop mogul like Jay-z or Diddy, or Russell Simons,.

DJ Hear No Evil: So I can bring my deaf community out there.

DJ Hear No Evil: And help them to explain how to do it right. And then they can go ahead and do their own thing.

DJ Hear No Evil: While I’m pursuing my own thing as well.

Nadine Vogel: Right, right.

Nadine Vogel: Awesome, awesome, very cool.

Nadine Vogel: Wow Norma, This is like amazing.

Norma: Yeah I really enjoyed learning more about you DJ. What part of Brooklyn are you in. Or do you still live in Brooklyn.

DJ Hear No Evil: I live in Mount Vernon, New Rochelle.

DJ Hear No Evil: But I travel a lot.

DJ Hear No Evil: I tend to go D.C., Washington D.C, and then Atlanta.

DJ Hear No Evil: Texas, Florida, I travel a lot. Depends what kind of event I’m doing.

DJ Hear No Evil: BecauseI’m unable to say no that’s too much because I’d rather stay outside the comfort zone.

DJ Hear No Evil: You gotta be comfortable with being uncomfortable.

Norma: that's right.

DJ Hear No Evil: So I’d rather strive a lot, and go outside.

DJ Hear No Evil: get some experience also expanding my brand.

DJ Hear No Evil: I just got back from Jamaica. Two months, what’s today, this is.

DJ Hear No Evil: March.

DJ Hear No Evil: I got back from Jamaica about. Four or five months ago.

Nadine Vogel: Ah.

DJ Hear No Evil: So I was DJ-ing in Jamaica, it was a nice experience.

Norma: Nice.

DJ Hear No Evil: So I DJ’ed there, I wouldn’t mind to DJ in.

DJ Hear No Evil: Europe.

DJ Hear No Evil: That’s where the big money comes in.

Norma: Yeah.

Nadine Vogel: Well okay. We’re going to have to keep talking because you know my company works with you know companies around disability and we have events in different parts of the world, and when we get finally get rid of Covid, hopefully, and we can go back to our in person events we just may be reaching out to you.

DJ Hear No Evil: So you have my email. Instagram or whatever.

DJ Hear No Evil: So you can reach out to me.

Nadine Vogel: Well, you know what let's let's do it let's close on that note, if someone is listening to this and it looking to book an amazing DJ how do they get in touch with you.

DJ Hear No Evil: So.

DJ Hear No Evil: If you want to reach out to me to DJ or as a motivational speaker, you can reach out to me on my Instagram or by email. So my Instagram is @djhearnoevil one more time, @djhearnoevil

DJ Hear No Evil: And my email is bookingdjhne@gmail.com.

Nadine Vogel: Okay.

DJ Hear No Evil: One more time bookingdjhne@gmail.com.

Norma: Okay, great.

Nadine Vogel: For all our listeners you heard it here.

Nadine Vogel: If you need a DJ, this is the guy to call or to email or however you want to get in touch with him. Norma, thank you. Wasn’t this amazing.

Norma: Yeah, thank you so much, I really learned so much about the craft.

Norma: And looking forward to seeing you again very soon.

Nadine Vogel: Absolutely so to our listeners, I know you enjoyed this is much as we did, and we look forward to seeing you and speaking with you on another episode on our next episode.

Nadine Vogel: of Disabled Lives Matter more than a podcast, it is a movement and Norma, thank you so much, so we have Norma Stanley and Nadine Vogel till next time bye everybody.

DJ Hear No Evil: Thank you for having me.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

View Details

Season 02, Episode 10 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Lesley Hennen

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.

Nadine Vogel: Hello Hello everyone, this is Nadine Vogel and joining me as my fabulous co host Norma Stanley.

Norma: Hello.

Nadine Vogel: We are here for another wonderful episode of disabled lives matter and they really do, by the way.

Nadine Vogel: And this is more than just a podcast this is, this is a movement and so we're so excited for all of you to join us to help us continue and grow that movement and especially so because we have a wonderful guest with us today that Norma I'm gonna let you introduce.

Norma: Well let's Lesley Hennen is an amazing young lady she is a writer, director, filmmaker, and you know she has done some amazing work in.

Norma: The field of entertainment, of course, and we are really excited to have you on the show you also.

Norma: do some work with entertainment and making sure people disabilities get the opportunities that they deserve do some work with RespectAbility I just want to thank you for taking time out to be a part of disabled lives matter today.

Lesley Hennen: yeah Thank you so much for having me i'm excited to chat.

Norma: Well, we are really interested in learning about the work that you do when it comes to entertainment and i'm what our.

Norma: First of all, what drove you to want to do the kind of work that you do someone who is an advocate and proponent of making sure people with disabilities get opportunities in the entertainment space.

Lesley Hennen: yeah so I mean I, like every kid in the 90s early 2000s grew up with TV I love TV.

Lesley Hennen: But I was born with a disability, I was born with club feet, and so I were like braces I used to use a walker i've also used a wheelchair.

Lesley Hennen: When I was very young, but I never really saw that represented on screen anywhere on TV.

Lesley Hennen: And anytime there was a disabled character, they were either you know, it was very like tragic or or there was, like the complete opposite where the character was like so positive had no problems and they were this like inspirational.

Lesley Hennen: You know, trying to inspire all of the non disabled characters around them and I watching that was like I'm neither of these things you know I just.

Lesley Hennen: I'm in between, and so I started writing you know just trying to write my own stories and write my experiences that were authentic to me, and what I you know experienced growing up and.

Lesley Hennen: As an adult as well, and so that was kind of how I got into writing and TV writing and then, as I learned more about the industry.

Lesley Hennen: And I realized like if I want to tell these stories and tell them the way I want to tell them like the industry has to change, as well, so that was.

Lesley Hennen: I actually found RespectAbility in 2020 when I went through our summer lab program as a writer, so we have a program that is for.

Lesley Hennen: Anyone with a disability that's working behind the camera and the entertainment industry so writers, directors, producers.

Lesley Hennen: everything that happens behind the camera so I went through that as a writer and just learned a lot more about.

Lesley Hennen: You know how the industry works and ways to advocate for myself as a disabled person and advocate for others and to sort of help that.

Lesley Hennen: Industry change, and so, then I started working on staff with RespectAbility.

Lesley Hennen: About a year ago, actually so yeah it's been really great kind of a full circle moment to kind of you know both do my own writing and then also help kind of advocate for the change for everyone so it'll be an industry that I want to work in.

Norma: awesome awesome well do you have any questions I have another one.

Lesley Hennen: Go fo it.

Norma: Well, I mean so I'm starting to see more representation of people with disabilities on television and films and things like that.

Norma: What do you think they are missing, because it's still not really represented, I mean it's still very few people who are a part of these opportunities, what is it that you would like to see more of.

Lesley Hennen: yeah I mean i'd love to see just more representation, overall I think that's, the main thing is like.

Lesley Hennen: There has been such a few representation so far that you know it feels.

Lesley Hennen: Like there's always still just feels like there's much missing like you said, so I think we really just need more of the nuance like more.

Lesley Hennen: Of like really specific stories because there's no disabled person is the same so that's what I really advocate for in my writing is telling like.

Lesley Hennen: Very specific stories, a lot of intersectionality like disability is an identity that can cut across all other underrepresented identities, as well, so intersectionality is super important to me.

Lesley Hennen: Also authentic casting like we really need there's so many disabled actors out there that are so super talented but, again, are like only considered for disabled roles, or you know, but we really need to start considering.

Lesley Hennen: actors for other roles as well, and just really also just more casual inclusion, I guess, it would be like you know there's no we don't need to know why the character is disabled like you're.

Lesley Hennen: Like a main character can have a disability, but it doesn't need to be the focus of the story, it can, but it doesn't have to be so, I think you know that's what i'd love to see is just more like casual inclusion.

Nadine Vogel: So I have a question about that So where does that start right, how do we get that, how do we get that to happen, because I can tell you, at least for Norma and I we've been it's been a long time.

Lesley Hennen: yeah I mean great question, I think it starts with just talking to the studios that's what a lot of what we do RespectAbility is like.

Lesley Hennen: Encouraging authentic and I don't think authentic casting but hiring disabled writers in the room, hiring disabled directors and disabled.

Lesley Hennen: Post production folks as well, so just really hiring more disabled people at all parts of the process and then also just hiring more.

Lesley Hennen: High Level disabled folks as well, so like disabled show runners who are really like changing things from the top down like I think that's really how it needs to happen.

Nadine Vogel: yeah.

Norma: Yeah. that's true and my brother was um was in the movie industry, many years ago and he's no longer with us, but he got a chance to be part of movies, like.

Norma: terminator and Star Wars and the distribution side, not in the film and the production side, but you know back then.

Norma: It wasn't even thought of, you know, to incorporate people with disabilities in any of the.

Norma: Aspects of filmmaking and television production and those kinds of things so i'm glad to see it happening, but you know the like you say it's just not enough.

Norma: Like you say, it should also be regular roles that people with disabilities get the opportunity to audition and get and that's happening enough

Lesley Hennen: yeah.

Nadine Vogel: You know Lesley you also said something about intersectionality so at springboard we have a whole global practice around intersectionality with disability and that's a that's a really big deal for me because none of us are one thing.

Lesley Hennen: Right.

Nadine Vogel: But, for some reason, when it comes to disability people like to make that so one thing right like you can't be you know LGBTQ and disabled or black and disabled whatever it may be um I wonder if you have any thoughts on that.

Lesley Hennen: I know yeah I mean, I see that a lot too I don't know what it is why people are constantly you know, putting disability and its own separate box or just a lot of times it's not even.

Lesley Hennen: People will list other identities and not list disability, even though, like there will be disabled people in those groups that are listed it's like it's for some reasons it's never called out.

Lesley Hennen: I don't know what it is, I guess the stigma I guess is just around disability there's such a.

Lesley Hennen: systemic stigma that goes back to you know people not wanting to identify as being disabled or you know people are very afraid to say the word disability so that's another thing that.

Lesley Hennen: I like to advocate for and RespectAbility advocates for as well, as you know, disability is not a bad word.

Lesley Hennen: it's the you know the societal stigma about disability, that is bad so trying to say the word as often as possible and just you know get rid of that stigma, because it is a very.

Lesley Hennen: I find it a very empowering word, you know there's the Americans with Disabilities Act so it's not the differently abled Americans actually it's a disability so that's.

Lesley Hennen: I think it's just getting over that stigma and just saying the word disabled and disability and just trying to get it into the into the norm.

Nadine Vogel: Now i'm glad you said that.

Nadine Vogel: So norma and I have had these conversations you know in in corporate where were we work.

Nadine Vogel: differently abled is is you know the the term of choice, and you know I always say even if you look at parents and you know Norma and I are both.

Nadine Vogel: moms have adult daughters with disabilities, you know the term special needs right like no one likes that, but that is actually the lingo legal terminology within the school systems.

Nadine Vogel: And so I always say you know even parents that use the term special needs don't like differently abled like what does that mean aren't we all differently abled in some way.

Nadine Vogel: But I think it goes back to something, you said that there's a lack of comfort right with the word, so I always say say it loud say it proud, you have a capital D, you know.

Lesley Hennen: Yeah. Exactly.

Norma: absolutely.

Norma: And I think that's a conversation that really needs to be had at a larger level because so many people don't really understand that it's not a bad word and and that you know there's not a.

Norma: comfort level that word for some reason, and they feel they have to make it sound different.

Norma: little bit more acceptable.

Norma: And that's something I think that needs to be discussed on a broader level.

Nadine Vogel: yeah absolutely

Lesley Hennen: yeah absolutely.

Nadine Vogel: So i'm just curious, what is your being in entertainment and you know, like you said you know going to the studios and talking about hiring people with disabilities more.

Nadine Vogel: What is your involvement relative to you know, one of the things we hear a corporate as well we don't know where to find these people.

Nadine Vogel: right. they're hidden behind you know corners and rocks.

[laughter.]

Nadine Vogel: What are you all doing you know, in terms of getting with SAG screen actors Guild or the writers Guild to say hello they're here.

Lesley Hennen: yeah great question that yeah that was definitely something we heard a lot was like oh we'd love to hire a disabled writer, we just don't know any. or like a

Lesley Hennen: Disabled director, but we don't there aren't any we don't know any so we.

Lesley Hennen: That was originally why the summer lab was created in 2019 was sort of an answer so where we could just point people to and say like well here, here they are here's.

Lesley Hennen: we've had about 90 people go through the program now and we are gearing up we're going through applications now so there'll be.

Lesley Hennen: Two labs this summer actually so we'll have about 60 more folks going through the lab, which is very exciting but yeah so we're really just focusing on the pipelining programs, and not only just like.

Lesley Hennen: it's very much a two part thing where we're you know, creating a pipeline for disabled creatives but then also working with the people that are in hiring positions to make sure that.

Lesley Hennen: The disabled creatives that we're placing in jobs are going into an environment that is accessible to them and is going to be like a successful.

Lesley Hennen: positive environment for them and to help them get promoted, so I think that's a big part of what we do is because you know a lot of.

Lesley Hennen: oftentimes like the pipeline programs, you know they'll get even just like regular like industry.

Lesley Hennen: writers programs, a lot of times you'll get hired you know, on a show for one season, through this pipeline program but then like you don't necessarily get hired back.

Lesley Hennen: So a lot of the the lab is very much just like introducing folks to as many different people and hiring positions as possible all across the industry so every department.

Lesley Hennen: From development to writing to on site production and post and marketing and casting and everything, so I think we're just trying to go at it from as many angles, as possible and so working with both the disabled creatives and the people in hiring positions as well.

Nadine Vogel: yeah and I think I think norma you and I see that in corporate right if companies will hire entry level.

Nadine Vogel: And then the individuals with disabilities, although their performance manager, or is it been fabulous you know 10 years later there's still a entry level.

Nadine Vogel: or one of the things that springboard talks about often is this issue of organizational readiness right so so we bring the person in knowing that we don't have systems in place.

Nadine Vogel: To ensure to your point Lesley that they're going to be successful right we don't have a reasonable accommodations process or we don't whatever it may be right, so that that's also a challenge, and then they say Oh well.

Nadine Vogel: it's like a self fulfilling prophecy they'll say well Lesley see we told you, it wasn't. going to work.

Nadine Vogel: And you're like.[frustrated scream]

Lesley Hennen: I know it's so frustrating.

Nadine Vogel: right yes yeah, I can tell you been there done that.

Nadine Vogel: So we actually have to go on break.

Nadine Vogel: So let's just take a very short break, but for our listeners do not go anywhere, we are going to be back in just a minute with lots more questions and more conversation so stay tuned.

Voiceover: And now it's time for a commercial break.

[COMMERCIAL] Have you attended a springboard Consulting event? Well, you should, we have the best events and our 2022 events are just under way. Firstly is the Brg Summit happening on Tuesday, April 26th, and then following that is Disability Matters. North America Conference and Awards that's happening Wednesday and Thursday, April, 27 and 28. Both events are being delivered by a live stream. If interested in attending, please visit www.consultspringboard.com for more information.

Voiceover: And now back to our show.

Nadine Vogel: Hello everyone and welcome back to today's episode of disabled lives matter and, yes, it really does and i'm going to turn it right back to Norma, because I want to get back to today's wonderful interview with Lesley Hennen, so Norma take it away.

Norma: Okay well Lesley I'm really curious to learn more about your your approach to the writing you you tend to take a comedic point of view, to the types of things that you do, why is that and and how was it working out for you in terms of the projects, you get to do.

Lesley Hennen: yeah great question i've always been a little bit of a comedian like even as a kid I was always kind of like the class clown and I think I don't know if it necessarily was because I was disabled I have heard, I there are studies, I don't know I can't quote them exactly.

Lesley Hennen: There is like.

Lesley Hennen: kids that grow up with disabilities will often sort of develop humor as like a distraction, maybe or something like that, so it is very likely that they will become comedians that I found interesting, and so I was like oh that was me.

Nadine Vogel: Someone just talked about that I think it was on the critics choice awards, I think I just just someone was just saying something about that.

Lesley Hennen: Oh, really.

Lesley Hennen: yeah I I found that very interesting was like yeah that makes a lot of sense but yes i've always been a little bit of a comedian but I I just find there's something you can say.

Lesley Hennen: Some things you can say with comedy that you.

Lesley Hennen: can't really say with other like for me it's like pointing out kind of the ridiculousness of like living as a disabled person in an inaccessible world like there are some things like you can only point out with comedy like I don't know how to quite describe that but.

Lesley Hennen: Just like calling out how ridiculous these like the things are that we live in, like.

Lesley Hennen: And like for there's one series that I I pitched and I want to like a pitching contest with and it's very much based on like.

Lesley Hennen: Larry david's curb your enthusiasm like that type of humor where it's like the it was if Larry David was me basically it was.

Lesley Hennen: Like a.

Lesley Hennen: Disabled woman with a disability that's like it's physical but it's not visible all the time, depending on what i'm wearing they were leg braces so.

Lesley Hennen: that's gotten me into some like interesting situations on like public transportation where if i'm sitting in the accessible seats and someone will ask me to move, and I have to say, like no.

Lesley Hennen: i'm disabled like I can sit here then just sort of like blowing up those moments into more of a comedic take on things that sort of like the humor I enjoy, I find it funny because it also kind of points out, like the ridiculousness of some of the the the. rules we have in our society.

Nadine Vogel: Oh no you're right, you know I can remember when my daughter was young, and we were taking her out of the car with an oxygen tank with suction machines all kinds of stuff and we'd be parking and accessible parking we get yelled at.

Lesley Hennen: yeah.

Nadine Vogel: Right. I was like really.

Lesley Hennen: All you can do is laugh.

Nadine Vogel: What part of all this paraphernalia do you not see. you know.

Nadine Vogel: I love that you're doing that I think it's great.

Norma: You know it's pretty much in the way the comedians like Richard Pryor and some of the other comedians they have to make light of discrimination and what black people have dealt with.

Norma: it's, the only way they know how to deal with it and also it helps people to understand and be educated as to what people are individuals themselves are experiencing so it's an important aspect of it did you happen to know josh blue.

Lesley Hennen: I have heard of him, but I don't know him yeah.

Norma: Okay yeah he's. we're trying to get him on the show too.

Norma: he's a comedian also he has cerebral palsy.

Lesley Hennen: yeah Oh yes, I think. I've seen him.

Norma: Yes, yes.

Norma: Yes, yes, so that's what he does, and he does a great job he's hilarious you know so.

Norma: don't even pay attention to the fact that he has a disability, just so funny yeah.

Lesley Hennen: yeah I think that's what you said to is it kind of forces people to think about things they hadn't thought about before, and that was another I was in like a writing class a satire writing class a few many years ago.

Lesley Hennen: And I wrote, something that was like based on some of those BuzzFeed articles that you see, like all so something all 90s kids will understand, and so I wrote something about like.

Lesley Hennen: Like toys that people like disabled kids probably couldn't use like things, but like I couldn't like we're not accessible to me.

Lesley Hennen: And I remember like bringing that into the Class three workshops and basically everyone was like wow I never thought of that before and so that was when I was like oh I.

Lesley Hennen: This is what I need to do that was like kind of a big.

Lesley Hennen: Aha moment for me.

Norma: Or that must have been pretty interesting what kind of toys with those.

Lesley Hennen: I mean I just thought of thing.

Lesley Hennen: Like.

Lesley Hennen: Do you remember, like skip it you'd like put it on your.

Lesley Hennen: ankle and do like they like didn't fit over my leg braces so I couldn't use that or there was like a roller skates just like putting on roller skates was like not a thing I could do, and like just different.

Lesley Hennen: I don't just things that like weren't necessarily accessible to someone with like mobility assistive devices.

Lesley Hennen: That are on all of these lists, like every 90s kid will relate to, and I like not me.

Nadine Vogel: I should put you in touch with my daughter, she would totally relate.

Norma: I mean just getting down to creating parks that are accessible and it's still not that many of them with our kids.

Norma: can't get on slides and play in some of those things that the typical kids can play with you know you can have to go up this things with my daughter put her on the slide and kind of come down with her.

Lesley Hennen: yeah.

Nadine Vogel: I did that.

Norma: yeah.

Norma: Exactly. As soon as she got to be for the swing so many different things, and they're just now getting around to it and it's very few cities have parks that are accessible.

Lesley Hennen: yeah. yeah. true. ugh.

Nadine Vogel: More work to be done, ladies.

Norma: So. much work.

Lesley Hennan: Always.

Norma: So much work to be done.

Norma: So who are some of your role models and some things we made some inroads in the disability space and entertainment space that you would like to see know if you ask to work with them or just like them.

Lesley Hennen: yeah I mean I love Ryan O'Connell and special on Netflix that that was the first time I really saw a character that I was like oh this feels real like this feels.

Lesley Hennen: Like authentic and like he's a little bit of an anti hero like that's the kind of character, I love where it's like a.

Lesley Hennen: disabled person making messy choices, because I feel like that's very real and like disability is messy it's not it's not you know, on opposite ends of the spectrum that we've seen you know, the only tragic or only happy and positive.

Lesley Hennen: But yeah so love Ryan O'Connell.

Lesley Hennen: I love the show sex lives of call of college girls and lolo Spencer her character on the show is so good.

Lesley Hennen: i'm hoping, they will that we see more of her in season two so she had some really great comedic lines that I feel like they could do an entire episode around so excited to see those.

Lesley Hennen: Who else.

Lesley Hennen: I don't know it's just very anyone that's out there, like telling their own story that I think that's really exciting for me to see because that's like what i'm hoping to do as well, and I think the more people we get that are just out there, telling our own stories, the more.

Lesley Hennen: More people can see that they can do that too, and then we're just going to get more and more.

Nadine Vogel: So, like you said earlier Lesley it's about authenticity.

Lesley Hennen: yeah. exactly.

Nadine Vogel: being our authentic selves and being comfortable with that, even if others at the moment are not.

Lesley Hennen: yeah. exactly.

Norma: yeah exactly that is so important, so what does 2022 look like, for you as you move forward, you won some awards for your work things you have in store for the world as we move forward.

Lesley Hennen: Ooh well, so I wrote a narrative podcast script with some friends and we recently found out that we won a production grant for it, so we are going to produce that podcast it's like a mystery comedy.

Lesley Hennen: about some high schoolers that discover a murder that was covered up by their town and so very exciting about like thinking about how we might be able to cast that because voice acting is much more accessible to disabled actors so.

Lesley Hennen: Definitely hoping to cast some disabled actors in that as well, and just get some people on board behind the scenes as well.

Lesley Hennen: But so that should be coming out later this year at some point, and then yeah just working on a few different pilot scripts that I've been pitching around and would love to make.

Lesley Hennen: Like some short films or trying to get more into tik tok I love watching tik tok, but maybe maybe some more like a tik tok series.

Lesley Hennen: A lot of really great disability content.

Lesley Hennen: On. tik tok, which is great.

Norma: I'm so bad about some of those things but. now I'm going to have to start watching tik tok, I don't understand tik tok most of the time.

Nadine Vogel: That's okay, the first time I heard tik tok I thought someone was referring to tic tac toe.

[Everyone laughing.]

Nadine Vogel: I probably shouldn't say that on the podcast, but it is, it is true, but you know it's interesting what you said Lesley about about that on tik tok because I think it's it's this freedom.

Norma: Yes.

Nadine Vogel: To be your authentic selves whether it's from a diversity standpoint intersectionality whatever it is it's just free to be your authentic selves and I, I think you would be interesting and I'll put this out because you have nothing else to do so I'm going to put.

Nadine Vogel: This out. to.

Nadine Vogel: You know how do you scour a tik tok right to find some of these individuals that the studios if they really paid attention to like wow we you know we like I don't know how you do that because, like Norma I'm not really on tik tok very much.

Nadine Vogel: It's on my to do list, but how do you do that, I mean I mean, do you think that would be, I don't even know if that would be helpful I'm just thinking that might be a way to really recognize who's out there.

Lesley Hennen: yeah no that's a great I mean I think there's also a tik tok has an algorithm too so like when you watch it knows the things that you are watching and it will just show you more of those things so.

Lesley Hennen: If people, it also uses hashtag so I know there's like the disability hashtags people can look those up and then you'll see all of the top creators that are creating content about disability and.

Lesley Hennen: Then, in theory, with the algorithm if you keep watching more and more of that it'll just show you more and more.

Lesley Hennen: So yeah if we can get.

Lesley Hennen: The studio's to do that, that would be great.

Nadine Vogel: We have to basically take over their phones.

Nadine Vogel: Okay, so yeah so some covert operations.

Norma: Yes, interesting. and that's just the thing well to get people to care enough to even want to check things like that out.

Norma: um you know that's something that was a Bank of America just recently came out with a study that said something to the effect that when it comes to DEI and.

Norma: There was some percentage of the disability Community that's unemployed and stuff that we already know, but somehow i'm so glad they included.

Norma: The disability community in the study in the first place, basically it came down to that companies are losing trillions because they're not doing enough.

Lesley Hennen: yeah.

Norma: But. We already knew that what are they prepared to actually get done

Lesley Hennen: right.

Nadine Vogel: right.

Lesley Hennen: yeah that is that's a number.

Lesley Hennen: I think it was with Nielsen that the disability market is valued at $1 trillion.

Norma: um hmm.

Lesley Hennen: So. You know that includes disabled people, their family members or friends or everybody.

Lesley Hennen: Because, if you if something it's not accessible to us like you know.

Lesley Hennen: Our friends are not going to go like.

Lesley Hennen: We can't go yeah so it's like just losing. you're leaving money on the table.

Nadine Vogel: yeah absolutely I you know, and I was hoping that Covid in some respects, would have a really positive impact.

Nadine Vogel: on individuals with disabilities, especially around employment i'm realizing that you know some some folks who who had significant disabilities.

Nadine Vogel: Who over the years have asked to work from home or from home part time and we're told that we can't do that.

Nadine Vogel: You know, there were more poised than anyone else to do that, my concern is you know, sometimes I think there's a short memory.

Nadine Vogel: And as we go back to our workplaces I'm just hoping that companies organizations don't forget.

Nadine Vogel: Right, the power that people with disabilities really bring in, and I think you know even even from an entertainment in some respects, especially from an entertainment standpoint.

Nadine Vogel: So I guess if there is, you know if there was one thing, maybe there's more than one Lesley that you would like to get across to our listeners.

Nadine Vogel: You know what is it and and our listeners, you know our people with disabilities people caring people with disabilities, people without disabilities, like everybody right.

Nadine Vogel: What does is it if you could get one or two real messages to them about what they could do something we could actually do as a result of this conversation today what would that be.

Lesley Hennen: I feel like really the heart of everything for me is like disabilities, not a bad word so just.

Lesley Hennen: say the word more.

Nadine Vogel: okay.

Lesley Hennen: Because that's just going to make everyone more comfortable with the word and then that's going to help everyone, I feel like essentially that's sort of at the root of a lot of.

Lesley Hennen: The things that disabled people have experienced for so long is like this stigma and so getting rid of that you know definitely will help, and I think really hiring people as well it's like.

Lesley Hennen: Thinking about accessibility is really for everyone, you know people oftentimes think of accessibility, like oh it's going to be more expensive it's going to cost.

Lesley Hennen: so much money and it's really just ask people like if you're in a hiring position and just you just ask someone like what do you need to do to do your job, like what do you need.

Lesley Hennen: And that you know it doesn't force someone to disclose if they don't want to they can just simply ask for something they need to do their job and that is something that can apply to anyone that is working.

Lesley Hennen: So I think yeah just thinking of things more big picture, not trying to separate out disability and accessibility from other things.

Nadine Vogel: So, so you know, thinking of people with disabilities as people first.

Lesley Hennen: yeah. exactly.

Nadine Vogel: Right. people first and and that if they do have a disability to understand that disabilities do matter.

Lesley Hennen: yeah right.

Nadine Vogel: they matter in that how we to your point, how we accommodate.

Nadine Vogel: But they also matter, I think, because for some people, the disabilities would they like to refer to with their superpower right and it gives them skill sets and abilities or insight that perhaps others haven't had.

Nadine Vogel: so well, this is great I norma anything else you want to ask I think we're running out of time I can't even believe it.

Norma: Any any way to reach you if anybody had any other questions or any things like that, how could they get in touch with you.

Lesley Hennen: Instagram and Twitter.

Lesley Hennen: Leslie hennen l-e-s-l-e-y h-e-n-n-e-n the same on both yeah reach out I'm always on Twitter so that's probably.

Lesley Hennen: the best way to get ahold of me.

Nadine Vogel: Well, thank you so much for taking the time to speak with us and our audience today norma, as always, love doing this with you love creating this movement and growing this movement and Lesley tell everyone that you know about this podcast because it is important, it matters.

Lesley Hennen: Yes, I will, thank you for having me.

Nadine Vogel: Absolutely so to our audience Thank you once again for joining. Norma we'll see you on the next time.

Norma: Thank You guys be blessed see you soon.

Nadine Vogel: Bye bye everybody.

Lesley Hennen: Bye bye.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Season 02, Episode 09 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Donna Davidson

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley.

Nadine Vogel: Hello Hello everyone, welcome to another fabulous episode of disabled lives matter we are more than just a podcast we are a movement in part because of my fabulous co host Norma Stanley.

Norma: Hello everybody how you guys doing today.

Nadine Vogel: Good good very excited norma you and I. I know are both excited about who we're going to be interviewing today.

Nadine Vogel: So Donna Davidson has joined us, and she is President and CEO of Easter seals North Georgia, I believe, one of North Georgia one of Georgia's largest nonprofit organizations so um Donna welcome.

Donna davidson: Welcome Thank you so much for having me happy Monday.

Nadine Vogel: Happy Monday, Tuesday, Wednesday. yeah.

[Everyone laughing.]

Nadine Vogel: Whatever day it is um so tell us you know before we go into Easter seals and some of the work that's done there tell us a little bit about you, I understand you started your career as a speech language pathologist therapist for children.

Donna davidson: I did, I have always had a love for children and I started my career as a speech and language pathologist working with children, I started actually in the public schools.

Donna davidson: And then I was really interested in going into a management position, so I joined Easter seals in the State of Massachusetts in 1987.

Donna davidson: As their director of therapy services, and then I worked into their director of marketing services, and then I was offered the position in North Georgia to come and lead that organization.

Nadine Vogel: got it so you've been with them a while you're you're you're very intimately familiar with the inner workings so we'll have to get into that [laughter].

Donna davidson: Yes. I just celebrated my 30th anniversary with Easter seals North Georgia as the CEO.

Nadine Vogel: wow so I'm curious how many Easter seal chapters are in Georgia and then how many nationally.

Donna davidson: There are five separate Easter seals chapters in Georgia, and we all do, different things, because we really look at the needs within our communities and in the nationally, we have 72 chapters.

Nadine Vogel: Oh, my gosh Okay, and is it is it the same thing that each chapter looks at the Community it serves and says here's the things we should be doing.

Donna davidson: Absolutely, we look at what the needs are within our particular communities and that's where we focus our efforts Easter seals mission is pretty broad we work with.

Donna davidson: Everything from newborns all the way through seniors and everything in between, so we really try to find where our efforts will make the most difference.

Nadine Vogel: And do you i'm just curious, you know as as demographics change as medical technology changes have you found, since you've been with the organization so long have you found that the kinds of programming that you provide has also changed over the years.

Donna davidson: Yes, we have found that you know, with the advent of technology and thank goodness for that.

Donna davidson: Particularly during the pandemic we've been able to add Tele practice services to work with the children that are in our Program.

Donna davidson: We were able to do that when we had to close our early education program so we were able to do that via technology and we were also able to provide all of our therapy services via technology as well.

Donna davidson: What we are finding, however, is that the children that are in our service we're finding.

Donna davidson: You know, we may start with one service and find that there are more and more gaps, so that we have had to start to add more and more services as we go along.

Donna davidson: With the years going by we have more advanced evidence based practices to work with the children that we serve, but the need certainly has not dissipated at all.

Nadine Vogel: got it got it so maybe you could share with our audience what are, and this is probably a really little question for a very big answer, what are all of the programs and services that you guys provide today.

Donna davidson: Well, at Easter seals North Georgia our largest service is our early education and care program, and that is.

Donna davidson: for children from six weeks to five years of age, with or without disabilities 100% of the children enrolled are living at 100% below the poverty level.

Donna davidson: What makes this program a little bit different is that we provide really comprehensive services we make sure the children get their medical their dental care.

Donna davidson: Their disability services their social emotional services and their education services, and on the other hand.

Donna davidson: We work with parents to make sure that they become their child's first and most important teacher an advocate, and we also help them to obtain.

Donna davidson: A higher level of self sufficiency, so we offer everything from G-E-D, job training, parent training, etc.

Donna davidson: Our other large program is our early intervention program and through that program we provide services for children birth to three.

Donna davidson: with disabilities and we provide those services in the counties of Gwinnett, Newton, and Rockdale counties just in those three counties we're working with over 2000 children, young children. with disabilities.

Nadine Vogel: wow.

Donna davidson: We also have a unique program called champions for children and it's the one program that we do throughout the state of Georgia.

Donna davidson: That program is a little bit unique because it's for children up through the ages of 18 who have a really significant disability.

Donna davidson: But they are middle income or upper income but have the needs that would actually you know, perhaps.

Donna davidson: warrant institutional care and they were denied any assistance from the katie Beckett, or the deeming waiver.

Donna davidson: So through that program we're able to provide resources to families up to $3,000 per family to use on whatever it is, they need and for most families it's to either pay for therapy services that aren't covered by insurance.

Donna davidson: Or that they use those that those funds to provide anything with for medicines, adaptive equipment, etc.

Donna davidson: we're really excited because we also provide.

Donna davidson: Early childhood mental health and we've been doing that program for probably about 25 years, and when we started everybody looked at me cross eyed.

Donna davidson: What do you mean you're working with children that are three years old and and have social emotional challenges.

Donna davidson: Well it's real today it's really something that's being discussed on the national levels.

Donna davidson: And we've been doing that, with the children that are enrolled in our early childhood program and hoping as soon as we have an ability.

Donna davidson: To access medicaid billing and private insurance, that will be able to take those services into the county and then our last service is really a very, very unique program it's called a foster grandparent Program.

Donna davidson: And this program is for seniors who are living in poverty and want an opportunity to get back out into the Community.

Donna davidson: So they work in nonprofit nonprofit early childhood centers who have children that are at risk or who have a disability and they work, one on one with them in the classrooms they're paid a very small stipend.

Donna davidson: But it really is wonderful, because children get to have a grandma or grandpa in their.

Donna davidson: In their classroom and it really gives the seniors an opportunity to get back out into the Community, I think our oldest foster grandparent was 89 years old.

Donna davidson: Volunteering with us so we offer an array of services, but, as you can see they're all geared towards working with children and their families.

Nadine Vogel: yeah so so wow.

Nadine Vogel: that's a lot, and so, for me, and so norma, I don't know about you, but, for me, I think the first thing that just surprised me was the first program where you said i'm working with with folks.

Nadine Vogel: Six weeks to five years, but with and without disabilities, I had no idea I always thought Easter seals was you know disability only norma how about you. did you know that.

Norma: I didn't know that, that was a surprise. so why is that.

Donna davidson: Well, Easter seals went into the field of early education, because children with disabilities couldn't find a place to go into early education or childcare.

Donna davidson: A lot of child care centers were very, very scared you know they didn't have the skills to to work with children with disabilities.

Donna davidson: They couldn't provide you know lower ratios and so Easter seals actually in North Georgia we're actually in the state of Georgia, we were the very first inclusive childcare that opened.

Donna davidson: In 1992 we really believe in inclusion and And what better way to start than when children are first born and first diagnosed, so all of our classrooms and we have 19 locations.

Donna davidson: And we work with over 2000 children a day all day long and children with him without disabilities are enrolled in the same classrooms and it's wonderful for all of the children.

Nadine Vogel: wow.

Norma: I know when Sierra was young, you know, and she was born in 88 that was not available to us, and that is still such a major need finding childcare for parents who need to go back to work.

Norma: And so, that is something that is really important to parents, because you know you have to be comfortable with whom, you're leaving your baby with, when you have to go back to work, and that's such a big need should be bigger.

Norma: You know, they need more centers.

Donna davidson: It should be and it's so wonderful because we have a therapists that work in the program we're really excited right now, because we have quite a number of children who have been diagnosed with autism spectrum disorder.

Donna davidson: And we're working on a new model so that those children can also successfully be included within the classroom so we're working with.

Donna davidson: A-B-A and working on being able to place a registered behavior therapist in the classroom one on one with the children so that they have all their needs, met in one location, which is also fabulous for working parents.

Norma: Absolutely absolutely that's very exciting.

Nadine Vogel: yeah and you know same here you know Gretchen my older daughter was born in 91 and now she needed RN care so and she had RNs until she was 13 so we took it to a whole nother level right, we had the RNs in the classroom was with her, etc.

Nadine Vogel: So that was that was pretty wild, but I think that that's that's amazing that you do that, and the other end I love the whole foster grandparent thing I. think that it's.

Nadine Vogel: Really cool again something I wouldn't have.

Nadine Vogel: imagined you guys doing but I totally get the connectivity and back to special needs kids, so I think that's fabulous.

Nadine Vogel: So I want to touch on the early childhood mental health, we need to go to a break in just a minute, when we come back I would love to just talk a little bit more about that because.

Nadine Vogel: You know I will tell you when when my older daughter was younger because of all the therapies and all the things she was getting we brought her to see a child psychologist.

Nadine Vogel: I think she was about three or four probably about three when we started doing that and to your comment earlier Donna, you know people looked at me like I have four heads they're.

Nadine Vogel: Like no don't, why are you causing a problem that doesn't exist and it's like.

Nadine Vogel: no, no, no i'm trying to help her so She'lll know how to cope and and so forth, so when we come back from break I would love to touch on that because I think that.

Nadine Vogel: that's just something nobody's talking about, even though we are talking more about mental health, these days, certainly we're not talking about it, relative to these very young children.

Nadine Vogel: Who are born with or acquired disabilities so on so for our listeners don't go away, we will be back in just a minute speaking with Donna Davidson and talking about Easter seals North Georgia all right be right back.

Voiceover: And now it's time for a commercial break.

Voiceover: And now back to our show.

Nadine Vogel: Hello Hello everyone, this is nadine vogel and we are back with my co host Norma Stanley, hey norma.

Norma: Hey.

Nadine Vogel: And we are interviewing the lovely Donna Davidson today from Easter seals North Georgia so before we left for break Donna, you were sharing that you have a program it's around early child mental health.

Nadine Vogel: We know today the mental health has been talked about quite a bit, but I think more so, either in the adult community.

Nadine Vogel: or in that tween teen you know and off to college I don't think I could be wrong, I don't think people are really thinking about this in terms of very young children, especially on children with disabilities.

Nadine Vogel: You know norma and I both are moms of adult daughters with disabilities and, and I think we both can attest, you know when our girls were young when mine was young, we took her for therapy.

Nadine Vogel: For to make sure that she knew how to cope and didn't you know have negative feelings about what she was going through, or at least learn how to deal with them so i'm curious what is, how does your program work and what's been the response.

Donna davidson: Well, first of all, you know to your point we didn't even check children for for difficulties with social emotional behavior.

Donna davidson: As I told you earlier, we administer the early intervention program for for three counties and while there was always.

Donna davidson: A service there to provide psychological counseling i'll tell you that's one thing that you know it very infrequently did it ever occur.

Donna davidson: And then we started to notice that particularly children living in high risk situations.

Donna davidson: were exposed to lots of different types of trauma and that also applies to children with disabilities or children with significant medical health.

Donna davidson: issues in and out of the hospital being separated for mom you know with with the earliest infants, we are often begins to show up is in their digestive system.

Donna davidson: A great psychologist friend of mine said when I asked him what I said, you know we've got we were getting all of these children.

Donna davidson: That have some some really difficulties with their you know their gastrointestinal system, and he said, you know what Donna and infants stomach.

Donna davidson: is like their second brain right so that's when it begins to show, so you start to begin to see these these kinds of difficulties.

Donna davidson: when children are really, really young like you know it two or three weeks we really work to involve the parents in the situation as well.

Donna davidson: So we have a number of different treatments, we have parent and child play therapy, we have.

Donna davidson: Child and parent psychotherapy we have a lot of those things, but it begins with a screening and diagnosis, so now every single child that comes into our any of our programs.

Donna davidson: Within the first 45 days we do a social emotional assessment, and then we do an observation on them.

Donna davidson: And that's really important because we begin to see and it's not just the child that may be acting out.

Donna davidson: You know, you also have that child we have children that have selective mutism that don't talk.

Donna davidson: or children that are overly quiet, so we work to try to through play therapy and other methodologies that I spoke about to work to identify what's going on with that child and what's going on at home with that parent.

Donna davidson: and working with them to help to meet the needs of that child, you know relationships during those early years are absolutely key.

Donna davidson: So anything that that you know they're through a separation or through trauma that interrupts that you know, will cause cause difficulty and, unfortunately, in this day and age we have a lot of very young children, both with and without disabilities who are.

Donna davidson: experiencing trauma that they should never be experiencing in their lives, and if you don't have strong social emotional skills, there really isn't much you can do outside of that because it just gets in the way of your learning.

Norma: yeah.

Norma: And how do you address the parent you're talking about the training of the parents, because some of the things that i'm seeing.

Norma: Even today, and you know this, my daughter is in her 30s now, but some of the things that i'm seeing today were things that I saw when she was a little girl.

Norma: And a lot of parents today as many organizations that are out here like yours, some of them are falling through the cracks they don't get the support they need to help their children if they even realize they need to get the support.

Donna davidson: Well, first of all, I will tell you one of the things that i've been sort of really advocating for for for since we started this program.

Donna davidson: And you know a lot of children, particularly children with disabilities need to access our state's medicaid system to get their services, and we were covering social emotional you know mental health challenges for children, but we only started at age four.

Donna davidson: So that was a huge problem, because we were noticing children much younger and you know norma doc's aren't necessarily even picking up disability sometimes.

Norma: That's right.

Donna davidson: You know, if it's a really. quick visit, and you know they're supposed to be doing at certain intervals M-CHAT to diagnose autism, but I was on a call the other day with with.

Donna davidson: representative of physicians group, and they were like What do you mean two and three year olds.

Donna davidson: You know that that are having such what does that look like so first of all, we have a lot of education to do.

Donna davidson: You know what is normal two year old behavior because we know, two year olds are going, you know go through their own things right.

Donna davidson: And then, what are the signs learn to know the signs, the child is having a difficult just a you know, a difficulty and then the other part of it is parents being willing to participate in that you know it's it's hard as a parent to say.

Donna davidson: You know what do you mean my child has some social emotional issues going on, you did did I do something it's hard it's hard to do that.

Donna davidson: And so it's working with the parents to talk about you know what.

Donna davidson: When when children are born, they don't come with with a book right every child is an individual, and so we have to learn about a child's development.

Donna davidson: And we have to learn how to respond to different behaviors when they occur and and i'll tell you during the pandemic with kids being home.

Donna davidson: Right now, in our early childhood program we have 250 children that we are working with that are dealing with some kind of social emotional challenge, so it really is becoming you know.

Donna davidson: increasingly more important that those services are provided.

Nadine Vogel: It isn't it also preventative right in nature, in that you know I know like for our daughter, you know she was having surgery, she was having all of these things.

Nadine Vogel: You know I wanted to make sure that she felt good about that or as she was getting a little older the bullying.

Nadine Vogel: right that that goes on, unfortunately, on kids for kids with disabilities, so I think part of it, too, is preventing what could come down the road by doing some of this early on, but would that.

Nadine Vogel: be appropriate.

Donna davidson: Absolutely, so when we when we look at children in our program and we kind of make this pyramid right.

Donna davidson: And at the very bottom level of the pyramid is the the preventative stage and the educational stage, so if I think that all parents should be able to go through.

Donna davidson: Some training and talking about how to address some issues, particularly parents with disabilities, think about.

Donna davidson: When if you have a child that was born with a disability, how overwhelming it is you know you you're worried about their medical health and their therapy needs, and then you start worrying about what's going to happen when they get older so parents needs support.

Donna davidson: As well as giving that support to their children, so I absolutely think that the ability to have that parent training available for them.

Donna davidson: is so very important because, as issues arise, or as signs start to arise they'll start to be able to notice them and get their child the the the assistance they need.

Nadine Vogel: mm hmm yeah no absolutely so i'm just for for everyone who is listening now you when you talk about disabilities, you talk about all disability types Is that correct.

Donna davidson: Correct yes.

Nadine Vogel: So, because I know you mentioned autism but it's also cerebral palsy and down syndrome and.

Nadine Vogel: It could be someone who's undiagnosed that has.

Donna davidson: We are, yes, we are not a disability specific organization and, if you look within our programs we we have children with.

Donna davidson: Almost every type of disability that you could think of so even in our early education program we have children with feeding tubes.

Donna davidson: You know, we have children with pros prostheses we have children in wheelchairs, we have children with cognitive disabilities, children with down syndrome, whatever the need is.

Donna davidson: We work to try to address that need and what's great about the early education program is that every single child in that Program.

Donna davidson: Regardless of their abilities has their own individual plan, because you know what No two children ever learn at the same pace, so we it so if you if you look at educating children with disabilities, with that lens.

Donna davidson: it's easy easy to include them.

Nadine Vogel: Right right absolutely so um so norma and I are intimately familiar with early intervention and what that means, but for our listeners maybe we have listeners that have you know newborns they haven't even heard the term, can you share with everyone what early intervention means.

Donna davidson: Yes, I can so first of all what's very wonderful is that there is a federal Program.

Donna davidson: that's called I-D-E-A part C that's for children from birth to three years of age, so within every state in the United States there is a system of care for children that are born with a disability.

Donna davidson: In Georgia, we have a program that's called children's first So if you have a child that's born in the hospital and they have.

Donna davidson: A disability.

Donna davidson: at birth, they are automatically with parent permission referred into that system, so, in our case oftentimes you know, once the child's health is you know, is at at a safe place.

Donna davidson: You know we're in that house with that family right away when they come home from the hospital.

Donna davidson: And what What that means is is that we're in there to help identify whatever services that your child may need to keep their development on track.

Donna davidson: So it could be physical therapy, it could be speech therapy, it could be, you know, maybe the child is developing, but, but when you need some service coordination to keep things on track.

Donna davidson: But we send the therapists right into the home within the natural environment and deliver all of those services, all of the evaluations are free of charge.

Donna davidson: And the services are looked at from a sliding scale perspective, so you know, we have, as I said in our program we have over 2000 children.

Donna davidson: That are getting those services and it's so critical because we're there to to partner with the family from very early on to start to address those disabilities in the hopes that.

Donna davidson: By the time that child is ready to enter kindergarten let's say we've provided the services so that they can participate in the least restrictive environment possible.

Nadine Vogel: Right. Now, obviously every state works really every state work Similarly, they all all have New Jersey, has the Department of developmental disabilities everybody has one of those.

Nadine Vogel: But my question to you is for Easter seals, is it the same in every state that no matter what that service is that the services you provide the evaluation Those are all free of charge, you come in the home, that is, that identical in all States.

Donna davidson: Yes, that is, that is part of the federal law law and and the service coordination is provided free of charge, as well.

Nadine Vogel: that's great.

Norma: How do you get your funding.

Donna davidson: Easter seals has federal funding state funding and then we do a lot of fundraising as well.

Nadine Vogel: okay

Norma: awesome.

Nadine Vogel: yeah no absolutely so um if we have a family that that is listening to this and says oh my gosh I need to get in touch.

Nadine Vogel: How do they do that I guess i'm going to ask three ways, and if you have the answer for all three so one would be for North Georgia.

Nadine Vogel: One would be.

Nadine Vogel: Georgia in general or really the third would be like nationally in any state how do they get in touch to just at least communicate with someone like yourself or someone on your team to find out what they can access.

Donna davidson: Well, first of all, if they go through Easterseals.com they'll take it to the national website and then within the national website, you can just put in, where you live.

Nadine Vogel: Oh, okay.

Donna davidson: And then it will automatically let's say you live in one of our counties that would automatically pop up with us, and then you can just every day I get.

Donna davidson: messages and they actually come to me directly, and I respond to them about you know programs and services that are available.

Donna davidson: oftentimes will get requests for services that we perhaps don't provide but I always try to provide them with another resource to get the services that they may you know they they need for their child or the or an adult with disabilities.

Nadine Vogel: got it got it, I mean this is this is so important and I made use of Easter seals. I was living in L-A at the time with my older daughter, and they provided respitality know it's like a respitality weekend kind of thing, and I was so.

Nadine Vogel: So i'm I love Easter seals.

Nadine Vogel: i'm big believer so, you know as we get ready to close out, I mean you know you mentioned about Covid earlier and that you know you were able to provide a lot of things through technology.

Nadine Vogel: As we are God willing, coming out of Covid hopefully not into something else, what would you say that the state of the state is right now for the services you're providing and looking you know moving forward the next 12 to 24 months.

Donna davidson: Well, I think, first of all, with everything that went on, with Covid I think the what's concerning to all of us in the disability field in the early education field is the lack of direct care providers during the pandemic, a lot of direct care providers left the field and so. In order. for us.

Donna davidson: To get back you know to full tilt we're going to really you know I mean we're recruiting every day to look at you know, having high quality.

Donna davidson: folks work with our our children that are in our program so that's, the first thing that that we're battling.

Donna davidson: The second thing that we know that as children are coming back into the program, we know that a lot of children didn't visit their pediatricians.

Donna davidson: During that that time, so our even our referrals to our early intervention program were down the last two years, so what we know is that there's probably a lot of children out there that.

Donna davidson: have been missed norma as you put it, that have slipped through the cracks because they weren't seeing their Doc so they you know they're behind it immunizations they're behind in well baby checks all of that.

Donna davidson: We also know, as I discussed earlier, the need for services directed to social emotional.

Donna davidson: Development is key, and some of its just because the kids didn't have any social social interactions during that time period.

Donna davidson: That you know they were doing a lot of screen time whether it was for school or just watching TV, so what we're finding as children are re entering the program is that they don't know how to play with one another.

Donna davidson: Well, some of our babies never saw another child they were born during the pandemic and they did not see another child during this two year period of time.

Donna davidson: We have kids because of the masks that are having problems with speech and language development because they couldn't see.

Donna davidson: The mouth So those are so Those are some of the the impacts that we're seeing based on that and then in our in our early education Program.

Donna davidson: Normally, for our three and four year olds that's a 10 month program when we have a smaller summer month Program.

Donna davidson: But this year we're going full year because of so much that was lost, and when you look at the first five years are the absolutely most critical in terms of a child's development so we've got to get these kids caught up.

Donna davidson: On services, I think Tele therapy is here to stay, you know we're so excited about it because it helps us with the first problem that I talked about in terms of finding enough direct care providers or therapists being able to do some of that.

Donna davidson: You know utiliz utilizing technology will help help quite a bit.

Nadine Vogel: It helps it just does it, you know there's so much do I think back to when my daughter had all had therapy and thinking about how you know what if she was young, now, and I think Tele therapy is great for some things, but this is so much that you know the therapist has to be hands on.

Donna davidson: Absolutely.

Nadine Vogel: Right. feeling the muscles and moving you know and touching the body and and and things that parents either are not equipped to are just not comfortable to do.

Donna davidson: Absolutely.

Donna davidson: And we found that as well yeah parents were really ready for us to.

Donna davidson: Come back into the home.

Donna davidson: But at least we were able to work with the parent during I mean, can you imagine two years without being able to access any of that therapy.

Nadine Vogel: No, no, I really can't I mean my daughter had 11 hours a week of OTPT speech for years, I cannot imagine going from 11 hours a week to zero.

Donna davidson: Yes.

Nadine Vogel: and where she would have.

Nadine Vogel: been as a result that probably is is definitely disheartening but with that we are out of time, oh my gosh I can't even believe it.

Nadine Vogel: But Donna, I just want to say thank you Thank you so much to you all the work you do and to Easter seals you guys are just so important to all of us as special needs parents, I could tell you.

Nadine Vogel: That.

Norma: Thank you so much.

Donna davidson: yeah Thank you.

Donna davidson: So much for having us.

Nadine Vogel: Absolutely and norma another great episode, thank you for being my special partner, and we will see you all on another episode of disabled lives matter bye bye everybody.

Norma: bye be blessed.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Season 02, Episode 08 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Kyle and Brent Pease

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the Disabled Lives Matter Podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley!

Nadine Vogel: Hello Hello everyone, this is nadine vogel I am joined by my co-host Norma Stanley. hey norma.

Norma: hey everybody.

Nadine Vogel: And we're here today, bringing you another episode of disabled lives matter, so we are more than just a podcast we are a movement.

Nadine Vogel: And joining us today are brothers Brent Pease and Kyle Pease to talk to us about some of the absolutely astonishing.

Nadine Vogel: astonishing physical things they do that in my wildest dreams, I could not imagine doin.g so let's start with kyle let's let's start with you you're I think a four time iron man triathlete. Is that correct.

Kyle Pease: i'm actually a five time iron man triathlete.

Nadine Vogel: I can't even imagine doing one so well congratulations and in total i've heard that you've done like. i don't know is it 70, 80 races.

Kyle Pease: Yeah that's it right there, I say we both lost count of how many we've done.

Nadine Vogel: Wow

Norma: And they do it together, so this is really awesome I got a chance to hear your story at the International disabilities day that Coca Cola had, and I was like.

Norma: These people live, right here in Georgia and I didn't really know that and I need to talk to them.

Nadine Vogel: You never know your neighbors absolutely so kyle you were born with cerebral palsy and use a wheelchair, if I understand correctly.

Kyle Pease: yes. that is correct. I have spastic quadriplegia and I use a motorized wheelchair.

Nadine Vogel: Okay. All right, well let's come back to you that you, you got you into college where was it kennesaw state.

Kyle Pease: yeah yeah. yeah. kennesaw state.

Nadine Vogel: And you majored in what.

Kyle Pease: I majored in sports management.

Nadine Vogel: Huh. Okay. Things are starting to make sense.

Kyle Pease: yeah.

Nadine Vogel: yeah all right well let's go back to you and let's go to Brent your brother so so read for you, my understanding is you don't have any physical disabilities but you've been involved in fitness and training for a long time.

Brent Pease: yeah that's correct.

Brent Pease: No, no physical limitations, except at the end of an iron man.

Nadine Vogel: Okay yeah.

Nadine Vogel: i'd be dead after and iron man, if I did that, and I believe you've done is it 10 or 11 iron mans.

Brent Pease: I guess now it's a 11.

Nadine Vogel: Oh yeah Okay, that is just that's that's that's beyond human.

Nadine Vogel: So talk to us about how the two of you came together to start doing races these ironman races together.

Nadine Vogel: And then you know what what kind of came into your hands and say hey why don't we go ahead and do something together like that.

Brent Pease: Go ahead. Kyle.

Kyle Pease: So Brett is my older brother.

Kyle Pease: by two years. and I also have a twin brother but Brent was always there because he's the big brother.

Kyle Pease: So he always looked out for me and I.

Kyle Pease: When he got out of college he started taking up 5K.

Kyle Pease: And 10Ks, to work his way up to iron man and he did the 10 at louisville and he invited the whole family to attend.

Kyle Pease: And I don't get it all and memorized, but all Brent did that day and all the other athletes and it really reminded me of my life, and what I go through on a daily basis of the highs, the lows.

Kyle Pease: The joy you get at the end of his very long day that day um I asked Brent a lot of questions.

Kyle Pease: And then the last question I asked was can people in wheelchairs do the ironman. So the whole journey started.

Kyle Pease: And I we never looked back since.

Nadine Vogel: And I think wasn't it in 20 2018 that you guys like made history as the first brother duo to compete in the iron man.

Kyle Pease: Yes.

Nadine Vogel: that's that's incredible.

Brent Pease: Well that's That was the ironman World Championships in kona Hawaii so.

Brent Pease: I came in at the tail end of a conversation we're getting started and I heard.

Brent Pease: Somebody talking about being in Florida and.

Brent Pease: Kyle and i've done iron man in Florida, and I just want to state for the record that we much prefer to race in Hawaii than Florida.

Norma: [laughter.]

Nadine Vogel: Okay. I'm not going to take this personally.

[All laughing.]

Norma: Hawaii is beautiful. well we can understand that.

Nadine Vogel: i'll tell you i'd rather race in Hawaii than in Florida too.

Nadine Vogel: So do you're doing this together, but I think that you actually kind of you've gone beyond in racing together you guys have developed and formed the foundation, the kyle pease foundation so tell us a little bit about that, and it we'll come back to more of the specifics of the racing itself.

Nadine Vogel: Who wants to take that one on.

Brent Pease: yeah so um.

Brent Pease: Really when kyle finished his first race, you know we were just sports fanatics we've been doing sports our whole lives it's just.

Brent Pease: No, no different than a lot of young young boys that were into everything at the time football baseball basketball, you name it.

Brent Pease: But none of those really had the full inclusively that endurance sports offers and so when kyle experienced that first endurance activity.

Brent Pease: and realized that it challenged him physically and mentally in ways that he had never been pushed from an athletic perspective, certainly i'm sure as you've experienced with many of your guests, you know living with a disability, has its own challenges.

Brent Pease: And kyle kyle has experienced many of those but what he had never experienced was what is life like as an athlete.

Brent Pease: And really the best way I can describe it to you is is the iron man that it takes kyle and I 14 to 16 hours to finish this.

Brent Pease: And throughout that process it for me there's a there's a physical demand of carrying another human being 140.6 miles, but for kyle he has to keep me engaged i've quit thousands of times in the middle of a race thousand.

Brent Pease: Where i've turned to kyle and begged him to stop or i've grunted and made noises and make gestures, where he can tell that I was trying to find a way to make the date easier.

Brent Pease: But kyle's experiences of living with a disability taught him how to overcome a lot of that and so.

Brent Pease: For him, though he mentally has to be positive for 14 to 16 hours to keep me engaged physically but.

Brent Pease: it's also a challenge on his body, you know he goes from sitting in a wheelchair all day to getting bounced around and push physically.

Brent Pease: In an iron man and so that experience for kyle he wanted other people to have that and that was where the Foundation came in.

Brent Pease: And we were just fortunate that there was other people in the country that had had done or were doing.

Brent Pease: What we were doing from a supporting people with disabilities standpoint, so you know we quickly found the right equipment, you know you can find some of the stuff on Amazon, like everything else.

Brent Pease: A lot of it is just like so much in the disabled, the disability community we get custom chairs actually right here in Georgia and snellville Georgia.

Brent Pease: From a company called eagle sports chairs and then there's another wonderful company in Tacoma Washington called adaptive adaptive star mobility.

Brent Pease: So, most of our adaptive equipment comes from those two companies, and then the bikes come from a company in in winnipeg called freedom concepts so.

Brent Pease: it's a really cool way for us to to teach people with disabilities about not only how to be an endurance athlete but how to do it, like everybody else there's just there's no limitations when it comes to that.

Nadine Vogel: Right. And is your focus children, is it adults, is it kind of all across.

Kyle Pease: um yeah.

Kyle Pease: So we serve all at all ages and all types of disabilities too.

Kyle Pease: We had a child at the age of four to participate.

Kyle Pease: And we had.

Kyle Pease: A gentleman in his 50s to participate in a race. so we accept all ages, all abilities, and ages and abilities to join us.

Nadine Vogel: That that's that's amazing so so kyle if I may how do you manage your CP during a race, I mean, I have to, I have to believe that is above and beyond the things that you need to do to keep yourself going.

Kyle Pease: yeah no absolutely I think the first thing that I had to.

Kyle Pease: manage it.

Kyle Pease: Remain in the moment and.

Kyle Pease: Remember to breathe.

Kyle Pease: We really helped me get though all my spasms you know that, so if I don't breathe my spasms are all over the place i'm really had to the breathing and then focus on.

Kyle Pease: drinking water.

Kyle Pease: Because i'm very bad at drining water.

Norma: And so am I.

Nadine Vogel: Me too.

Kyle Pease: So, So you're going through a race completely going through a race I'm really focus on my.

Kyle Pease: hydration and my nutrition.

Kyle Pease: to make sure that i'm at my best on race day, so I you know I never really been asked that question, so thank you for asking that question.

Kyle Pease: People you know, they need to know that on race day.

Kyle Pease: my cerebral palsy doesn't stop.

Kyle Pease: You know, I maintain but but I never let my disability define, who I am.

Kyle Pease: And I that's very important.

Kyle Pease: And that .

Kyle Pease: Regarless of how my day is going i'm going to go to the starting line with my head held high and.

Kyle Pease: show the world and to motivate my brother.

Nadine Vogel: So with your head held high, tell me where is your head like what is it you have to focus on think about you know to motivate yourself and then we'll talk about motivating brother let's start with you.

Kyle Pease: I you know I I you know I meditate a lot throughout the course of the day and.

Kyle Pease: You know I might say a prayer or I might say something that motivates me to get me over the hurdle, because, there are so many ups and downs in a race.

Kyle Pease: That you really have to experience them and when we're in a low point you have to go there for a second, you have to go to the low, but how do you get yourself.

Kyle Pease: Back on the high what you say, to yourself, so you know I have my motivational quote that I say and um eventually I get back get back on the horse and in focus, on what we do.

Nadine Vogel: Okay, and so that's for you and what do you do to kick your brother in the pants.

Nadine Vogel: And keep him motivated during the race.

Brent Pease: Do you do you guys have an explicit rating on this podcast before he answers that. question.

Nadine Vogel: Nah, nah, go for it.

[laughter.]

Brent Pease: You know what.

Brent Pease: i'll just jump in real quick, I think one of the benefits of being brothers and being such good friends, is that we just both know how the other operates.

Brent Pease: Maybe even think about E-T right that there's this sixth sense of.

Brent Pease: Of of what the other needs and it's usually kyle figuring out what I need and there's times, where there's the calming voice and presence of a.

Brent Pease: loving, caring brother and there's other times, where he cracks the whip and he screams and yells and he pushes and does everything it is to get me going and.

Brent Pease: And you know that's usually in those really tough moments like think about climbing up a hill you know the bike when Kyle and I are on the bike, together with the weight of the bike it's about 365 pounds.

Brent Pease: So imagine pushing.

Brent Pease: 365 pounds up um up the side of a mountain.

Nadine Vogel: I can't imageine.

Brent Pease: It's excruciating we're going four or five miles an hour.

Brent Pease: And in those moments it's screaming and there's some four letter words that come out over and over again.

Brent Pease: But it's it's part of what we both love like we don't come away from those experiences going gosh I don't want to race with you anymore it's.

Brent Pease: Like you are awesome out there, you know you screamed and yelled and then that other time you you basically reached up and told me to you know hold your hand for a second.

Norma: [laughter.]

Brent Pease: It's just, it's just you figure it out and just like everything else.

Brent Pease: in life, especially for people with disabilities, that you figure it out, you know they don't always put the ramp at the front of the building, but you can always find a way to get into that building.

Norma: that's. right.

Nadine Vogel: You know that it, that is for sure you know Norma I both have adult daughters with disabilities, and so we you're speaking our language we totally get it.

Nadine Vogel: Um kyle anything you want to add to that before we go on a quick commercial break.

Kyle Pease: yeah obviouisly we do it differently before we go to commercial you know the cards that we dealt arenot ideal, but you have to play like a winner everyday so regardless of the challenge regardless of the spasms or whatever in may be, but you have to move forward.

Kyle Pease: And focus on the good things in your life and that's what I try to remember.

Kyle Pease: When we're out on the race course together.

Nadine Vogel: All right, well let's take a short commercial break for our listeners do not go anywhere, we are talking with kyle and brent pease and talking about their foundation and norma we'll be right back.

Norma: Okay.

Voiceover: And now it's time for a commercial break.

Voiceover: And now back to our show.

Nadine Vogel: Hello everyone, this is nadine vogel i'm joined by co-host norma Stanley and we're back today to talk with Brent and Kyle Pease.

Nadine Vogel: You know, when we talk about disabled lives matter, I think you guys certainly could be the poster you know brothers.

Nadine Vogel: for for this, because I think that it's important to realize that you know disability is not a cause to support.

Nadine Vogel: That it's a I think kyle you said it earlier, you know it's a part of who you are it doesn't define you.

Nadine Vogel: Right, yes, it makes life more difficult for different things, but you go way beyond.

Nadine Vogel: And when I say way i'm way beyond so i'm wondering, and whoever wants to take this one on for those who maybe have not experienced either be in an iron man or have watched it can one of you share exactly what goes on to compete in an iron man all the components of it.

Kyle Pease: I like.

Kyle Pease: To. It's a 2.4 mile swim.

Kyle Pease: followed by a 112 mile bike.

Kyle Pease: and then followed by a 26.2 marathon.

Kyle Pease: So I do 114 miles 112 mile bike and the 2.4 mile swim.

Norma: So it's like three or four different. Competitive.

Nadine Vogel: Right. Three different events right.

Norma: Okay wow.

Nadine Vogel: and and how long typically does this take you two to complete.

Kyle Pease: So no it could take more than one day.

Kyle Pease: so once it starts. you do not stop until you did it.

Kyle Pease: So normally brent and I take anywhere from 14 and a half to 15 hours.

Norma: Wow.

Nadine Vogel: and and. You know it's not just the day of competition right, I mean I can't even imagine what the training is you do.

Norma: Right.

Nadine Vogel: To prepare for this do you want to give us a little insight into that grueling process.

Brent Pease: yeah so it's I mean look it's a lot um.

Brent Pease: So for an iron man it's you know 20 to 25 hours a week or it's kind of like the big volume which.

Brent Pease: You know doesn't happen till you're in the kind of the final 16 weeks or so, but you know generally i'm training 10 to 16 hours every week non stop you know around the clock year round.

Brent Pease: But that usually 10 to 12 weeks out from a race, we can make sure kyle's involved because, as we talked about earlier.

Brent Pease: it's a demand on his body physically to even though a lot of the physical, even though, when you look at it, it looks like i'm doing all the physical work it's not something kyle's body is acustomed to or even build for.

Brent Pease: And we have to have him ready, because to be out there for that long if you need him to be mentally present if he's not physically able to handle it.

Brent Pease: it's hard to stay in that in that mindset so it's it's a it's a non stop and it's a part time job for both of us, and I, and I.

Brent Pease: I don't say that as a burden, because we're very fortunate that we both work in a world in a in a in a profession that allows us to to serve people with disabilities, but also to serve each other and to be together and do all those things and we're really fortunate in that regard.

Norma: Beautiful.

Nadine Vogel: So brent let me ask. you know.

Nadine Vogel: Having having kyle as a brother, with a disability what has that just on a personal note taught you, has that changed you in in some way either as a husband a parent a brother, you know in any of those roles.

Brent Pease: I mean, I mean it's changed me and all of those roles, I mean, I think it had a profound impact on me as a as a young child.

Brent Pease: And it gave me compassion and patience that still live with me today, and all that I do it certainly helps with kyle and all of the athletes and families that we serve through the Kyle Pease Foundation in all the ways that we try to.

Brent Pease: enrich their life and their experiences and especially in sports, but as a parent and as a husband to be able to.

Brent Pease: step back and be patient and be compassionate instead of thinking solely about my needs are what I you know we all do it it's natural we're taking care of ourselves, but to understand caring for another human like that.

Brent Pease: i'm very blessed and incredibly fortunate that you know, having kyle as a brother gave me so many of those skill sets that I think are somebody would tell you that was if you were asking somebody else would say that you know those are some of the qualities that they admire that I possess.

Nadine Vogel: That's great. Thank you, so if we think about the kyle pease foundation what you know what's your obviously your multiple messages here, but you know what is it.

Nadine Vogel: But let's let's break it up, what is your message to others with a disability and then, what is your message to everyone else, as a result of the Foundation.

Kyle Pease: That that great great question, I think.

Kyle Pease: My message to all of our athletes that we serve. just just.

Kyle Pease: to remember that we all have our unique challenges that we face.

Kyle Pease: When they come to the kyle pease foundation when they come to a race, I really want them to forget about that eventhough it is a part of them. I want to.

Kyle Pease: make them feel comfortable and want them to know it's okay to be yourself, you don't.

Kyle Pease: Have to pretend to be anybody else, just be yourself. I think you know that goes with. you know it goes with inclusion because we fight for inclusion everyday of our lives.

Kyle Pease: To be. To be valued, you know to fell part of. to enrich others and to leave this place better than we saw it yesterday, and I think you know where we do that, then it's guide the winner for ourself.

Nadine Vogel: Right. Thank you. And then, for you know the parents, the family, the other family members siblings anybody who then doesn't have a disability what's your message.

Kyle Pease: To kind of watch us.

Nadine Vogel: [laughter.]

Kyle Pease: It really it, be it be is to.

Kyle Pease: The way that we do life because we do do it differently. but we have a great we have a great time doing it. you.

Kyle Pease: know and then at the very end of the day, we all have one goal and that is to get to the finish line of the race. and I think that we give. I mean, you know that are. that we get by with a little help from our friends.

Kyle Pease: that what we do with the volunteers with. the parents.

Kyle Pease: You know, they don't help, but they do the critical work but brent does the physical work.

Kyle Pease: But I'm with him 100 percent.

Kyle Pease: I think that that's what we had to focus on that, we all need help and some more noticable than others, but we all need help. to reach out goals.

Nadine Vogel: And and I guess it's it's being comfortable asking for the help and then at some point being able to articulate what kind of help you need right because I think that's a process as well.

Nadine Vogel: And and for Brent what would you say what's your message that you know as as the brother of that you want to get out to folks who may be siblings of or parents of individuals with disabilities.

Brent Pease: say what my dad said to one of our first board members and that's that it's going to be okay.

Brent Pease: And I think so many times, you know when you experience that I mean I experienced at a very early age, I mean those are my earliest memories of kyle.

Brent Pease: And it's going to be okay it doesn't mean that it's going to always be easy or that it won't be hard and challenging at times but it's going to be okay.

Brent Pease: And and somebody like kyle or any of the athletes of the kyle pease foundation are living embodiments of that and and what they accomplished every single day of their lives.

Brent Pease: And it's going to be okay.

Nadine Vogel: Thank you. Thank you. and those involved with the foundation um are they from all over the world, all over the country geographically.

Nadine Vogel: How is that spread out.

Kyle Pease: Yeah so most of them are from, mid counties, but we do have people for Texas and Pennsylvania that come down and join us. so we do have a spread all over the country.

Kyle Pease: And everybody's, welcome to join us.

Nadine Vogel: Thaks great. Well, unfortunately, we are out of time, but what I really want to make sure that our listeners our audience knows how to get ahold of you.

Nadine Vogel: So either you know they want to join you in a race, they are disabled athlete and or they want to help fund, they want to fundraise for you guys. How should they get in touch with you.

Brent Pease: website is always a great place kylepeasefoundation.org.

Brent Pease: um. that's a good place to start that will connect you to all our social media channels. um there's a way to join us as a volunteer as an athlete.

Brent Pease: there's a way to sign up for our newsletter great get great updates on everything that we're doing we just sent out our bicycle kits today actually on our newsletter so you can order your sweet kyle piese foundation bike Jersey.

Nadine Vogel: Woo hoo.

Brent Pease: Which is. Very fashion forward with the big white shoulders, like all the cyclists are wearing today.

Nadine Vogel: I like that.

Brent Pease: But yeah I mean I would start with the website because that's got everything every possible different way to follow and or join our team.

Nadine Vogel: Excellent excellent.

Norma: Awesome.

Nadine Vogel: Well guys I can't say enough Thank you so much, I am just delighted to know more about you and what you're doing and share what you're doing with with the world I that's just me I want the world to know what you're doing and how amazing it is so thank you both very much.

Brent Pease: Thank you.

Nadine Vogel: To our listeners, I know you enjoyed this as much as Norma I did, and we look forward to seeing you on another episode of disabled lives matter more than a podcast it's a movement.

Norma: Amen. Be blessed.

Norma: Everybody. We look forward to the next episode.

Nadine Vogel: Bye bye.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Season 02, Episode 07 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Lu and Dale Picard

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the Disabled Lives Matter Podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley!

Nadine Vogel: Hello everyone, this is nadine vogel one of your host of disabled lives matter more than just a podcast it's a movement, and I am joined, as always, by the fabulous norma Stanley my co host.

Norma: Hello everyone. good to see you.

Nadine Vogel: yeah, I am very excited today, because we are also joined by Dale and Lu picard they are the founders of ECAD educated canines assisting with disabilities organization which was founded back in 1995.

Nadine Vogel: So welcome welcome welcome Dale and Lu and tell us about ECAD what what is it what does it do.

ECAD: ECAD trains breeds and trains dogs for people with physical disabilities, we have trained dogs to work with people with over 60 physical disabilities since it started and we actually have.

ECAD: 100 and approximately 150 dogs working out there today well as we speak, yes.

Nadine Vogel: wow.

Nadine Vogel: Now you said specifically.

Nadine Vogel: physical disabilities, so if someone you know, has other disability types that they need one of these dogs that's not your area of expertise correct.

ECAD: We don't do anything for hearing and we don't do anything for your eyes okay anything that has to do with a disability balancing issues traumatic brain injury ptsd are some of the.

ECAD: places where we place dogs with let me clarify it has to affect your arms and your legs.

ECAD: Okay early and then, if you're a veteran with ptsd on top of the physical disability, then we service, you are not at the position right now to service civilians with ptsd because, in order to do that, you have to have some advisory team

Nadine Vogel: Right okay.

ECAD: installed, but we have it for the veterans.

Nadine Vogel: Okay, that makes sense, so this is amazing so tell us where did the vision come from to start this.

ECAD: go ahead, so I always liked animals and I like baby things and I had my second daughter I couldn't have any babies anymore.

ECAD: So I needed baby things around and Dale got me little chicks first and that didn't really work the puppy thing that worked real well for me, and so we had puppies and just pet dogs, but then my father had a stroke two weeks.

ECAD: After he retired and I was quite upset about that you know my parents always talked about retiring going to Florida and doing, and they were saving their money for this, and they were holding out to do that, and he retired two weeks later, so.

ECAD: I got.

ECAD: I was old enough, I was in my 30s at the time and I had to do something to correct it in my own way.

Nadine Vogel: Right.

ECAD: I trained a dog and helped him.

Nadine Vogel: Oh.

ECAD: I didn't know really what I was doing I just knew to help pull them up off a chair and stay with them when he was in a walker. give him his remote control, but I didn't have.

ECAD: The information behind me so Dale and I talked about it and I went out to California for six weeks and I worked with Bonnie Bergen she's.

ECAD: the guru of service dogs she's really the one who started it in the 70s and I trained with her for six weeks so, then I knew what tasks to teach and I knew what kind of dog what the personality of the dog should be.

ECAD: And that's really what I needed to know Dale needed to know we already knew how to run a business. We had those.

Nadine Vogel: Got it.

ECAD: It was really like the details stuff the dog has to be able to turn a light switch on and off hold the door and hold an open, while you get in and out things like that.

Nadine Vogel: Right right okay oh wow. so that's awesome.

ECAD: Yeah. Then.

ECAD: He went out for six weeks, the following year, and then we never looked back, we just did it.

Nadine Vogel: Right, right. you know it's so it's so interesting you know norma and I had this conversation all the time that you know so many of the amazing things that are out there.

Nadine Vogel: Are because of our own personal experiences personal situations, and I think that, because of that.

Nadine Vogel: You know, it comes from the heart right, you know, like you said you're the business part you have this comes from the heart, we so so thank you for that um tell me what other certain breeds of dogs that you find are better suited for this or that you specifically work with.

ECAD: The industry uses primary primarily Labrador retrievers and golden retrievers, and the reason behind it is because those two.

ECAD: breeds of dogs were specifically bred to serve the person hunter right they're not really the one who went and found the prey they were the one after you shot the prey they went and got it and brought it back.

Nadine Vogel: Oh.

ECAD: Then, like a cocker spaniel Springer spaniel they found the bird pointed at you shot it then they brought it.

ECAD: You know, it was different so the golden retriever and Labrador retriever have been refined to a point where they're the best house dog, they want to serve all the time they say kind of puppy like most of their life so you can keep teaching and.

ECAD: We use primarily Labrador retrievers and golden retrievers for that.

Nadine Vogel: And may I ask how does a German shepherds factor into this because I'm so used to seeing shepherds, you know as part of this as well.

ECAD: The shepherds were more used by the guide dog schools for for your eyes.

ECAD: But even they are pulling back away from the German shepherd everybody's looking for a friendlier dog and more friendly.

ECAD: dog, so you can come down the street with a black lab it parts the sea if you come down the street with a German shepherd it parts the sea, but most people with disabilities don't appreciate parting the sea they like the communication they like the interaction.

ECAD: we're all looking for.

ECAD: a less intrusive dog out in public and more bring it in for you so you're interfacing with your public did your people on the street and for the Blind it works well, because the.

ECAD: German shepherd is a tell dog he tells you don't cross the street yet move. to the left.

ECAD: To the right and when you're blind you don't want people just coming up on you you've got to have a little verbal communication, so the shepherd works very well for them when you're in a wheelchair you kind of want that social contact. You want it, you know in that type of thing so.

Nadine Vogel: Right. and I think you know we were we were talking earlier, I know that you guys are based in Connecticut, but I believe you serve families in quite a large geographic area is that correct.

ECAD: yeah so we try to stay East of the Mississippi just for follow up care and make sure that it's not impossible for us to get to them or them to get to us because many physical disabilities progress as you get older, you might need that follow up care and we need to be there for that.

ECAD: But people move so right now we have dos in probably 26 of the 50 states, including Nevada including you know, on the west coast, but.

ECAD: it's all about it costs a lot of money to train the dogs and then you have to follow up on the life of the team so as a nonprofit we try to keep it in a manageable place.

Nadine Vogel: Right, right.

ECAD: So if I only have to drive three hours or you only have to drive three or four hours to come back that's a lot more manageable than having a fly six.

Nadine Vogel: Right absolutely so you know you mentioned follow up, can you explain to our audience, you know what is the process right so someone you know gets a dog like is there, like a you know, a one year plan a five year plan like How does that work start.

ECAD: Starts with the digging. starts with the application process.

Nadine Vogel: Okay.

ECAD: Okay, so they so they fill out an application is like an inquiry application okay send it to us, we look to see what is a disability, can we train a dog for that.

ECAD: Are you in our service area, do you have support behind you, in case something should happen to you, who will take care of your dog, so all of those are yes, yes, yes, and we send for part two.

ECAD: part two now you have to validate you have to have medical paperwork brought in to us sent to us, you need letters of reference for you need more details about you and then you come into a meeting and greet.

ECAD: You meet some of the dogs, we have you move around with them, but they're not the dogs you're going to get because these dogs are pretty much finished they're leaving soon, but it gives you a good idea of what to expect.

Nadine Vogel: Got it.

ECAD: And because we breed we're pretty much getting the same most consistent dog.

ECAD: Consistency.

Nadine Vogel: right which is probably really important.

ECAD: Very important to know as much as you can know about a dog.

Nadine Vogel: Right.

ECAD: And then and then so now, you did you meet and greet, then we have to fundraise the money to get you this dog, you have to participate in the fundraising part of it, people like to give to people they know so that and we have a fundraising coach that alone could take almost a year.

Norma: To raise the money for the dog.

Nadine Vogel: Wow.

Norma: How expensive, is it.

ECAD: It costs us about $50,000 per dog, to bring them from birth to death, and we have to follow up on the team until they're are no longer a team so.

Nadine Vogel: Wow.

ECAD: So if you have a dog at two, and now the dog your dog lives till he's 12 I have followed up ion you 10 times minimally.

Nadine Vogel: Got it.

ECAD: That's annually.

ECAD: That's assuming your disability didn't get worse.

ECAD: Correct.

Nadine Vogel: And followed up with like a phone call a communication an email or actually getting together.

ECAD: We could see you in person.

ECAD: It depends where you are now maybe I saw you three times, once a year for three years, and now you move to Florida and you've been doing really well okay we'll send you a survey we call you up, we asked for the vet records.

ECAD: They have to send us vet records every year on the dog we watch that as well, and then, so we got all that they come for training they stay with us for 13 days and we lodge them and we train them.

ECAD: More than eighty hours in those two weeks we bring them on field trips and on field trips are going to the grocery store the mall something at night.

ECAD: Either a restaurant and a movie or something we're doing something at night, so you know how to handle the dog in the evening we're going somewhere where there's a lot of kids so you know how to handle that.

ECAD: You know grocery store on a Saturday morning anything so I like to push them one one step past the line of their safety.

Nadine Vogel: Got it.

ECAD: If they're saying Oh, I never go grocery shopping on a Saturday morning no way I only go on a Tuesday or Wednesday we'll start on a Friday and then well get to Saturday. Before.

ECAD: You go home. Just so they know.

ECAD: They can do it, you know.

Nadine Vogel: Right, right.

ECAD: We do that for 13 days, and then we follow up on them with the next six weeks weekly they have what we call after action reports.

ECAD: And it's all computerized but they have to practice every day with their dog on certain things that they need, and they report weekly we reply weekly.

ECAD: And if there's anything going on, then we get a phone call will have them come in, it could be something as simple as oh I didn't realize you had rabbits and now the dogs too interested in the rabbits.

ECAD: So I can't really tell you about how to fix it, then we might have to visit you and show how.

Nadine Vogel: Got it. Got it. wow.

ECAD: And then,

Nadine Vogel: this is amazing.

Norma: It's very detailed.

ECAD: It's very detailed and it's a piece of medical equipment and if you have multiple sclerosis, or you have traumatic brain injury or you have arthritis as you age these things progressively get worse. That's why.

Nadine Vogel: Absolutely. That is for sure.

ECAD: The dog has to get stronger then and that's not the time for me to go back and say well that's going to cost you $1,000, and this is going to cost you seven or eight.

Nadine Vogel: Right.

ECAD: That money that you paid and we raised so we asked the clients to help raise half of it we raise half of it as them to help us raise the other half, and that pretty much takes care of you for the life of the team as far as training brush up classes counseling.

Nadine Vogel: Right. Okay, well, we need to go take a commercial break, because we are I could I don't want to break I just want to keep.

Nadine Vogel: Going by so interesting let's take a quick commercial break and then we'll come back so for our listeners don't go anywhere Norma I will be right back with disabled lives matter stay tuned.

Voiceover: And now it's time for a commercial break.

Voiceover: And now back to our show.

Nadine Vogel: Hello everyone and welcome back to today's episode of disabled lives matter Norma and I are interviewing dale and lu picard of ECAD this has been a fascinating discussion.

Nadine Vogel: And, and you know, on a commercial break, we were just having a little conversation I just want to share with everyone what they told us, which is that.

Nadine Vogel: You know from it's because you breed the dog you train the dog right all of this, that you know, by the time someone's really paired up if you've already put about 24 months into this one dog two year, which is amazing, and I think you said that equates to about 1500 hours of training.

Nadine Vogel: Is that correct.

ECAD: Yep, it include the socialization and the grooming and the training and all that yes.

Nadine Vogel: I know some kids who need that.

Nadine Vogel: Could you transition a little bit.

ECAD: Most most people that have children and leave us ask us to train their children.

Nadine Vogel: See. I knew it I knew it.

Nadine Vogel: So let me ask you a question now that we said children what what's the typical age or age range of your client.

ECAD: Well, depends, so we have three programs, we have canine magic that for young kids with autism.

Nadine Vogel: Okay.

ECAD: And so, then we have open doors that's for civilians with physical mobility, disabilities and they could be children or adults.

Nadine Vogel: Okay.

ECAD: And then you have your project heal that's really focused on veterans veterans with physical disabilities people with traumatic injuries things like that.

Nadine Vogel: Got it.

ECAD: So for canine magic the child needs to be up and walking and pretty stable with himself, but he could be three or four years old.

ECAD: Because. now.

ECAD: The parent is the facilitator.

Nadine Vogel: Right.

ECAD: And the dog acts as the anchor for that child, so the biggest issue with children with autism is their parents don't want to let go of their hand.

ECAD: and any child wants to investigate the world regardless, and they get frustrated, but they can't let go and they don't have a safety valve so.

ECAD: Being tethered to the dog now you have four feet, you can get away mom or dad is tethered to the dog now you got about eight feet, that they can play around in.

Nadine Vogel: That's very cool.

ECAD: and move in that it doesn't if the child jumps up and down or or you know wanders the dog will just kind of go back and we'll just bring them back kind of like a u turn back over to. us.

Norma: Nice. Love that.

Nadine Vogel: Yeah. that's fabulous so.

Nadine Vogel: I think, at one point, you had said, or I heard that is like, as many as a no is it 80 or 90 different commands right that these dogs are taught.

Nadine Vogel: But hearing how you yeah the segment of services that you offer are the commands, I guess, I want to say customized by disability type or by age or How does that work.

ECAD: Well, so we have is kind of like the alphabet there's only 26 letters.

ECAD: But you can make millions and millions of words right.

Nadine Vogel: Okay.

ECAD: So if i'm going to I teach all the dogs heal inside and you know wait and.

ECAD: Basic kind of obedience manners type of things and then.

ECAD: Almost all the dogs, will be able to retrieve will be able to tug but now, where do you want to use it, so if I have a child, with autism.

ECAD: I might want the dog to retrieve toys and bring it back and drop it for him or her right if I want them to tug like we had it we just did a class and kids.

ECAD: And the boy the boy wanted sit on it on an office chair and the dog tugged him, like it was a ride, he was just tugging him all over the training Center.

ECAD: But they were having a really good time he was having he was getting stimulation what he needed to have mom gets to watch and laugh, and not have to run around pushing him. And the dog.

Nadine Vogel: Right.

ECAD: Right. But, but somebody with M-S will need that dog to tug maybe the sock off their foot or tug open a refrigerator tug open a door right.

Nadine Vogel: Right.

ECAD: If you're a veteran with ptsd you forget to take your medication we teach the dogs a medical reminder and the dog tugs on them, they have a little lanyard and the dog tugs them over to wherever you won't stop until you go and get him a cookie because that's what he thinks and noises about.

Norma: Oh.

ECAD: That went on, I get a cookie let's go. You know.

Nadine Vogel: I like that.

ECAD: so that we never want the dog to stress out.

Nadine Vogel: Right.

ECAD: So even you know the child is having a meltdown, we want the dog, to go in and look for a treat so.

ECAD: If so.

ECAD: If we fall on the floor, we start pretending we're crying and and having a little fit we might keep a treat under our chin and he got to come and find it.

Nadine Vogel: Got it.

ECAD: And then we give it to them later on, he has to wait longer to get it.

Nadine Vogel: So.

ECAD: The understanding and not every dog can do everybody's job like some dogs can't do little kids because they do.

ECAD: too excited they might start pawing at their head, you know but that dog might be very good for somebody who has sleep apnea.

ECAD: And needs to jump up an alert for a sound and go get help. you know go get help.

ECAD: it's not only teaching all the commands and the functions to the dog it's also matching the dog's personality to the right personality of the human that's that's where she shines.

ECAD: placing I've seen these things. we'll have five 6000 of training class and we're all thinking is going to be going this way and.

ECAD: When she doesn't go the way you actually thought.

Nadine Vogel: Right.

ECAD: You have to fit the best personality of the dog, with the personality of the person.

Nadine Vogel: Right right so you're also a matchmaker.

ECAD: that's my art.

Nadine Vogel: That is.

ECAD: that's the art of training service dogs it's not the training, because you can train a dog, you have to love them but you can train them it's matching that dog with that person that you don't know very well yet maybe I met them for three hours.

Nadine Vogel: Right.

ECAD: And then, when they come in for team. training I spend four days watching them move and doing stuff and and listening to what they're saying to the dog, you know.

Nadine Vogel: Things like if the.

ECAD: If you have a veteran calling his dog baby and sweetheart and I can't oh my God I can't stand you make me so happy that's a good flag, if you say things like please don't be a pest today, please listen to me i'm like yeah not a good match.

Nadine Vogel: Right right right norma, I think you had a question.

Norma: yeah I just love passion that you guys, have you been doing this 25 years, do you ever get tired of it, it doesn't look like it.

ECAD: No. [Laughter.]

ECAD: The board is asking us when we were retiring I just turned 65 last year, I said, well, not for another five years, maybe longer.

Nadine Vogel: No, this is this is great, so let me ask you this.

Nadine Vogel: What would you say is important new information to educate or guide health professionals, about the use of dogs like this.

ECAD: So we're doing something with pace University on that right now.

Nadine Vogel: Oh.

ECAD: About three years I go so with Joanne singleton she's a professor at Pace University for palliative care.

ECAD: and so her masters students so we're we did a whole thing on the do's and don'ts so warily what you need to do is you need to remember that that person has that dog is not for entertaining of you.

ECAD: it's because it's a necessity, like if it was their wheelchair, nobody would got and pet a wheelchair, nobody would be. oh muah-muah. you're.

ECAD: So cute you know.

ECAD: So you kind of have to ignore it.

Nadine Vogel: But talk to the person.

ECAD: Just talk to the person not not so much the dog and I understand golden's and labs are just so cute.

Norma: They're just adorable.

Nadine Vogel: They are. You just want to. um.

[Laughter.]

ECAD: So I would say that remember the person and remember that they need it it's not an accessory it's a necessity.

Nadine Vogel: Right it's a benefit it's a health benefit like anything else.

ECAD: Yes.

Nadine Vogel: ah so so so let. me ask something that's probably a little more controversial I always like to have some question, right. There has been a big push in recent years about emotional support dogs and that emotional support dogs or dislike service dogs and i'm wondering. if you could comment on that.

ECAD: I only have one thing to say, the emotional.

ECAD: Support dog must have received formal training, they have to be trained to do what they're doing for you, they can't just be like a dog sitting on your lap is not a task.

ECAD: So, and we have come across people who have emotional support dogs with the dog hates being where he is you know the lady who has a little dog on her lap at the airport and our dog all he does is growl all while waiting to get on the plane is not having a good time.

Nadine Vogel: Yes.

ECAD: Your not supporting his emotion or her emotion right.

Nadine Vogel: Right.

ECAD: So it's really about the training and keeping the public safe, even if you're in a wheelchair.

ECAD: And you say this is my service dog if he's not behaving well if he's a nuisance or he's a risk anybody can ask them to leave and it's legal to do that.

Nadine Vogel: Right. right.

ECAD: It's about the training, you have to be the dog have to receive training to mitigate your disability.

Nadine Vogel: When people say well my emotional support dog and a service dog, and the same thing.

ECAD: They are not.

Nadine Vogel: What would you say to that.

ECAD: Service dogs are task orientated do train to specifically give task to help that person mitigate their disability okay so we're mitigating your disability, with the task you can't open a door, so the dog did it for you, you can't pick up something on the floor, so the dog it for you.

Nadine Vogel: Right.

ECAD: You know veterans with ptsd you can't go in somewhere, because if you go in there and a light bla flickers off that could set you into a trigger the dog knows what to do to stop you the dog knows what to do to comfort you and bring you back ground you back.

Norma: Wow.

ECAD: For emotional support if that's what you need, then you need to teach that train that dog to support you emotionally, so you need to know what it can't just be when he's with me, I feel good that's not they're not gonna recognize that.

Nadine Vogel: Right right. I love it Thank you.

Norma: Okay.

Nadine Vogel: Because there's lots of controversy around. it.

ECAD: We we require everyone to get our service dog to get a prescription from the doctor.

Nadine Vogel: Okay.

ECAD: So if you don't have a disability if you're not taking any kind of medication you're not seeing a doctor, and you're not seeing a doctor then you can't qualify on our program to receive a service dog.

Nadine Vogel: Right. Good, good, good and good.

Nadine Vogel: So um.

Nadine Vogel: Thinking about rosie the courthouse dog, so, is there a story behind rosie.

ECAD: rosie rosie was my personal dog she was a breeding female for us, she had approximately 40 some odd puppies but rosie was on my side for the whole her whole life, she was born in my hands and she died in my hands.

Nadine Vogel: Awe.

Norma: Wow.

ECAD: We worked back then we worked in residential treatment schools your children green chimney. green chimneys in brewster is where I worked for 15 years and rosie rosie.

ECAD: Was with me all the time when we really start working at green chimneys I retired rosie and she wasn't happy.

ECAD: And then one day I got a phone call from a group home up in poughkeepsie New York and the gentleman says.

ECAD: Would you have a dog that could provide one of my clients that's going to court to testify against her father that's raped her that could help her testify in court to stay calm and testify in court, I said I got exactly the dog. you need.

Norma: Wow.

Nadine Vogel: emotional support.

ECAD: It was emotional support right, so the dog had to help this child stay calm in court.

ECAD: had to be unintrusive in court, so when the the the girl testified he took all the jurers out of the courthouse court room.

ECAD: brought her the dog and her in situated the dog so they couldn't see him in the witness stand, so they could see the dog then brought the jury back in, and then they they started and she was approximately on the Chair, I believe, four or five hours.

Norma: wow.

ECAD: in question and the answer was very stressed out the attorneys were very demanding and pointing fingers at her and she froze on the Chair.

ECAD: When she froze on the chair is when rosie woke up, and this is the reporter sitting on the other side of the Court room writing this said the dog woke up, the dog sat.

ECAD: The dog put its nose underneath the girl's arm she had her arm on the armrest and as they were.

ECAD: posing the question she was just getting a little nudge a little funny she gave this big nudge in the girl's hand came up and knew when the finger came down it stopped at her father and pointed out the person had violated her.

Norma: Wow.

ECAD: got him convicted That was the first case in New York, we had to go had approval from every judge every person that works that training.

ECAD: Six weeks eight weeks, we had to let her leave us and stay in poughkeepsie so So when I went to the group home to introduce them to rosie.

ECAD: I brought a bag of food with me and I never met these people I drove up to poughkeepsie from dobbs ferry I had her and a bag of 40 pound bag of food in the back of my car, but I knew she wasn't coming back home.

ECAD: And I met the team, the team was satisfactory and I left her there.

ECAD: And then I met the girl later on, I had not met the girl yet so rosie stay there for six weeks i've just got a weekend here in a weekend there I go up and get her because I wanted her too.

Nadine Vogel: Sure.

Norma: Yeah.

ECAD: And then it was time to go to court and the dog and they were afraid of that the dog was not going to settle in.

ECAD: So we set up a fake.

ECAD: A jury box.

ECAD: And she came in with us because it real tight she didn't like tight spaces and we set up a fake one with a chair and, from time to time would have children or people sitting in the Chair, we just kept bringing the size tighter and tighter and.

ECAD: She wasn't reacting in a more, and then we say okay she's ready to go back we sent her back.

ECAD: right time for the Court date she had to have training to.

Nadine Vogel: Sure, no absolutely that's amazing Thank you.

ECAD: She was 11-12 years old, when she did that.

Norma: yeah.

Norma: Then she was a senior yeah and.

Norma: You still feel the pain of.

ECAD: They post her picture on Facebook all the time, I see her picture I start crying like a baby.

Nadine Vogel: Awe. Well she was your baby right.

ECAD: My job at ECAD is not only the executive director.

ECAD: i'm also the person that delivers all the babies yeah.

ECAD: I have a personal attachment every single one of these puppies.

ECAD: I gave him all life they're all born in my hands Okay, then i'm sometimes lucky enough to keep one of them with me.

ECAD: And then. The others graduate and move on.

Norma: Awesome.

Nadine Vogel: So. Let me, let me ask you this as we're just about out of time, unfortunately i'm is it if you can think of one thing is there anything that I haven't asked that you want people to know about ECAD.

ECAD: Just that we're here to serve the people with disabilities and just guys.

ECAD: You are the clients never forget that you're the consumer you're the clients you're not the charity you're not ECAD is the charity you're the client you're the consumer.

ECAD: And, and I always believe that when we started that's why we have the the client help us raise the money, because if you helped us raise $25,000 you have some expectations of us and you have some demands of us and you're not about to be quiet, if you want them and.

Nadine Vogel: If folks want to get in touch with you, either because they want to give you money, which should be a good thing.

ECAD: That's a great thing.

Nadine Vogel: that's a great thing right or they need the surveys, or anything, what would be the best way to reach you guys.

ECAD: They can reach us at ECAD1.org and go on our website and we have a very nice website, they have videos they can watch.

ECAD: They have. Patient application is there, so that would be a way to get ahold of us, or they can call at 860-489-6550 and ask to talk to dale, carrie, Lu we're all Picards.

Nadine Vogel: Excellent Norma you want anything else you'd like to add.

Norma: No, I love it, I know, thank you for what you do i'm a big fan of golden retrievers and Labrador so thank you and you know i'm looking forward to learning more about your organization, if my daughter ever needs a service dog.

Nadine Vogel: Absolutely and and my older daughter does have one, so I totally understand what you all do and are so appreciate from the bottom of my heart, so thank you.

Nadine Vogel: And to our listeners, I know that you are going to support ECAD so reach out to them, let them know how you can help or if you need their help, and we will see you on another episode of disabled lives matter. norma.

Norma: Thank you, be blessed everybody.

Nadine Vogel: bye everybody.

Norma: bye bye.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Season 02, Episode 06 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Venessa D. Abram

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the Disabled Lives Matter Podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley!

Norma: Hello everybody, this is norma Stanley and you are listening and watching us well listening anyway on disabled lives matter, this is a podcast that we are believing will be a movement geared towards generating awareness and making sure that the disability community is heard and.

Norma: vocalized and activated and mobilized to do the things that need to be done to maximize everyone's potential and to make sure that this society that we're living in.

Norma: is being accessible and inclusive and having all the things that are necessary for our communities to thrive so i'm thankful to be a part of this as a co host miss nadine vogel.

Norma: Is.

Norma: not able to be a part of it today, she had an emergency she had to attend to but she will be back and i'm excited to.

Norma: To have our guest today, who was going to share some really critical information I think so so really needed in the area of.

Norma: Mental health and really just checking into the things that we need to know and maybe.

Norma: Help us understand about mental illness and how it impacts us as a community we've been seeing a lot of stories and news items about people who seem to.

Norma: Have it going on, have so much to live, for they are taking themselves out and.

Norma: I want i'm able to share her own experiences personally and professionally i'm gonna say a little bit about her, she is an author, she is a radio personality and she is the founder of.

Norma: Self discovery pain positioning and purpose she's also speaker and a facilitator of the National Alliance of mental illness, to the nation's largest grassroots Mental Health Organization and that she's dedicated her own life to helping to.

Norma: Get rid of that stigma.

Norma: With regards to mental illness and suicide and I met her years ago and I.

Norma: You know I love the work that she's doing she's impacting so many lives around the country and around the world, and I want to make sure that she came on because.

Norma: Mental illness is an invisible disability and a lot of people do not realize that, so thank you so much for being a part of disabled lives matter today.

Venessa D. Abram, SDp3 Inc.: Thank you so much for having me norma Thank you.

Norma: Well, you know I would do kind of share your story as to you know why you even found it of self discovery, because it's a powerful story and people need to understand that we're all.

Norma: But a breath away then possibly making us, you know some of the decisions that you made so tell us a little bit about self discovery and how it came to be.

Venessa D. Abram, SDp3 Inc.: Well self discovery, first of all I want to thank you norma for all that you do, and all of your love and support.

Venessa D. Abram, SDp3 Inc.: from day one Thank you so much, and thank you for having me self discovery pain positioning and purpose incorporated it's a 501 C three organization.

Venessa D. Abram, SDp3 Inc.: that's on a mission to eradicate suicide by creating mental health Suicide Prevention mental health first aid Community resilience.

Venessa D. Abram, SDp3 Inc.: mindfulness workshops and educational tools and tips, so that we can know what to look for when we become depressed or down or Whatever the case may be, the story behind self discovery is.

Venessa D. Abram, SDp3 Inc.: I had been in pain for the majority of my life and I didn't understand why, and I have attempted ah six times and the last attempt.

Venessa D. Abram, SDp3 Inc.: They said that I was a miracle, and I should not have lived and then just five years ago my older brother.

Venessa D. Abram, SDp3 Inc.: US army decorated veteran passed by way of suicide, so I allow my pain to position me for purpose by sharing.

Venessa D. Abram, SDp3 Inc.: The things that I am continuing to learn, by way of being connected to NAMI national Alliance of mental illness, by being on a pass Advisory Board for.

Venessa D. Abram, SDp3 Inc.: D-B-H-D-D which is development of behavior health and disabilities organization here in Atlanta and many other organizations as well to get the message out that there is no silence and no shame when it comes to our mental health.

Venessa D. Abram, SDp3 Inc.: What I want to share is that many people are are silenced because they're afraid of what someone will say and it's in everybody's family there's no health normal without mental health none zero.

Norma: Yes. I know for a fact that my mom who passed on now that suffered from mental health issues most of her life and we didn't know it didn't recognize it and she.

Norma: Was paranoid schizophrenia was her her situation and it just came from the abuse she had suffered as a young girl.

Norma: um and in her marriage and you, but you don't know as you didn't know what we were looking at.

Norma: And in those days, people didn't they didn't pay attention to things like that, and so you know she lived her whole life you know without really addressing it.

Norma: And you know she would act differently and weird with us and we were like okay that's just moms we didn't know, there was something there that needed to be tended to from a mental standpoint.

Norma: And so you know my goal now as the mother of an adult daughter with disabilities and as a disability Community advocate and just somebody who just I.

Norma: it bothers me to no end that so many bright futures are being.

Norma: You know, taken out because of losing hope that was I was hoping that you could share from your expertise and you know from what you have dealt with personally what can people look for what what are there signs that people can really recognize because.

Venessa D. Abram, SDp3 Inc.: Yes,

Norma: Because I think it would be helpful for some people to know.

Venessa D. Abram, SDp3 Inc.: Absolutely that's a great point norma there are signs signs is usually the opposite of the way a person usually act that they're acting or behaving in a way that's the opposite.

Venessa D. Abram, SDp3 Inc.: of their norm, those are things that you look for things like when people are giving away their things are buying guns we're talking about death or lost a job, had a major life change whether it's a divorce.

Venessa D. Abram, SDp3 Inc.: Children, even in this pandemic, there are so many.

Venessa D. Abram, SDp3 Inc.: Yes, many, including actors and actresses that are taking their lives, but that doesn't include those that are taking their lives every 22 seconds or 22 minutes.

Venessa D. Abram, SDp3 Inc.: as it relates to the veterans so no one, the signs, first of all, not being silent and standing in your truth and transparency and understanding that hey that there's something going on with me and I need to seek help.

Venessa D. Abram, SDp3 Inc.: And then, secondly, knowing the signs and the red flags and triggers triggers all those things that set a person off to go into a crisis mode.

Venessa D. Abram, SDp3 Inc.: Such as it could be a family member, it could be a person place or thing that would trigger us say, for instance, if someone was struggling.

Venessa D. Abram, SDp3 Inc.: on domestic abuse and hearing loud noises that is a red flag and that can trigger them to go into a ptsd crisis or even anxiety, so it is a never ending.

Venessa D. Abram, SDp3 Inc.: Educational thing that we should not take for granted, because it's a silent killer it's a silent like for cancer or.

Venessa D. Abram, SDp3 Inc.: Diabetes for signals we could we make and see the sickness, but because it's in our mind, we cannot see it, we cannot see it and therefore.

Venessa D. Abram, SDp3 Inc.: Many people think that we are okay just for instance for me i'm learning that in my journey self discovery self discovery is knowing who you are.

Venessa D. Abram, SDp3 Inc.: Who, you are not being who you're becoming and the process and as i'm becoming You know, as I am standing strong and the gap for so many people in the Community across the world who's there for me.

Venessa D. Abram, SDp3 Inc.: You know my faith definitely but you know i'm sure you've heard the term of who's there for the strongest person when you know as a person looks at me as being strong and which i'm not.

Venessa D. Abram, SDp3 Inc.: Is all through god's grace but who's there for me when i'm in need because each day is definitely a struggle and it's a fight.

Venessa D. Abram, SDp3 Inc.: For one's life until you leave here and that's the thing it's not a compartmentalised illness mental illnesses, is for the rest of your life, you have to.

Venessa D. Abram, SDp3 Inc.: seek professional help you have to get the type the type of care that you need whether it's group whether it's one on ones therapy getting around like minded people and then not only that learning about mental health and wellness.

Norma: Exactly because you know that you know I could attest to is actually.

Norma: Having depression and not realizing I was depressed i'm you know after my husband's passing way 13 years ago I went into a period of depressing a depression and I didn't recognize that I didn't know that's what it was I.

Norma: want to I slept a lot didn't realize that's what it was I am somebody who likes to dress I like to dress up, but most of the time.

Norma: I was frumpy looking I was you know, I was wearing.

Norma: Uh very casual stuff in public, I don't generally do that, so I didn't realize it my friends noticed it but they didn't realize that that's what I was dealing with.

Norma: Because it was so different from the way I usually act and, you know the sleeping and everything I just thought I was tired, but I was always sleeping.

Norma: And it wasn't till after my husband passed and I will you know I had to make some life changes that I realized that I was truly in a depressive state and and had no idea what I was dealing with and I thank God that he he brought me out of it actually have.

Norma: family members who on meditation but depression and also seem like have everything in their lives to go, you know living, for I mean wonderful careers, and I mean one of my older sister she's retired now.

Norma: But she is on medication for depression it's like what do you have to be depressed about it, you don't know I mean sometimes I guess it's a chemical imbalance or something I don't know but.

Norma: You know, I thought she's living the life of Riley but she's on medication for depression so my thought is it a family thing is it passed on through genes, because you know I have, I have a few members of my family who have serious mental health issues.

Venessa D. Abram, SDp3 Inc.: yeah absolutely, it is definitely it can be generational it can be also.

Venessa D. Abram, SDp3 Inc.: situation or situations so absolutely can be passed down in the bloodline but, as you said earlier, our foreparents our foremothers and forefathers they didn't get help.

Venessa D. Abram, SDp3 Inc.: You know just think when they were in the fields when they were picking cotton and when people were getting beat and they had to see that and their wives getting raped and all of that.

Venessa D. Abram, SDp3 Inc.: They didn't have what we have today, so it definitely speaks volumes of why it was quiet and hush hush but.

Venessa D. Abram, SDp3 Inc.: We are in a time where things have changed and changing and a lot of us are not willing to change, you know, we want to just be the same, and we cannot what goes on in the House today cannot stay in the House.

Venessa D. Abram, SDp3 Inc.: So we really, really have to seek the education to know that mental health it, there is no health without it and it's no different than diabetes, cancer.

Venessa D. Abram, SDp3 Inc.: high blood pressure, any other illness is just silent and you can't see it until maybe we get worse and I may walk around with a coat and one boot and one shoe and things like that that's when it becomes a noticeable.

Norma: Yes, ues i'm just doing some research, because I want to educate myself on it as the mother of an adult daughter with disabilities and has a disability advocate.

Norma: And you know, having friends who are now losing their adult children the transitioning and going through some stuff and I want to be able to help them, you know I don't know what to say because I know, if it was me.

Norma: I would want somebody to reach out to say something, and I want to be able to know what to say, but I can only imagine that's a big void in your life when you been the primary caretaker for.

Norma: You know, a child who has now become you know, an adult so 30-40 years that you've been working with them and loving them and then they're no longer here.

Norma: That i'm sure it's going to take a mental and emotional toll in so many ways and i'm you know, I just want to know what I can do to kind of ease the pain or offer support and comfort in some way.

Norma: And I was just reading doing a little research and I said, you know mental psycho social disabilities represent a significant portion of the world's population.

Norma: Of special needs of the World Health Organization estimates and millions of people have mental disorders. There are one in

Norma: Four people globally experience mental disorder in their lifetime, is it almost 1 million people die each year due to suicide, which is the leading cause of death among young people and.

Norma: That's the part that really concerns me i'm going to tell the young people don't seem to again don't have hope they seem to think that you know, whatever the situation is the new dealing with a particular time that there's.

Norma: no need to go on and that is just very concerning to me, and so, yes, my goal is to reach out and connect with organizations like yours towards who are training and facility and teaching people.

Norma: How to address these types of things, because you know as i'm one of those people, I believe it takes a village, like you, you know there's nobody that I can think of, you know i'm the one people tend to come to when it comes to things dealing with a disability Community that's in my circle.

Norma: But who do I turn to when and if I ever have a situation i'm not quite sure, I'm still working it out.

Norma: So you know this.

Norma: tends to happen to the strong ones.

Norma: In the group the strong ones don't necessarily get the same kind of support, because everyone's so used to them being strong.

Venessa D. Abram, SDp3 Inc.: Right that's.

Venessa D. Abram, SDp3 Inc.: very true Let me read a couple of things for you suicide warning signs talking about wanting to wanting to die or kill themselves, this is from the Suicide Prevention Lifeline.

Venessa D. Abram, SDp3 Inc.: looking for a way to kill themselves talking about feeling hopeless or having no reason to live.

Venessa D. Abram, SDp3 Inc.: Talking about feeling trapped on unbearable, these are just a few of a list extreme mood swings you know, one of the best things to do is to seek help.

Venessa D. Abram, SDp3 Inc.: When your feeling, you know down and out, and I want to give you the number, the number of to Suicide Prevention lifeline is one 800 273 T-A-L-K.

Venessa D. Abram, SDp3 Inc.: 800 273 8255 and norma in July that number will be going to 9-8-8. legislation has passed a law that just as 9-1-1 for emergencies.

Venessa D. Abram, SDp3 Inc.: There will be a 9-8-8 But then when we someone is in a crisis, you ask for C-I-T a Crisis Intervention Training Officer to come out because not every officer, is trying to deal with crisis and mental health situations and de-escalate it so you always ask for a.

Venessa D. Abram, SDp3 Inc.: Crisis Intervention Officer.

Norma: And that's important. We going to bring that back when we come back from the break because that's, especially in in the communities of color.

Norma: Because a lot of situations where people are being killed by the police, there were mental illness or mental health situation going on and they didn't recognize it and they were saying.

Norma: that the person was dangerous or whatever, and so that's something that we definitely want to speak on a little bit more so i'm going to come back with disabled lives matter stay tuned.

Voiceover: And now it's time for a commercial break.

Voiceover: And now back to our show.

Norma: And we are back and speaking with miss Vanessa abrams who is.

Norma: Just an amazing young woman who was doing some amazing and such needed things in our communities in the area of mental health and suicide prevention.

Norma: And you know she's an author and she's a she's a radio personality and she had dedicated her life to.

Norma: Putting together programs and facilitating programs and training on recognizing you know some of the symptoms and things that we need to be able to be alert to.

Norma: To help our family members and loved ones who may be going through mental crises, and so we were talking a little bit about you know, those of us who are strong don't really necessarily.

Norma: may not have the same kind of support, because people so used to us as being strong, how do you handle that what do you recommend for those of us that we have to be there for everyone and that's draining to us too and it's also.

Norma: Possibly ment messing with us mentally we don't even realize it you always have to be strong, you always have to be there, you always dealt with this don't let emotion show I do know that when I am in my late 40s.

Norma: I developed epilepsy and adult onset epilepsy came from stress, which came from, I guess, not realizing I was I had too much going on it's just trying to push through push through and not deal with.

Norma: That so it manifested itself physically in me having to start having seizures and i'm no longer on medication for it, but that was a wake up call that we have to take care of ourselves.

Venessa D. Abram, SDp3 Inc.: Because.

Norma: I have to be here for my daughter, and I can't afford to not be here, so I don't let myself get overstressed and i'm really pay attention now to my body.

Norma: And, and how I'm reacting to the things that I never really did before, so I just wanted to talk a little bit about you know some of that and what people can do, who maybe have gone through some of those same challenges.

Venessa D. Abram, SDp3 Inc.: Health care is a must self care is a must, I know we're taught about to guard our hearts because out of it flows, the issues of life and i'm still learning how to guard my heart being on this mission.

Venessa D. Abram, SDp3 Inc.: To remove suicide it is it's a spiritual call this is not.

Venessa D. Abram, SDp3 Inc.: A call where I can get paid enough money to do this, I love, what I do but, yet it is draining.

Venessa D. Abram, SDp3 Inc.: Because people you're you're actually doing the great Commission efficient for souls, and to impart hope into them.

Venessa D. Abram, SDp3 Inc.: And usually you have a call and anointing on your life and i'm learning that I have to pull back, I have to unplug I have to.

Venessa D. Abram, SDp3 Inc.: not communicate with people and get off of social media have my team do on social media and then sometimes I have to retreat and just go away.

Venessa D. Abram, SDp3 Inc.: And not even do any work, but just be with God and nature, so that I can get revitalized rejuvenated refilled and find my new.

Venessa D. Abram, SDp3 Inc.: My new journey and purpose from what's common from the mouth of God because I do go to the mountains.

Venessa D. Abram, SDp3 Inc.: to retreat and just get away, but even practicing mindfulness affirmations positive affirmation I am worthy I am great.

Venessa D. Abram, SDp3 Inc.: I am fearfully and beautifully made in god's image, I can do this I am worthy, even though I may not feel like it, I am worthy so speaking life over yourself, because there is power in words and many of us have have mental health issues.

Venessa D. Abram, SDp3 Inc.: there's some type of mind there's some mind.

Venessa D. Abram, SDp3 Inc.: thought process problems, if you will, and that's why there's a.

Venessa D. Abram, SDp3 Inc.: Many curriculums out there one is mindfulness minding your mind.

Venessa D. Abram, SDp3 Inc.: watching what you think watching what you see.

Venessa D. Abram, SDp3 Inc.: What you speak watching what you allow to even come into your sphere, that means people places and things which can trigger you is is a very tedious tedious journey, because you have to protect and guard yourself.

Norma: It is one of the things that I think people always ask me, you know how do you do and how you just you always seem to.

Norma: keep going you just never stopping and taking care of Sierra building all your businesses you're kind of doing all these things, then you always seem to be full of joy and it's because I do not watch the news and i'm a journalist.

Norma: I cannot watch the news.

Norma: And and stay sane it, it just gets to me.

Norma: and I try to avoid it and television and I try to avoid the Internet but somehow it pops up here and there, and you see the headlines and you.

Norma: know and anything having to do with the abuse of children and abuse of vulnerable populations people disabilities things like that takes me to another place when I see that happening.

Norma: And i'm I have to I can't do it, and so I learned to protect myself that way and, like you say, can you pick those positive things daily you know. Because.

Norma: It will take you to a dark place.

Venessa D. Abram, SDp3 Inc.: easily easily.

Norma: And the things that I and that's for anybody, I mean truly successful people don't watch the news they don't turn on.

Norma: The television they really don't because what you get is bombarded with all of these negative messages and you know so it's it's self protection. to me.

Venessa D. Abram, SDp3 Inc.: Yeah.

Norma: To block a lot of that stuff out so that I can, because it will shut me down, and I have too much to do.

Venessa D. Abram, SDp3 Inc.: Right, right.

Norma: To pay attention to those things.

Norma: And so you know it's so important, but I wanted to ask you about the veterans because your brother, with a veteran and that's a community that.

Norma: doesn't get enough attention about the things that they have dealt with as people who have served our country and i've seen and that ptsd that that people not really paying attention to it, they really need help and I don't know if they're getting it at the level, they should be getting it.

Venessa D. Abram, SDp3 Inc.: And that's a fully loaded question.

Venessa D. Abram, SDp3 Inc.: i've been interviewing veterans on my radio show female veterans and they talk about the ptsd that they've acquired in the war or Korea or whatever it is that they went to serve for their.

Venessa D. Abram, SDp3 Inc.: assignments their tours and they talk about how they come back damaged and many don't seek to help because of being ashamed in the military, you are supposed to be built, strong and not to break right.

Venessa D. Abram, SDp3 Inc.: But imagine, as my brother would tell me.

Venessa D. Abram, SDp3 Inc.: Standing next to his friend that's step one step and stepped on a landmine and, as he blows up in front of you imagine having to kill a kid because the kid is fully strapped.

Venessa D. Abram, SDp3 Inc.: With a rifle rifles and having to kill the child So these are some of the stories that i'm getting you know back from the veterans and the V-A.

Venessa D. Abram, SDp3 Inc.: I mean there's so many veterans that are homeless that are definitely mentally and emotionally unstable that are homeless and some don't want to help.

Venessa D. Abram, SDp3 Inc.: Some don't want to help some feel like nothing is wrong with me.

Venessa D. Abram, SDp3 Inc.: And that right there there's a red flag all by itself, when you say something is wrong with you, but yet you're talking in circles and.

Venessa D. Abram, SDp3 Inc.: You can tell from the conversation there's something going on there, the V-A is doing doing things, but you know I am rolling out a program this year for veterans and veterans families what we're going to educate them about mental health and wellness and do different activities surrounding.

Venessa D. Abram, SDp3 Inc.: And honoring my brother as whether it's a chat and chew whether it's a chat and paint.

Venessa D. Abram, SDp3 Inc.: And we're gonna be talking about our struggles, as it relates to mental health and wellness and then.

Venessa D. Abram, SDp3 Inc.: Making it an event where it's fun making an event where it's safe and it's a safe space to share, because what many people do is they will share.

Venessa D. Abram, SDp3 Inc.: A part of their heart once you stand in your truth and transparency and using this done when you've been on tour with me and then people will begin to speak up when you share what you shared but I don't feel like the V-A is doing enough, especially for our people that are going.

Venessa D. Abram, SDp3 Inc.: away our lives, and then they come back mangled and many take their lives, many take their lives and not only their lives they're taking their family lives with them so it's um.

Venessa D. Abram, SDp3 Inc.: that's why so important for me to do the work that I I do, because I know I can't reach them all and God knows I want to, but if I can touch one my living is not in vain and.

Venessa D. Abram, SDp3 Inc.: At the same time as i'm touching one they're touching one so each one reach one each one teach one and then will become you know you say it really it takes a village nowadays it takes more than a village.

Venessa D. Abram, SDp3 Inc.: For this thing that we're in, and this is an epidemic, on top of the pandemic where mental health and emotional wellness is challenged to the utmost suicides has quadrupled homicides have.

Venessa D. Abram, SDp3 Inc.: quadrupled crime, I mean it goes on and on and on police brutality, it goes on and on and on, so the thing that I can share where people get the education we perish for lack of knowledge and if we don't get the knowledge.

Venessa D. Abram, SDp3 Inc.: We will perish when you know better, you do better, many of us don't know better, many of us knew know better, but we don't do better, but yet.

Venessa D. Abram, SDp3 Inc.: For me, I just know that I have to stay in a light, because I know the damage that I could do to myself.

Venessa D. Abram, SDp3 Inc.: And that's not what I want to do even in the midst of pain, even in the midst of turmoil and troubles, yes, I still have them each and every day and, but I have to fight.

Venessa D. Abram, SDp3 Inc.: Through by my prayer by medication by keeping in contact with people such as yourself and other people that support me and and pray for me and pray with me and today we having our 90 minute.

Venessa D. Abram, SDp3 Inc.: Mental wellness workshop where we're going to talk about Suicide Prevention and mental health and wellness.

Venessa D. Abram, SDp3 Inc.: And the Community resilience model we have over 25 people registered for that today and it's virtually.

Venessa D. Abram, SDp3 Inc.: And i'm saying that because it's so important to get education, I cannot stress that enough, the education, then you get it in you.

Venessa D. Abram, SDp3 Inc.: And then you begin to embody it and then you share it with somebody and it's just like continuing to recycle itself and then before you know the whole community or know okay.

Venessa D. Abram, SDp3 Inc.: There may be a problem with me what is OK, to get the help that I need it's. Okay, not to be okay, but it's not okay to get through, get the help that you need.

Norma: What about some share I want you to share the map programs couple of other things that you are building out over the next few months, so that people can get an idea of some of the help they can get virtually, through the Program.

Venessa D. Abram, SDp3 Inc.: Sure some of the programs that we're offering this year is the wellness recovery action.

Venessa D. Abram, SDp3 Inc.: program which i'm partnering with Georgia, medical consumer network that is creating a wellness recovery action plan W-R-A-P.

Venessa D. Abram, SDp3 Inc.: so that you can have that plan in place, just in case you want a crisis and it's there, and if you're not able to care for yourself it's in your W-R-A-P plan.

Venessa D. Abram, SDp3 Inc.: And then there's also a W-H-A-M Whole Health Action Management and that's a plan that you manage as relates to planning for your entire health.

Venessa D. Abram, SDp3 Inc.: Health and being and then also be we have the Suicide Prevention programs, we have the resiliency Program.

Venessa D. Abram, SDp3 Inc.: That talks about how to stay in your resilience zone and any and every event that we have you can get on our website to register.

Venessa D. Abram, SDp3 Inc.: At www.sdp3.org to become a part of these free trainings usually norma these trainings are hundreds of dollars and gratefully and and humbly I am grateful that we have grants through these organizations that are providing these tools that we need to put in our life's toolbelt.

Norma: Awesome. awesome and that's the kind of thing that people really need to know about and access.

Norma: How often do these trainings happen.

Venessa D. Abram, SDp3 Inc.: The trainings happen uh.

Norma: Well one is happening today, but this is a weekly show. You can't take it today, but it is a repeating opportunity.

Venessa D. Abram, SDp3 Inc.: We have one March 15 and you can sign up again on my website for March 15 but then we also have have other events that are going on as well, we have groups weekly groups virtually.

Venessa D. Abram, SDp3 Inc.: where you can get on the call and it's called the SDP three table talks we can get on a call and just talk about our day our struggles.

Venessa D. Abram, SDp3 Inc.: Maybe in part, helping someone someone in part, helping to me, but just having a safe space to share openly is so necessary and needed for everyone to just be able to dump.

Venessa D. Abram, SDp3 Inc.: and not be judged and be around other people that suffer the same ways that you do and know it's okay they're going through it and I can make it dude I want what you have, what did you do to get there.

Venessa D. Abram, SDp3 Inc.: it's an ongoing work for its own progress, let you will definitely get there you have to work it, you know what you have to work it, you have to work, the program of recovery.

Norma: it's like anything else.

Norma: You got to put the work in there's no way to get around it and and something like this is so critical you know our mental health, as well as our physical health same.

Norma: You know the same attention people take to the working out doing the things in the gym and whatever you have to do the same to detect and, like guard your mind um.

Norma: And it's very, very important thing to do so, you know I think we are running out of time, but.

Norma: I thank you so much for taking time out of your busy schedule, cause you've got going on in terms of all that you're offering through self discovery the pain positioning and purpose and I just want to give you all the kudos for doing what you can.

Norma: do having gone through what you've gone through, and you know much continued success to you, and if there's anything you know we can do to be of assistance let us know, but you know it's very, very important work and so God Bless you.

Venessa D. Abram, SDp3 Inc.: thank you norma same to you, thank you.

Norma: Thank you okay and we'll Thank you guys for being a part of our show, and we will see you again soon on disabled lives matter be blessed.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Season 02, Episode 05 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Ian Wyllie

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the Disabled Lives Matter Podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley!

Nadine Vogel: Hello Hello Hello welcome this is nadine vogel your co host of disabled lives matter and joining me, as always, is my fabulous co host Norma Stanley.

NORMA STANLEY: Hello everyone.

Nadine Vogel: Today we are really excited about our guest Ian Wyllie. Ian

ian Wyllie: Sorry, thank you.

Nadine Vogel: Ian. Thank you for joining us.

ian Wyllie: It's a great pleasure to be with you from this side of the Atlantic where it's evening. But uh.

ian Wyllie: Good evening good morning.

Nadine Vogel: And where are you exactly right now.

ian Wyllie: And i'm in the south of England.

ian Wyllie: Just near where my boat is.

Nadine Vogel: And, and you said, your boat so for our listeners this is going to be a very important word.

Nadine Vogel: [Laughter.] As part of our conversation.

Nadine Vogel: today.

Nadine Vogel: Um so let's go ahead and get started, so Ian you, I think you went into the Royal Navy you're like 18 - 19.

ian Wyllie: yeah that's right I entered before university it's a sailing [British term for managing a ship] that the Royal Navy has for relatively small numbers and then unfortunately I was injured in in the year, so I then.

ian Wyllie: Left and went to university studying mechanical engineering and human factors, so the sort of things that are got economists worry about and.

ian Wyllie: You know accident investigators.

ian Wyllie: Say recently i've been very unwell for maybe seven years as a secondary to that original injury and the Andrew Cassell Foundation has gotten me back out into the world and sailing independently, so I will be taking a boat around Britain in 2022 and 2023.

ian Wyllie: To support them and to kind of firm my own rehabilitation and sailing around Britain and Ireland although we are a very little island it's only about 1800 miles so in the States terms I know that's really not very far but it's.

ian Wyllie: When you go North from the top of Shetland you are further north than you would be South if you went around Cape Horn, so it it's quite challenging sailing and there's a large number of navigational hazards so it's quite a big sail for me and i'm sailing quite an old boat.

ian Wyllie: Because old boats are cheap and.

ian Wyllie: So it's going to be a lot of fun and it's a opportunity to share the story about what disability sailing can do with people's rehabilitation.

ian Wyllie: In marinas and yacht clubs around the UK and also to talk to yacht clubs and marinas about how they can improve access to the water for disabled people and in doing so, also improve access for the whole spectrum of.

ian Wyllie: waterside users.

Nadine Vogel: Right well so that was that was a lot right so let's.

ian Wyllie: Sorry.

Nadine Vogel: So let's unpack. No, no, no this is good.

Nadine Vogel: Let norma and I unpackage, some of it, so we can deep dive into a few things. so let's see you had your injury and that was what about seven years ago, or so.

ian Wyllie: No, no, no, my injury was now in 1997.

Nadine Vogel: Oh. okay.

ian Wyllie: But I did okay, for a number of years and then about seven years ago I I had some really serious complications and got very unwell and ended up in fact in what you in the states would call a skilled nursing facility.

Nadine Vogel: Yes.

ian Wyllie: Here we call it a nursing home, I think I prefer your term actually.

ian Wyllie: And so they they looked after me and and very slowly managed to get a more sort of stable package of management together.

ian Wyllie: And then.

ian Wyllie: Um that's.

ian Wyllie: How I. ended up.

Nadine Vogel: Well, let me just ask you this Ian, if I may just really basic. How does someone go from being in a skilled nursing facility for seven years.

ian Wyllie: Um hmm.

Nadine Vogel: After becoming disabled.

ian Wyllie: Um hmm.

Nadine Vogel: spinal cord injury to sailing and sailing I think you said solo.

ian Wyllie: Um hmm.

Nadine Vogel: I mean it's like there's gotta be a lot in between there.

ian Wyllie: Yeah there is quite a lot in between there.

ian Wyllie: Let me say. I knew that.

ian Wyllie: Access to the water was going to be really important to me and say before the corona virus pandemic I.

ian Wyllie: started swimming again, which is something that many disciple people can do and spinal cord injury doesn't stop you doing and I was quite debilitated at that point.

ian Wyllie: But I was able to find a club in Winchester who are primarily able bodied but the coaches were willing to run a session after the able bodied young people went swimming for disabled people and they spotted that I could swim, um swim properly, and so they very quickly.

ian Wyllie: sort of fast tracks my my coaching and, unfortunately, then the pandemic came along, so everything then shut down, especially for disabled people and.

ian Wyllie: Because we're in a nursing facility had to be really careful about not bringing the virus in and in infecting people who are much more vulnerable may in terms of respiratory illness.

ian Wyllie: So that was a bit frustrating and I started looking around for disability sailing organizations and I would characterize that there are quite a lot, I think there are quite a lot in the States looking on Facebook as well.

ian Wyllie: Many of them are are specific cause related so in in the UK we've got ones that specialize in teenage cancer or blindness or other specific disabilities and others are what I would call experience related, so there are.

ian Wyllie: charities, which are out there and their their interest, really is improving people's personal experience of life and their competence in the world, but not specifically it's it's not sailing sailing is just the modality, to get there.

ian Wyllie: But I knew I wanted to be involved in sailing and say after a lot of googling I found the Andrew Castle Foundation and Andrew Cassell had been a an active sailor and sailmaker in the.

ian Wyllie: In the world racing competitively before he ever started racing as a disabled person and went to the Paralympics and and the trust and the Foundation we're willing to give me a try and say I totaled over to cowes, indeed, with a support worker at that point.

ian Wyllie: And I was very uncertain where they'd be able to help because many organizations hadn't been and I found that.

ian Wyllie: They gave me a walk around the the boats they used a keel boats so sort of 23 feet and they saw where I could transfer and do all the sort of necessary things and I have to admit I was pretty inaccurate climbing around the boat that day.

ian Wyllie: And it took me a couple days to recover and and then we just took it from there in small steps so some days we'd go out and do nothing but tack and jibe 10 times and come home, and that was knackering for me.

ian Wyllie: But it got me back doing stuff and they saw the potential, and I saw the potential so and then um bought a yacht which was on on hard on the beach in not a very good state and spent.

ian Wyllie: Three or four months refitting her with some help, and that also was very good rehabilitation, because I learned to climb around the boat when she was nice and stable so in a sense, I was just using her as a physio gym.

ian Wyllie: And it, you know, in the states that rehabilitation, can be very, very expensive and you can probably put a dollar amount on it.

ian Wyllie: And in the in the UK, the issue is not so much the dollar amount, but actually getting hold of it because there isn't there isn't such a huge market here and therefore.

ian Wyllie: getting access to good rehabilitation is is difficult and so I thought I probably could have spent the same amount.

ian Wyllie: In a gardening rehabilitation project or at some similar and and have much less good results actually So although it's been quite expensive it's been a very good form of rehabilitation.

ian Wyllie: And the other thing I say about the Foundation, which I found really endearing and very helpful was that.

ian Wyllie: There are different modes of doing things with disability with with disabled people say you can do things to people.

ian Wyllie: and do things for people, or you can do things with people and the thing that i've experienced and it's not just surface level because i've now been involved for over a year, so i've seen it like a.

ian Wyllie: Like the Center of boiled sweet it's it's there throughout everything is that they are an organization that does things with you, and they want you to do things with them, rather than it being some sort of pat on the head operation.

Nadine Vogel: Right right well you know it's interesting to it, as you were talking about you know the rehabilitation your rehabilitation, but then how it's norma do you feel like it's like intertwined with the boats rehabilitation. Right.

NORMA STANLEY: Right.

Nadine Vogel: You know one one is is impacting the other, which I, which I think is really, really interesting and you know Norma and I have had many conversations just about health systems in general.

ian Wyllie: Um hmm.

Nadine Vogel: It really doesn't matter what country it is.

Nadine Vogel: And, and as much as our health systems are all here to help us and help rehabilitate us when when that's possible i'm not sure that they do it in a way that is as effective as what you're describing here that that you really took on and did for yourself in partnership with the Foundation.

ian Wyllie: I think that's a very interesting observation and that the problem is that it's not a controlled trial you can't control trial with one and perhaps on.

ian Wyllie: unusual person and perhaps my circumstances where unusual.

ian Wyllie: I think.

ian Wyllie: I think it's it's a very interesting idea that self directed rehabilitation as which I think is kind of what you're pointing out.

Nadine Vogel: Yes.

ian Wyllie: might be. The most effective thing, and there is some evidence that that might be the case and and for a while, in the UK there's been a move to rather than.

ian Wyllie: Settling people's. um.

ian Wyllie: Care arrangements remotely to actually providing them with cash amounts. uh to uh.

ian Wyllie: To source their own care and support, but there are some problems with that as well in that if people don't know what they need, then it can be quite difficult to support them.

ian Wyllie: Uh, I.

ian Wyllie: I think the important thing in this case was that there was a clear motivating factor not only about the desire to get better, in fact, the desire to get better or to get more able was rather secondary.

ian Wyllie: The desire to have a lot of fun and go sailing was much higher up.

ian Wyllie: And, and so, and so maybe maybe the thing that's missing in a lot of rehabilitation is is is that fun, I mean I recall speaking somewhere he'd had quite a bad outcome from.

ian Wyllie: A spinal cord injuries and rehabilitation post post injury immediately post injury and they now had quite poor function and they said well.

ian Wyllie: When I was in the gym all I did was sit on the mat and roll from side to side, because actually I didn't quite have the impetus to.

ian Wyllie: To do it anymore, that there was there was something there was some barrier there and I suppose you could characterize that as depression or lack of fun and and I think.

ian Wyllie: I think it was it was a really important thing that I could see the project working I.

ian Wyllie: can see this by recovering from being not quite wrecked but certainly not in a great state.

ian Wyllie: And leaking to being you know every.

ian Wyllie: week it was coming on and, yes, it is her own rehabilitation journey, you know that this Vancouver 27th from 1979 and the boat was originally designed by Canadian, hence the name Vancouver and and they they sailed one across the Atlantic and.

ian Wyllie: When it got to this end people went we'd like to build some.

[Laughter.]

ian Wyllie: Which.

ian Wyllie: One way of finding a market for a boat.

Nadine Vogel: Right, exactly.

ian Wyllie: and build something random.

ian Wyllie: Then, do something slightly outrageous with it and see what happens.

Nadine Vogel: Well it's interesting one of the things you said and norma you and I have talked about this.

NORMA STANLEY: Right.

Nadine Vogel: issue of mental health.

ian Wyllie: Um hmm.

Nadine Vogel: And, and you know you said about you know fun, there has to be a component, that you can get joy out of it.

ian Wyllie: Yeah.

Nadine Vogel: I've i've gone and selling trips.

Nadine Vogel: i've had a lot of fun, but boy that's a lot of work and I wasn't even doing, most of it so.

Nadine Vogel: there's a lot of work but I do think and i'd love to get your opinion on if you think that there's some correlation in some way with mental health, and I want to talk about different disabilities but just start with mental health and and what you're doing from a sailing perspective.

ian Wyllie: Yeah certainly so my mental health was really, really poor as part of the issues that happened and and then with being in nursing facility.

ian Wyllie: In fact, one of the issues was that I was getting very septic frequently and the antibiotics were kicking my brain into suicide cases and all sorts of other unpleasantness and in fact I still live with that to some extent, today, so I have to be quite careful. Um the question about. Um.

ian Wyllie: So. Just remind me about the question again.

Nadine Vogel: Yeah, it's just about Mental health.

Nadine Vogel: You know, because you said about the fun aspect of the rehab right rehab isn't always fun, but you found something that is your passion, you made it fun and how that can help with mental health related. disabilities.

ian Wyllie: Yes, I think I think mental health activities mental health.

ian Wyllie: Mental health advocates often talk about previously liked activities, they often talk about recovery in those terms, I think one of the difficulties with that is that.

ian Wyllie: People often are looking into shorter time span, so they say what books have you read in the last month that you enjoyed.

ian Wyllie: And you know why don't you now read something like that, when the problem with me was that those previously liked activities were but a shadow of what I really enjoyed.

ian Wyllie: And what I really wanted from the world and I knew that one of the things that I really valued was being out in wild places wilderness, as you would, I think characterize it.

ian Wyllie: Over in the States and we don't have such a wide network of national parks, but there are some parts of these islands which are pretty wild as there are of Europe.

ian Wyllie: And I knew that I valued something and got something from that, but because of the walking difficulties which, with which I have I realized I couldn't do it, I tried, but I couldn't do it practically and the joyful thing about boat for me is that it's your magic carpet.

ian Wyllie: The wild places come to you, whether you're out there on the ocean doing the really hard work and you're right sailing sailor is screamingly hard work and the first few times I did it in a year I was totally exhausted, when I berthed her and I thought wow what have I gotten myself into.

Nadine Vogel: Right, right.

ian Wyllie: As I as I, as I slowly built up longer.

ian Wyllie: And longer passages.

ian Wyllie: i've built my stamina and i've built an understanding of the boat and and and so on, and and there's that symbiosis which really helps.

ian Wyllie: So yes, I think.

ian Wyllie: I think that that joy is really important, now i'd like to say something else about mental health, and I think it's really important because it's got a general point to it.

ian Wyllie: When I left the Royal Navy, I was devastated and the water was quite a dangerous thing for me because, as I became more and more depressed I wondered whether.

ian Wyllie: I should make my end in the ocean.

ian Wyllie: I will put it in a more no more tightly than that for.

Nadine Vogel: People who might. Have traumas.

ian Wyllie: And so.

ian Wyllie: I wondered whether I would ever be able to safely sail again.

ian Wyllie: And what I found is that, yes, I can but I don't think I could have done in the depth of my illness or, indeed, shortly after I.

ian Wyllie: left the services so.

ian Wyllie: I wonder whether, in terms of mental health, rehabilitation, we sometimes look at the person who we see now.

ian Wyllie: And we think.

ian Wyllie: How could now be better and what we don't look at is the gymnast aged six or the horse rider age three all the.

ian Wyllie: poetry writing teenager and and we don't look back before the branch, which took our lives into a completely different dimension, our life that the branch before our major accident before we fell off a cliff.

ian Wyllie: Before you know, a head injury that's been devastating, when we don't look back beyond it, and say.

ian Wyllie: Who am I.

Nadine Vogel: Absolutely.

ian Wyllie: From a rehabilitation term and.

ian Wyllie: Who is the person in front of me really not.

ian Wyllie: Not the sort of shell of a.

ian Wyllie: person who i'm dealing with now.

ian Wyllie: But who is the essence of this. person.

Nadine Vogel: I think, I think that that's really important, because you know I mean norma you and I have experiences with our daughters, but.

Nadine Vogel: You know they'll they'll look at you or look at you know our daughters and determine what they think would be ideal right what they think we're happy not having a clue what life was like you know before and what our expectations are versus theirs.

Nadine Vogel: So on that note that we do have to take a.

Nadine Vogel: Commercial break so for our listeners don't go anywhere norma and, I will be right back with Ian Wyllie and having an amazing conversation, so see you in a few.

Voiceover: And now it's time for a commercial break.

Voiceover: And now back to our show.

Nadine Vogel: Hello Hello everyone and welcome back to today's episode of disabled lives matter I'm nadine vogel your co host along with norma stanley and we are interviewing Ian Wyllie and having this. fabulous.

Nadine Vogel: conversation about sailing, which I find to be incredibly fun and incredibly difficult.

NORMA STANLEY: Yes.

Nadine Vogel: norma i'm going to turn it over to you, I think you had some questions.

NORMA STANLEY: Well yeah I really would think of listeners would love to understand the accessibility component of sailing with disabilities and how they determine who is to do what to do it.

NORMA STANLEY: I think you had some points that you wanted to make about that, and which I think people need to know.

Nadine Vogel:Yeah and I want to add to that that to be you know this issue of sailing only you know people with disabilities separate because I know that you know you, you are also in competition.

Nadine Vogel: So is it like no Paralympic Games versus general Olympic Games during.

NORMA STANLEY: Right.

Nadine Vogel: Or is it that you have a disability or don't or is it intergrated.

ian Wyllie: SO there are parasailors who are classified in the same way that disabled athletes are they're not currently in the Paralympics sailing left Paralympics in 2018 and is considering whether it can be readmitted in 2028 or later.

ian Wyllie: Sailing, however, is a sport of many parts so much more than general team sports, there are people in every boat who have very particular skills, there are people who are tacticians people who are big fit muscular people who can stand out on the end of the bow in spray and fix stuff.

ian Wyllie: So actually it's a very good sport for a fully integrated approach to disability sports there are kind of three approaches to.

ian Wyllie: Disability sport there's the approach that disables everyone down to the same level by for example blindfolding everyone or there are sports, which are quite exclusionary say some.

ian Wyllie: Schools that play from a wheelchair or for wheelchair users only, and then there are sports like sailing where.

ian Wyllie: it's possible to integrate abled and disabled people, even in competitive teams, so we sail in the Andrew Cassell Foundation, we sail sonars which are very good boat for integrated sailing they're not the highest performance boat out there, but they're not slow.

ian Wyllie: And we frequently go racing in the open market, so to speak, of of club racing around the silent and in cowes week with boats that are 50% disabled 50% abled or.

ian Wyllie: Some some sort of balance around that that there might be circumstances where 100% disabled person boast when went out but it's really a matter of balancing the disabilities that are.

ian Wyllie: In play in each boat, so what someone who's blind can do and what someone he has only one hand you can do are slightly different, but each can play a really valuable role.

ian Wyllie: And even people with quite severe.

ian Wyllie: disabilities and in spinal terms quite high levels of disability or complex spasticity in.

ian Wyllie: CP cerebral palsy can have very active sailing lives through either hand controls or head controls or ultimately driving a boat with SIP and puff.

NORMA STANLEY: Wow.

ian Wyllie: That controls so, so there is there is a you know there is there is a really wide range of ability that can be integrated.

ian Wyllie: And there are boats that are specifically built to do that, and there are boats which happened to be general boats which can be very accessible.

ian Wyllie: You can do all sorts of things to help people with grip strength and to reduce the loads online, so that people can play a full an active part but, but ultimately sailing as a sport, about being at one with the wind and water and you need to feel.

ian Wyllie: And I know from having been in a nursing facility that.

ian Wyllie: feeling is something that goes very light in you know it's a very low level skill, if you like, and people know when they're uncomfortable and.

ian Wyllie: The inverse is that people know when they're comfortable and when you get a boat sailing well.

ian Wyllie: it's being comfortable and it's if you can keep people in that comfort and if you can keep people into the feelings that they're meant to be having on their face or on their hands or on their.

ian Wyllie: Bottom or or in their feet or wherever they can become good sailors it's people who can't concentrate on that feeling, however, basic that level of concentration, who are really going to struggle, but actually in my experience i've seen more able bodied people struggle than disabled people.

Nadine Vogel: Because it is big in the moment.

ian Wyllie: yeah it's big in the moment that would be the psychological term for it me psychologically, the best sailing happens when you've got full flow, you know that that that that complete being oneness with what's going on.

Nadine Vogel: Right. Well, I think, even norma and I think we've heard you know some like Paralympic athletes even tell us that right.

NORMA STANLEY: AbsolutelY.

Nadine Vogel: When they get in the zone.

ian Wyllie: yeah the zone yeah yeah.

Nadine Vogel: Oh. how beautiful.

ian Wyllie: yeah it is it's very cool.

Nadine Vogel: norma anything. else you want to.

NORMA STANLEY: How long. I was just wondering how long when you go out on these passages how long of a trip, is it, I mean are these hours of.

NORMA STANLEY: Time.

ian Wyllie: Okay.

NORMA STANLEY: Or days of time.

ian Wyllie: Okay.

ian Wyllie: So i'm not doing it non stop and i'm taking opportunities to stop and that is important because that's the sensible thing today and, in part because.

ian Wyllie: That gives me the opportunity to meet more people and talk more about what the Foundation is doing, and my story and how to improve accessibility.

ian Wyllie: And it's about if you go if you go around the race course which is raced every four years this year is one of them actually and the rule rule correlation racing club seven star around Britain and Ireland race is about 1800 miles.

ian Wyllie: So it's not it's not huge, but the waters can get quite extreme, and so I will actually probably sail quite a lot further than that because i'm kind of not just going around the outside, but i'm going around the wiggly bits.

ian Wyllie: So, in the first winter this this this year from the end of cowes week, which is in the first week of August I will sail South down the south coast of England to.

ian Wyllie: Plymouth and then around the lizard and out around the west of Ireland round top of Ireland and into Glasgow and from there i'll take.

ian Wyllie: The boat through a canal.

ian Wyllie: Not not a big canal like your I-C-W but a little town called the Caledonian canal that runs from Fort William to Inverness so it runs across the top of Scotland and and then i'll put the boat to bed for the winter and come back to Glasgow in the spring and then go around the top of.

ian Wyllie: The Hebrides and the Shetlands going around the the lighthouse there, which has the wonderful name of Muckle Flugga and and then i'll come down.

ian Wyllie: i'll come down the east coast of England in the east coast it's actually very challenging because it's got lots of shells and navigation is hard and there's not a lot of landmarks and now it's covered in wind farms so wind farms and sailing don't really go together very well.

NORMA STANLEY: Wind farms.

ian Wyllie: wind turbines.

NORMA STANLEY: Oh wow.

ian Wyllie: yeah renewable energy has been put into the North Sea on a big scale because it's a nice Shell AC and therefore you can generate lots of energy without too much expense.

Nadine Vogel: Well, I just have to say that i'm i'm in awe.

Nadine Vogel: Of everything that you have done and and and also there's the Andrew Cassell Foundation and just what they do and continue. To do I think it's.

NORMA STANLEY: Yes.

Nadine Vogel: it's really fabulous and I, you know it, one that's out of all the things that you've. said.

Nadine Vogel: spoken to us about during this podcast The one thing that it just really stands out for me is this, you know to, for, or with.

Nadine Vogel: It's all about the engagement with people with disabilities and I just think that's that's a really powerful message that that I would like to make sure our listeners get to hear.

NORMA STANLEY: Absolutely.

ian Wyllie: I think in closing the thing that I would like to say is that.

ian Wyllie: You have to take things, step by step, and you have to break them down into little bits so.

ian Wyllie: It all looks completely impossible, but when you start thinking okay so where can I stash a wheelchair wheelchair on this boat.

ian Wyllie: How could I do it when when I stay this stuff and then you think, but I need a power weird wheelchair and i'm sure for any sort of distance really so you think I can't put power wheelchair on this boat but maybe I can stash the power adapter for a wheelchair somewhere. in the boat.

ian Wyllie: And you kind of start taking it apart like that, and you look at the biomechanical challenges of it as well and.

ian Wyllie: don't be afraid to remember that you're doing it with people, as you say, and see journals for advice, now they might not know about your disability people might not know about your disability or outside the health sector, but people.

ian Wyllie: can help you if you help them to understand your issues, they can help you whether their health sector or not, and sometimes I think the people outside the health sector are much more open, because they don't have this sort of huge risk management.

ian Wyllie: envelope that they're trying to live within.

Nadine Vogel: Preconceived. assumptions.

ian Wyllie: Yeah.

Nadine Vogel: No absolutely well, Ian thank you so very much for joining us today and during your evening I appreciate you taking the time Norma this is fabulous isn't it.

NORMA STANLEY: Yeah I would love to see you do what you do sometime.

Nadine Vogel: I know right.

ian Wyllie: You can find me on all the usual social media channels at Sailing Trilleen that's two L's to E's.

ian Wyllie: And i'm on instagram and I am on YouTube in a very small way, but if more people want to follow me i'd be absolutely delighted.

Nadine Vogel: Sounds good.

Nadine Vogel: I certainly, think they will, after this interview so thank you once again and thank you, norma as always.

NORMA STANLEY: Thank you.

Nadine Vogel: A great co host and to our listeners, I hope you enjoyed this episode of disabled lives matter as much as we did, and we look forward to seeing you on another episode. bye bye everybody.

NORMA STANLEY: bye bye be Blessed.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Season 02, Episode 04 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Andrew Cassell and Matt Grier

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the Disabled Lives Matter Podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley!

Nadine Vogel: Hello everyone and welcome to today's edition of disabled lives matter i'm the nadine vogel and I am your co host along with norma stanley hey norma.

NORMA STANLEY: hey how's everybody doing.

Nadine Vogel: Good good we are really excited because we are joined today by Andy Cassell and Andy you have had an amazing an amazing career, you have done just so many things and all around sailing.

Nadine Vogel: And in doing this, as someone with a disability so i'm wondering if you can start us off by just telling us a little bit about your background and how disability, you know kind of comes into this.

Andy: Well, as far as i'm concerned I was born, without any legs.

Andy: Well, I say.

Andy: There were partial legs there were a couple of bits in the womb and.

Andy: I lived on the farm i love the countryside and love everything about it, we live right near the beach, so I had access to the beach so as soon as I could I went swimming.

Andy: and

Andy: My grandma bought me a metal boat.

Andy: Which.

Andy: You rowed it wasn't wasn't a sailing boat, it was just a rowboat and I used to well, first of all I built the kon-tiki expedition log raft.

Andy: Kon-Tiki and I was so upset when it sank when I got on it.

Nadine Vogel: [laughter.] With you on it.

Andy: My grandmother bought me the other boat and I was tied on a piece of rope a 60 foot piece of rope by my mother and i've actually cut the rope.

Andy: disappeared so she she was not very pleased about that.

Andy: But I eventually put a uh.

Andy: My granny and I put a sign on it, a tablecloth.

Nadine Vogel: Wow.

Andy: And a telescopic mast, which you pushed up.

Andy: and put it in a slot in the tool across the middle.

Andy: And I sailed that quite a lot, but only down wind.

Nadine Vogel: Okay, I was going to say, who knew a tablecloth can have that many [laughter.] uses.

Andy: I wouldn't go up wind. [laughter.] Well nevermind.

Andy: Any way, then I got into my granny was so impressed with my sailing that she bought me a 12 foot wooden dinghy.

Nadine Vogel: Okay.

Andy: Where I sailed in local regattas and won quite a few.

Andy: and

Andy: carried on like that, for a few years.

Andy: And then she was also impressed with my further progress.

Andy: and bought me an albacore dinghy 15. 15 foot albacore dinghy.

Nadine Vogel: Yay grandma.

NORMA STANLEY: Yeah

Andy: I won the.

Andy: The albacore championships, the only person ever to do so with a two artificial leg, because you have to sit out over the side and quite often you fall out of your legs it's quite it's not fun really.

Nadine Vogel: Right, right.

Andy: Especially, if you are a critical part of the race.

Andy: [Laughter.] But anyway, I won the championships and went on to sail on full sailboats.

Nadine Vogel: Well, so I mean, I know that you have won medals in the Paralympic Games, but my understanding is that you have chosen, more often than not to sail side by side with able bodied individuals so talk to us a little bit about that.

Andy: Well, always I disliked actually joining in, which is an awful thing to say.

Andy: With disabled sailors.

Andy: Because they were so bad.

[Laughter.]

NORMA STANLEY: Oh dear.

Andy: I hate to say that, but they were. [Laughter.]

Andy: And therefore I just sailed against able bodied people, and I was determined to do that right throughout my sailing career.

Andy: And I didn't come across many disabled people until laterally.

Andy: A few para Olympian olympians.

Andy: Entered a crew for me and I got mixed up with disabled and then for the Cassell Foundation, which was a charity for disabled racing.

Nadine Vogel: mm hmm So what do you think was the the impetus that drive for doing this, I mean you've it sounds like you've been driven from day one, so what is what what is it behind that.

Andy: um it's just about self self determination.

Nadine Vogel: Okay.

Andy: To actually win I always had to win that that was a terrible obsession. I'm afraid.

Nadine Vogel: I think that's pretty good for an obsession.

Andy: It carries you through.

Nadine Vogel: Right.

Andy: Helps you helps you through.

Nadine Vogel: Right well you know we were having a conversation with someone recently about you know health care.

Nadine Vogel: and rehabilitation and that, although you know clinicians mean well and want to help with rehabilitation that often it's your own self determination and your own will and passion for doing what you love that really is the best rehabilitation. um what are your thoughts about that.

Andy: yeah I totally agree that's exactly what it is yeah.

Nadine Vogel: yeah I would think so.

Andy: It keeps you going.

Andy: And you and you change as a person, you become from more more more disable to less disable and then almost pretty pretty good really, until you get my age, now, which is nearly 80.

Andy: And i'm very.

Andy: going backwards now.

[Laughter.]

Andy: But you can't help that that's life I'm afraid.

Nadine Vogel: Yes, I now.

Nadine Vogel: Well, how have you been. um

Nadine Vogel: welcomed, I guess, I would say, by the able bodied sailing Community have you been challenges just from that side of things.

Andy: um, they always thought it was fascinating that is chap came along and beat them up.

[Laughter.]

Andy: And they were usually pretty good you know.

Nadine Vogel: um, hmm.

Andy: So that was. I always thought that I was really liked.

Nadine Vogel: Right.

Andy: Really beating the able bodied.

Andy: topsiders.

Nadine Vogel: Absolutely, absolutely. So, although I mean I want to ask about you know the Paralympics and Paralympic Games, but it sounds like you know if you could have competed in the typical Olympics, you would have preferred that.

Andy: Oh i'm afraid so. yes.

Nadine Vogel: [Laughter.] Oh well that's not a bad thing. I don't know that's a bad thing I you know there's a.

Nadine Vogel: there's like a movement of people, even today i've heard norma, I don't know if you heard about it, but you know individuals with disabilities saying why can't I compete in the typical Olympics I don't know if you. have any thoughts on that Andy.

Andy: yeah I mean, I think I think they have to look at it very closely.

Andy: Before they.

Andy: Do head to head.

Andy: Because.

Andy: When you sail among the able bodied you realize how good they are.

Nadine Vogel: Right.

Andy: physically.

Nadine Vogel: Right.

Andy: And also, they they they know they can they can do it, you know, whereas if you are disabled, well, you, you have doubts and things like that which you have to overcome.

Nadine Vogel: Right. right.

NORMA STANLEY: A lot of it comes down to the will.

Andy: The will oh absolutely absolutely yeah yeah it's great fun as well.

Nadine Vogel: Yeah. I bet.

[Laughter.]

Nadine Vogel: I've I've. you know i've been on sailing trips and I know how incredibly difficult that is.

Nadine Vogel: So I just I can't imagine doing that and not having all of my limbs and all of that, you know it's it's very difficult to imagine.

Andy: Hmm. What, I think, also the able bodied appreciate you being up there.

Nadine Vogel: Yes.

NORMA STANLEY: Absolutely.

Andy: They do appreciate the.

Andy: fact that you try.

Andy: And sometimes beaten um I served in the dragon force for many years, the International dragon, which is about 32 foot 30 foot 30 foot so lucky that I.

Andy: get it right.

[Laughter.]

Andy: They are lovely boats three man boats.

Nadine Vogel: Okay.

Andy: And they have a big, you know, a spinnaker.

Andy: runners and they're very powerful they're terrific boats I love them and.

Andy: I think I think that's one of my favorite boats.

Nadine Vogel: Really?

Andy: yeah yeah.

Nadine Vogel: Well, you know.

Andy: I do, like I do like the sonar.

Nadine Vogel: Yes.

Andy: It's perfect and all that, but it's not quite got what the dragon's got.

Nadine Vogel: [Laughter.] You know, it is interesting because i'm thinking norma you know if you have, if you have individuals who are able bodied and they see Andy and see what he's doing that that probably motivates them even more to you know to say wait a second if he can be doing this, I can be doing this right.

Andy: Absolutely.

NORMA STANLEY: They can be doing it all that's going to be giving you drive to become even more so.

Nadine Vogel: Right.

Andy: Absolutely.

Nadine Vogel: Let's let's do this let's go on a short commercial break and when we come back, I really want to talk about the Foundation.

Nadine Vogel: That that you founded the purpose what it does so let's do that let's take just a two minute break for our listeners don't go away, we will be right back with Andy Cassell and my co host Norma Stanley.

Voiceover: And now it's time for a commercial break.

Voiceover: And now back to our show.

Nadine Vogel: Hello everyone, this is nadine vogel bringing you back with my co host norma stanley for disabled lives matter.

Nadine Vogel: This is more than a podcast, as you all know, this is a movement and Andy Cassell is joining us today to help us deliver on that movement and talk about why people with disabilities do matter.

Nadine Vogel: So Andy welcome back um before we went on break I said I wanted to talk about the foundation that you started, but before we do that, I wonder if you could tell us a little bit about your career at Ratsey & Lapthorn sail makers.

Andy: Well, when I left school.

Andy: I was one way behind with my career as a.

Andy: Child child, you know.

Andy: In school.

Andy: So I decided to.

Andy: Go and join a sale maker, because I was so mad about boats, but I didn't care what it was to do it, but if it has to do with sail making and it connected with boats that's all I was worried about.

Nadine Vogel: Okay.

Andy: S0, I joined us very, very small, sail making company and.

Andy: I crawled around on the floor, for I think 14 years.

Andy: cutting sails out wearing a whole within my knees in my trousers.

Nadine Vogel. hmm. wow.

Andy: But I loved it and it got me through, and then I be I got an offer of a job at Ratsey & Lapthorn.

Andy: which I took. and.

Andy: I became a director and i've been there ever since.

Nadine Vogel: Oh okay okay, and I presume those sails were no longer being made.

Nadine Vogel: Out of tablecloths.

[Laughter.]

Andy: I'm afraid, not there.

Andy: Thank goodness. Thank Goodness.

[Laughter.]

Nadine Vogel: Just checking.

Andy: Well, some people would like to think they are.

[Laughter.]

Nadine Vogel: Well, so tell us, in this career and in competition, and all this, so now you found time to create to establish the Andy Cassell foundation and talk to us about.

Nadine Vogel: You know what it does, I mean I, my understanding is that it supports individuals with disabilities, with mental health conditions with long term illness, to take part in yacht racing and cruising.

Nadine Vogel: And that, in doing that you do integrate people with disabilities and abled bodied individuals but but tell us a little bit more about you know what what got you to this point that you wanted to create that foundation and talk to us about how it's going today.

Andy: Well, it got me.

Andy: motivated because I didn't have many opportunities given to me in sailling, because of my disability.

Andy: Therefore, I thought I'd create my own, which is really. the only way to do it. isn't it.

Nadine Vogel: Yeah.

Andy: I think, Matt ought to tell you what we do now, which is gone forward really from where we were when we started.

Nadine Vogel: Okay, absolutely. So joining us matt you want to introduce yourself.

Matt Grier: Hi yeah my name is matt grier i'm met andy actually back in 2011 when I used to look after development of paralympic sailing for our governing body.

Matt Grier: And we both teamed up I fell in love with that and his passion to with the way of his pathway is very similar to me as a child, even though i'm able bodied.

Matt Grier: And in 2017 he kind of handed me the reins and my passion is is to to keep it going from where we set it up back in 96.

Matt Grier: Which is trying to give other disabled people, the same opportunities, he had because that all seemed about the connections of social meeting people when you meet people you get those opportunities.

Matt Grier: But often people are too shy to talk to someone with a disability or ask the right questions so we're trying to create the environment so that's possible.

Nadine Vogel: Well that's that's great now you all, you know it's not just about the sailing itself and the competition, my understanding is that you'll help with fittings you know for the equipment that's needed on the boat is that is that accurate.

Matt Grier: yeah we're we're very lucky with the sonar class and the history of Paralympic sailing that that is probably one of the most.

Matt Grier: Equal sports that are out now, you can create an adaptation to make to help the person enable them to do the role.

Matt Grier: Which doesn't give them a performance benefit because at the end of the day, it's about the hull and the sails, so the adaptation is the ability to coil the rope, move from side to side.

Matt Grier: Those kind of things, so a lot of it is about that support network working out what people can and can't do and enabling them where we can on and off the water.

Nadine Vogel: Right, and I think again this this mission is.

Nadine Vogel: This work that you do to bring disabled and able bodied sailors together it's still a big focus Is that correct.

Matt Grier: yeah the social is actually a huge part of our sport that people quite miss quite a lot so when you look at any sport, with a clubhouse it's about you know it doesn't have to be an alcoholic drink you've. got.

Nadine Vogel: But it would help.

Matt Grier: Yes. But that chat about what happened on the race course afterwards is a huge part of the learning curve for people.

Matt Grier: And by bringing everyone in the same room it removes disabled element of it, for example, lots of people sit on a chair next to someone in a wheelchair you no longer spot the wheelchair you're just having a conversation.

Andy: that's exactly right.

Nadine Vogel: that's so important, and I think that that parlays into so many other aspects of life right or when it comes to.

Nadine Vogel: disability and one of the terms that we use is mainstreaming disability or seamlessly integrating so like you said you don't notice.

Nadine Vogel: You know it's not about the wheelchair, whether it's there it's not just two individuals having a conversation. now when when folks first come to come to the Foundation.

Nadine Vogel: What kind of skill sets do they have versus what the Foundation is helping to build um yeah so these folks become amazing you know sailing racers.

Matt Grier: yeah at the end of the day, it's all about confidence it's all about building people's confidence and then knowledge could obviously learning a sport can be like learning another language which I was always terrible at.

Matt Grier: But there's new terminology, everything is called different sometimes different people call things different names as well, which which makes things more complicated.

Matt Grier: But they can often come with zero experience just always wanted to get on the water.

Matt Grier: But sometimes also nervous because of their disability, so the key thing is, is to they're often not with you, so a phone conversation on a phone getting to know each other.

Matt Grier: Will often create a trial day if needed, and just so that we can get to know them as much as they can learn.

Matt Grier: To see is this something they want to do and they're going to enjoy because there might be slightly nervous of being on the water.

Matt Grier: And it's about building that confidence and relationship, the same as if you can imagine, think of Andy and the Paralympics the three people in the boat together.

Matt Grier: They have to have a unison between them. They have to be able to get on they can't have Andy pull the rope from the front of the boat and steer her from the back at the same time.

Nadine Vogel: That would be pretty impressive. [Laughter.]

Matt Grier: Exactly.

Andy: I've tried.

Nadine Vogel: See if he can work on that. Okay.

Andy: I've tried. [Laughter.]

Nadine Vogel: Well, you know if I mean i'm sure there's so many aspects of the Foundation that are that are rewarding right that that reinforce why you do this is there the one or two that they just stand out for you.

Nadine Vogel: This is.

Andy: The thing, there is one I have is somebody.

Andy: volunteer to join me as a crew of the front he's paralyzed from the waist down he fell off a roof at 11 and became paralyzed but he's lucky to live in a family that have quite a lot of money so they're able to support him, but he joined the company and he's now very much part of their company.

Nadine Vogel: um. hmm.

Andy: But anyways you go back to the sailing, but Brian.

Andy: is amazing really only he's paralyzed but he he scuffles along the edges of the pontoon and then literally rolls into the boat with any help.

Nadine Vogel: That sounds like me and I am able bodied. [Laughter.]

Andy: Exactly.

[Laughter.]

Andy: But he is totally amazing he's fearless.

Nadine Vogel: Right.

Andy: And he's been a brilliant crew for me and he's usually a poor bloke he has to.

Andy: has to sit at the front and get all the water.

Andy: before anyone else we came second in the World Championships in.

Andy: In the USA.

Andy: few years ago and it was really windy and he was he got absolutely soaked.

Nadine Vogel: And he loved it.

Andy: Every day, but he loved it he loved it.

Matt Grier: I think.

Matt Grier: something to add those it for me and listening to these stories aren't how confident, they all are, but they build the social groups around them, to help them support them with the boats and the equipment, the things that they actually can't do I get it in and out of the water.

Nadine Vogel: Right.

Matt Grier: And I mean going back to when I first started paralympic coaching in 2007 I didn't think was a doorway wide enough was there a step.

Matt Grier: You know how does How do people get around and that education for me came through doing it and meeting disabled people.

Matt Grier: And having the opportunity to learn in that way, and you know it's so great to watch the confidence of these guys and to use them as role models, which is why i'm pushing Andy all the time to still be as involved as much as he can not that I need to.

Matt Grier: That creating those opportunities and helping able bodied people learn about what his actual barrier for someone because they're quite easy to remove them a lot of the time.

Matt Grier: But if you're going to redo a building just making sure you put the right things in place from day one, instead of dropping down the line.

Nadine Vogel: Right retrofitting later, which is more costly and. so forth.

Matt Grier: Yeah.

Nadine Vogel: So.

Nadine Vogel: Well, let me ask you this, I mean are there are there are organizations like the Andrew Cassell foundation in other countries where individuals who have the same interests and disabilities can can also get involved and or do we send, everyone around the world to you.

[Laughter].

Nadine Vogel: Which is fine. [Laughter].

Andy: You just said the few.

[Laughter].

Matt Grier: yeah there is a few I mean you've got one Shake-A-Leg out in Miami that do a very similar thing I can't remember the name of top my head there's one in Brazil.

Matt Grier: But then there's also another really good group out in Israel, but they mainly focus on into Service Members with ptsd the real challenge is there's a lot of organizations that focus on something like visual impairments only or another type.

Nadine Vogel: Yeah.

Matt Grier: And they're all doing a fantastic job, the same as Sailability around the world is doing a great job, but that is very much also getting people on the water, whereas what we're trying to do is give them the independence to be on the water.

Nadine Vogel: Right right and and that's a big difference right isn't it is they're saying you know.

Nadine Vogel: Do I do I fish for someone if someone's hungry do I fish for them or do I teach them how to fish or something like that right, this sounds very much like that um so so tell tell our audience how they get in touch with you.

Matt Grier: Very simply on the Internet www.ACFsailing.org and you'll see now we've got a contact form and phone number feel free just to do that and we'll make the rest of the contact.

Nadine Vogel: Well, that sounds amazing norma anything that you want to add or ask.

NORMA STANLEY: Nothing I truly had no idea that so many people were sailing who may have had disabilities, I think it's a beautiful thing and so thank you for sharing all of that information, and I would love to be able to come be on the boat with you guys some. Time.

Nadine Vogel: [Laughter.] I know me too.

Nadine Vogel: Yeah just let us know when and where.

NORMA STANLEY: Yeah my daughter is a wheelchair user, she would love that.

Andy: Get yourself a ticket.

Nadine Vogel: There you go.

NORMAT STANDLEY: I'm on it.

Nadine Vogel: Well guys. Thank you so very much for taking the time to speak with us, I know our listeners are so grateful and have learned as much as we have, and I suspect you're going to get some contacts out of this.

Nadine Vogel: So again, thank you both for joining us and for our audience, thank you for once again joining disabled lives matter more than a podcast it's a movement, this is nadine vogel with our co host. norma stanley.

NORMA STANLEY: God bless.

Andy. Thank you.

NORMA STANLEY: Thank you so much, and we look forward to talking with you again soon.

Nadine Vogel: Absolutely bye bye everybody.

Andy: Nice to meet you. bye bye bye.

Matt Grier: Bye.

NORMA STANLEY: Bye.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Season 02, Episode 03 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Dr. Heron Werner

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the Disabled Lives Matter Podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley!

Nadine Vogel: Hello everyone, this is nadine vogel and I want to welcome you as co-host of disabled lives matter we are more than just a podcast we are a movement, and today I am joined by the fabulous norma stanley.

NORMA STANLEY: Hello everyone.

Nadine Vogel: My co host in crime partner in crime.

[laughter.]

Nadine Vogel: And we are just delighted today to bring you Dr Werner Dr Werner is a specialist in fetal medicine ultrasound obstet obstetrics and gynecology not that easy to say.

Nadine Vogel: Dr Werner welcome.

Heron Werner: Thank you i'm very happy to be with you.

Nadine Vogel: Thank you so tell our audience where you're practicing today primarily.

Heron Werner: Yes, I live in Rio de Janeiro Brazil so i'm physician here work more with the fetal imaging ultrasound and also Magnetic Resonance Imaging. In special case.

Heron Werner: I I had been here in Rio for. 30 years.

NORMA STANLEY: oh wow.

Nadine Vogel: So thank you, I you know it's interesting because when when we heard about you and your work and your background we were just so excited to speak with you. um.

Nadine Vogel: And I think our audience is going to be really surprised I didn't even know these things existed, but you came up with an idea an invention to make 3D models. Of fetuses.

Nadine Vogel: but so if that's not amazing enough right i've heard a 3D lots of things, but not of fetuses, but you decided to do specifically for your patients who are blind so, can you tell me first, tell our audience just how did that idea even come to you.

Heron Werner: Yeah. um. I love very much human fetal imaging and I remember.

Heron Werner: When I was in my first practice I lived in France for three years and I remember there we received one time a patient a blind patient.

Heron Werner: And in that time we didn't have a 3D ultrasound 3D images for diagnosis, so we, I saw something very interesting because we did the profile of the fetus in the ultrasound.

Heron Werner: And with a scissor we cut the profile to the patient to feel the profile of the fetus, so I saw that it's very interesting.

Heron Werner: So the years past in the 90s, we start to have the 3D ultrasound there in the beginning, if 3D ultrasound was not very powerful it was difficult to prepare the images, the quality of the images were not.

Heron Werner: Very good, it was not very good.

Heron Werner: But in at the end of 90s, the ultrasound start to be the 3D ultrasound we start to be powerful and then we can improve a lot, the quality of the images so my experience it will increase it with the 3D ultrasound and.

Heron Werner: In the beginning of the year 2000.

Heron Werner: I received the clinical proposal.

Heron Werner: From the people from the National Museum in Rio de Janeiro.

Heron Werner: To to work with them with the fossils.

Heron Werner: Within computed tomography.

Heron Werner: What they would like.

Heron Werner: to do is to prepare the the rocks they have the rocks.

Heron Werner: With the fossils inside with do the CT scan and then by.

Heron Werner: Using 3D printers you can print, what do you see inside.

Heron Werner: The rocks.

Heron Werner: It was a very, very.

Heron Werner: Good experience, so we start to work together and we have the four we we did a group of four institutions here in Rio de Janeiro, which is Gávea university, Catholic University of Rio de Janeiro, the National Institute of Technology and also the National Museum of Rio.

Nadine Vogel: Wow.

Heron Werner: So, and this was the first project, so our first this experience in 3D I have my experience in 3D ultrasound.

Nadine Vogel: Right.

Heron Werner: But the experience of 3D printing what we start in this time at this time we so we use the non invasive technology in paleontology.

Heron Werner: Where we're different blocks of material containing fossilized the vertebrates from the museum, we can extract the rocks in do the 3D printing of the fossils so they they weren't very excited with these in they asked why not.

Heron Werner: They asked us in the clinic, why not we continue this with the Egyptian collection, because we have Egyptian collection in the museum, so we did the also the the.

Heron Werner: Egyptian collection use the mummified the human bodies in also animals, so, if I can see the.

Heron Werner: The bones of the vertebrates inside the rocks if I can see the mummies inside the coffin, why not again not I can produce the 3D the print of the fetus inside the the womb so then we start to do the we start our third project was with to call the Fetus 3D project and.

Heron Werner: The problem in that time was around.

Heron Werner: 2005 the quality of ultrasound to do all of this kind of 3D printing was very, very bad So the first experiences we started to study with the fetus with bones more malformations that we used to do a CT scan at the end of the pregnancy with low dose dose of.

Heron Werner: Radiation very low dose.

Heron Werner: to study the complex mal malformation bones more malformations and that with this we could do the 3D printing of the bones and help the specialists to identify the pathologies.

Nadine Vogel: Wow, that's amazing.

Heron Werner: So ah. Yeah.

Heron Werner: Then we we started to talk with the the company's of ultrasound and M-R-I, because when you feed babies is ultrasound.

Heron Werner: To diagnose to start to prepare the protocols for use these in 3D printing so we got it in ultrasound and MRI Magnetic Resonance Imaging.

Heron Werner: In the initial idea was of reconstruction, the 3D printing of the fetus from ultrasound or MRI to assist medical students in the study of complex malformations in university.

Heron Werner: And also these models could also facilitate a multidisciplinary magical discussion, for example, involved with Neonatologist, geneticists, pediatric.

Heron Werner: resurgence in also radiologists did all of them discuss in those kind in this kind of images the diagnosis incoming complex pathologies, including pre and postnatal surgical planning.

Heron Werner: For the fetus or post natal in the babies.

Nadine Vogel: Wow, that's amazing.

Heron Werner: So the quality, year after year is start to be better and better and then you think I remember the case, we did in France when I cut the fetus of the profile of the fetus and we say.

Heron Werner: Why, we cannot use also for prenatal care in in blind patients, yes, so I close to my house here in Rio, I have the Institute for blind people.

Heron Werner: it's a big institute here in Rio went there with my friends and I say so, we like to to start and then another experience in see how the patients feel the pregnant patients blind patients feel during the ultrasound if they can touch the fetus.

Nadine Vogel. Yeah,

Heron Werner: So.

Heron Werner: Then they.

Heron Werner: They say it's a good idea I wait to four weeks, months and more than one year, but one day a patient call.

Heron Werner: from there.

Heron Werner: and say i'm pregnant.

Heron Werner: They talk about to you, I like to have this experience and then we did the ultrasound and it work and that time was difficult to work with the images, because it takes the the the quality of the software to prepare the human.

Nadine Vogel: was not.

Heron Werner: Good so usually we take more than 10 hours to prepare the. images.

Nadine Vogel: Oh my God.

Heron Werner: But we did that in the day, the first experience was wonderful very, very.

Nadine Vogel: So what I find so interesting and normal you know as I'm listening to this right, then.

NORMA STANLEY: Yeah.

Nadine Vogel: So we have a doctor who specializes in fetal medicine that starts out by looking at and doing this in rocks.

NORMA STANLEY: Right.

Nadine Vogel: We have a doctor working with a museum and i'm thinking okay that that's a little odd right we go from rocks to but the journey, I guess, I would say that you have taken.

Nadine Vogel: You know, talk about out of the box talk about not necessarily connecting those dots but then when you talk about that last stage before you went to do this for for women who are blind.

Nadine Vogel: But about diagnosing and preparing you know my daughter was born significantly contracted all over her body, and you know, had we had that kind of imaging before.

Nadine Vogel: yeah we had those 3D models and I think that a number of things could have been.

Nadine Vogel: We could have prepared better.

NORMA STANLEY: yeah.

Nadine Vogel: And and procedures and so forth, so you know i'm taking this from a very personal note, as well, but but to hear you know.

Nadine Vogel: i'm just smiling because I can just imagine there's someone who can't see their baby right and can't look at that screen to be able to feel that and get a sense I I just that has to be just mind blowing.

Heron Werner: But it's incredible when I saw the first time they become up from the 3D printer I say it's unbelieveable when I showed them.

Heron Werner: In the Congress and the people saw in the first time that's incredible.

Nadine Vogel: Wow.

Heron Werner: It was. very funny to see the the face of the doctors.

Heron Werner: watching that.

Nadine Vogel: Right. right. and to just because if you think about it, how else would a woman who is blind.

Nadine Vogel: Have any idea of how that baby is forming or you know even just through description, obviously, but, but I just love this, so this is fascinating, but we need to take a very short break and then, when we come back Dr Werner, Norma and I have all kinds of questions for you.

Heron Werner: All right

Nadine Vogel: So any to our listeners don't go anywhere, we will be back in just a minute with Dr. Werner moving from.

Nadine Vogel: rocks to babies.

Nadine Vogel: All right, we'll be right.

Voiceover: And now it's time for a commercial break.

Voiceover: And now back to our show.

Nadine Vogel: Well Hello everybody, this is nadine vogel joined by my co host norma stanley of the podcast disabled lives matter.

NORMA STANLEY: Well hello.

Nadine Vogel: And today we're talking to a doctor Werner this incredible emotional story, but it's not just a story it's it's real life and it's Dr Werner it's you creating these 3D models of.

Nadine Vogel: women's fetuses and when they're blind that's, the only way they can get a sense of right and and see but I, you know, I have to tell you.

Nadine Vogel: You know, for our listeners on break Dr Werner was showing us a sample of a baby's face a 3D image and you know, I was thinking, even though Norma you and I can look at the ultrasound right and.

NORMA STANLEY: Right.

Nadine Vogel: right but i'm sitting here thinking Oh, but that's so much more powerful.

Nadine Vogel: Then seeing on a flat screen right.

NORMA STANLEY: Yes.

Nadine Vogel: Wow. So let me ask you this, Dr. Werner how many how many patients, how many patients, you know, pregnant women who are blind have benefited so far.

Heron Werner: So a to now 23 blind pregnant women.

Heron Werner: 18 of them, their husband was also blind they meet each other in the school they told me, and most of many of them to work together and.

Heron Werner: So we have one in one case the woman was Okay, but the father was blind and the other case the husband was blind.

Heron Werner: One case.

Heron Werner: In the other case just a woman blind.

Nadine Vogel: And in what is the cost and you said 23 women that that's the only just since 2017 I think right so it's only really in a fairly short period of time that you're doing this, but are there is there a financial cost to these to these couples.

Heron Werner: No, no, there is no financial cost.

Nadine Vogel: Really.

Heron Werner: Because we have a program here, we pay for, for we we have a lab in which we talked that this must be free for them, so if the the the couple if they are in Rio de Janeiro area, we were you, we are based.

Heron Werner: There is no cost.

Heron Werner: Even the ultrasound so the ultrasound examinations free and also the 3D printed model is free.

Heron Werner: But if they live far from Rio.

Heron Werner: In another state or if they are outside of the country, so I asked them to send me the file from the ultrasound.

Nadine Vogel: Okay.

Heron Werner: Sometimes the doctors they're called me to to.

Heron Werner: To explain them how should they manage the block the 3D file sent to me, and you sent to the patient without cost any cost so it's a program it's it's free yeah.

Nadine Vogel: Now is this free outside of your country like you know, is it first of all, I guess, I should ask the question are there other institutions doing this in other countries around the world, one and then two if they are, are they also providing it for free.

Heron Werner: i'm not sure.

Heron Werner: I don't think so yeah we you here is free, but I think around the world they they they pay I think.

Nadine Vogel: yeah I would I would imagine if you did this in the states.

Nadine Vogel: We definitely pay.

Heron Werner: Yeah, yeah.

Nadine Vogel: i'm sure we pay a lot for it, and so, how many of these images in 3D images does a couple receive throughout that nine month period.

Heron Werner: We will do the ultrasound so the ultrasound we describe they all the images with talk too much with the patient talk a lot describing how is the fetus the position, and then we choose the best image and then we print. the best.

Nadine Vogel: And how many times do you like how many images will they end up having over the course of the pregnancy.

Heron Werner: How many exams so usually here we have three exams during pregnancy, first, second and third.

Heron Werner: trimester in the first trimester is around 12 week of gestation, the second trimester between 20 to 22 weeks, and the third trimester between 28 to 32 weeks of gestation.

Nadine Vogel: now let me ask you this, because obviously this program is funded for women who are blind or husbands, who are blind.

Nadine Vogel: But what happens if you're conducting an ultrasound and you can see, there is something wrong with the fetus right there's there's some clinical issues um would you then also do still use the 3D images for that.

Heron Werner: Yeah. This is this same one one important point in 3D images in 3D printed images in specially for blind patients, if you find them in some kind of malformation especially out external malformation like. cleft lip for example.

Nadine Vogel: Yeah.

Heron Werner: We can explain better the couple.

Heron Werner: What what is the malformation.

Heron Werner: You know, because the people who can see you can explain the TV in the monitor the machine, but for the blind, when they have to visualize.

Nadine Vogel: Yeah.

Heron Werner: They have what's the problem, even when they touch the problem in we have we had one case with problem.

Heron Werner: All of out of these.

Heron Werner: 20-23 patients and we have one case we.

Nadine Vogel: face malform malformation.

Heron Werner: We can describe we can discuss and explain better when you have the 3D model.

Nadine Vogel: When I would think to if there is an anomaly, that is, that great even from someone who can see it on screen.

Heron Werner: Yeah.

Nadine Vogel: Sometimes it's it's it's still very difficult to imagine what that really looks like or what that means and i'm just thinking from a very personal perspective, so I I appreciate this is very much on how long after the exam does the do the couple get the copy of the of the image.

Heron Werner: If they are based in Rio what we do, we do the ultrasound in special case we do MRI but.

Heron Werner: We do the ultrasound we explain everything some some most of the time it takes around five to seven hours to prepare the model.

Heron Werner: So I asked the patients go back home and I asked them to come back the next day or 48 hours, depends of the schedule and then we would do the ultrasound again explaining and then they can touch the image.

Nadine Vogel: i'm just saying in awe. norma do you have some questions I'm.

NORMA STANLEY: I was wondering, is it is this a service that.

NORMA STANLEY: can be offered to typical parents too, or is it specifically for you knoq, because I think that they would be. interested.

Heron Werner: Yeah we use a for free here just for blind patients, but we use a lot these for.

Heron Werner: For for the specialists to discuss complex malformations I think it's easier when you have a 3D model.

Heron Werner: very clear image and discuss the pathology.

NORMA STANLEY: Right.

Heron Werner: With this those kind of file.

Heron Werner: Because years ago we used we used to have neonatologist surgeons are all of them inside the room in discussing in 2d images, the problem is sometimes they were geologists know very well the images, but the surgeon they don't so discussion it's improved with.

Heron Werner: A lot when you have a very clear image 3D image.

NORMA STANLEY: Up to what age they do the imaging how old the fetuses when they're doing is it is it all the way.

Heron Werner: I like first trimester 12 weeks because you can see the whole fetus body in ultrasound and I like.

Heron Werner: The second, the end of second trimester around 22 weeks or 24 weeks when you can see the fetal face by ultrasound, but if you want to see the whole fetus.

Heron Werner: In the his body very well developed at the end of the pregnancy, then you have to do to do the MRI, because MRI has a very big field of view.

Heron Werner: And then you can catch the whole fetus, for example, our nine month fetus inside one image and, then you can bring the fetus in the the real size.

Heron Werner: In ultrasound you cannot do it so in ultrasound I like first trimester and.

Heron Werner: Beginning of third trimester to see the face.

NORMA STANLEY: Yeah.

Heron Werner: In MRI I like.

Heron Werner: The third trimester after 30 weeks.

Nadine Vogel: So I mean what's racing through my mind norma is just you know how many other applications.

NORMA STANLEY: absolutely.

Nadine Vogel: Right, there are for this so Dr. Werner you know i'm sure you've already thought about that we already moved from rocks to people.

Nadine Vogel: What what other applications are you, you know thinking, this could be used for.

Heron Werner: We use a lot here we just published a paper.

Heron Werner: In in conjoined twins.

Heron Werner: To planify the surgery, because when you see, we have our case now the the twins link it with the brain.

Heron Werner: And the discussion, how you sit there, how you separate them is starting prenatal so we start to prepare the 3D models and the surgeons start to talk with the patient.

Heron Werner: How they will procedure after the labor you know and and the patients in the beginning, are very anxious about that.

NORMA STANLEY: Right.

Heron Werner: And when you have the surgeons discussing this. What do you do in postnatal the anxiety of the patients is is getting down, you know.

Heron Werner: So used to prepare the patients and to explain them what What do you do after.

Heron Werner: The labor.

Nadine Vogel: Wow. norma i'm like speechless.

NORMA STANLEY: I know.

Nadine Vogel: My brain is racing right.

NORMA STANLEY: I know I mean I would think, for you know families like ours, who you know who are expecting this might be something that can bring.

NORMA STANLEY: Like you said you'd know what to expect and how to handle it when the baby comes up in the morning and then finding out what you need you know just start planning for the future, so. yeah.

Nadine Vogel: But you're right Dr. Werner. you know I can think when when my daughter was born and she spent three months, in NIC-U and I remember the team.

Nadine Vogel: All the specialist would gather together in the conference room and there was be all these pow-wows, and you know, everybody in that case was sighted, but that doesn't mean that clinically they were sighted right.

Nadine Vogel: In terms of really understanding each of these issues with just made us feel even you know even further away.

Heron Werner: In another point interesting that's when you see all of these 3D images, which is not only 3D printed images but to also have the virtual body.

Nadine Vogel: Yes.

Heron Werner: That can use for the others purpose, for example, I can put the 3D glasses V-R glasses, and I can navigate inside the the womb.

Heron Werner: I can go inside the fetus and I can see, for example, fetus with a tumor in the neck, I can see the relation between the tumor and the airway path.

Nadine Vogel: Wow.

Heron Werner: So many possibilities, you can have with the 3D models so you can print the models so they can see the models virtually.

Nadine Vogel: Yes.

Heron Werner: Now what the sides cursed with the surgeons, for example, we are based in in the lab in the university the surgeons based in the hospital they send me we prepare the file in nowadays they can virtually.

Nadine Vogel: Right.

Heron Werner: You know we're.

Heron Werner: We can discuss virtually the 3D models that.

Nadine Vogel: What a long way, this has come.

Heron Werner: Like metaverse was like you know we be together with their avatars discussing the 3D virtual model.

Heron Werner: In a think soon we can touch also the virtual model, because if you have we have nowadays, we have the technology.

Heron Werner: And we did this experience we published this experience, we can have the virtual model, and it can put a glove, with sensors in the glove and you can go virtually in have the feeling of the virtual.

NORMA STANLEY: Wow.

Nadine Vogel: Ah.

Heron Werner: So it's many we have many possibilities, you know, of course, the future more possibilities to facilitate this. virtual.

Heron Werner: discussion between the specialists and also with the patients.

Nadine Vogel: Well, you know I had to I have to say, as you know, hosting a podcast The last thing I should be is speechless.

[laughter.]

Nadine Vogel: But I'm kind-of speechless, aren't you norma.

NORMA STANLEY: I love it it's just so amazing what technology can do.

NORMA STANLEY: These day, but it's a game changer.

Nadine Vogel: And for good right because you know.

NORMA STANLEY: Absolutely.

Nadine Vogel: You hear, often in the news, you know, yes, we have capabilities from a technological standpoint but are they all being used for good, this is not just being used for good, this is being used for good better best I don't know this is this is truly. game changing.

NORMA STANLEY: Absolutely.

Nadine Vogel: I just I can't believe that we're out of time, I feel like I could spend another half, I just want to listen to more stories.

NORMA STANLEY: Yeah, that was pretty awesome.

Nadine Vogel: So, Dr Werner. Thank you so much for joining us today, I hope we can come back to you and hear a little bit more. About the developments.

Nadine Vogel: Please let us know, you know as there are major.

Nadine Vogel: Developments coming out, let us know bring you right back in and.

Nadine Vogel: and talk to our audience, but this was fascinating so I just want to thank you very, very much.

Heron Werner: It was a very good pleasure to me to be with you.

Nadine Vogel: Oh well thank you.

Heron Werner: I hope to be with you together another day.

Nadine Vogel: Absolutely. Maybe in person. Who knows.

Heron Werner: I know right.

Nadine Vogel: And to our listeners, i'm sure it is fascinating for you as it as it was for us, and this is nadine vogel and norma stanley.

NORMA STANLEY: Norma Stanley.

Nadine Vogel: Co host of disabled lives matter we are more than a podcast we are a movement, and we look forward to having you join us next time on the podcast, see you soon everybody bye bye.

NORMA STANLEY: Be blessed.

Heron Werner: Bye bye. Thank you.

Nadine Vogel: Thank you.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Season 02, Episode 02 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Steven Bier

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the Disabled Lives Matter Podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley!

Nadine Vogel: Hello everyone, this is nadine vogel and I want to welcome you to another fabulous episode of disabled lives matter norma norma stanley my incredible co host how the heck are you today.

NORMA STANLEY: i'm great it's great to see you guys everybody and looking forward to 2022.

Nadine Vogel: I know I can't believe we're already like into 2022 and you know it is time flies I know, everybody says that but.

Nadine Vogel: You know I actually I just say I saw a piece of art recently and it had all these clocks on it and butterflies, and the guy said his team was the time flies and said, well then, there you go.

[laughter]

Nadine Vogel: So today we are interviewing really a wonderful gentleman Steven Bier Steven started a nonprofit and a business as a result of having a son, who has autism.

Nadine Vogel: And i'm going to just really introducing all of this i'm gonna let him do it because I just it's so wonderful I love what you've done Steven so welcome to the show um.

Nadine Vogel: You know i've heard P popcorn for the people of her popcorn with purpose tell us a little bit about what that really is so.

Steven Bier: Popcorn for the people, if you want to go into your imagination, for a second and go back in time to the summer of 2014.

Steven Bier: I have a son was high functioning on the autism spectrum and he could not get a fulfilling or meaningful job and here he is pushing he's pushing shopping carts at ShopRite.

Steven Bier: which you know, would be a great fit for some personalities others know him he wasn't no but he was doing it and then one day he forgot to put suntan lotion on the middle of July, he came home red as a lobster.

Steven Bier: My wife will talk about in a minute my wife said, this is ridiculous Steven you're pretty useless to me most of the time, but the one thing you can do is business can get a business going for Sam and the other young men and women in the neighborhood.

Steven Bier: And you know life's funny I saw I don't know right, I went to a to a business directory and online I opened it up and the very first thing on top was a popcorn stand for sale.

Steven Bier: That's interesting popcorn it's not seasonal it's year round it cuts to all social economic barriers everybody's it's not a fad.

Steven Bier: and it's not dangerous to make.and.

Steven Bier: My son's name is sandy said, Sam How would you like to be in the popcorn business and now was it, seven years later eight years later.

Steven Bier: That little stand has grown into a 4000 square foot processing Center.

Steven Bier: and ask me how many kids we have working for us.

Nadine Vogel: How many kids you have working for you.

Steven Bier: Oh it's so funny you should ask that.

Steven Bier: And I use the word kids lightly, because.

Nadine Vogel: I was just going to say young adults.

Steven Bier: Yes, so. um.

Steven Bier: They are We broke the 50 mark we're in the 50s now.

Nadine Vogel: Congratulations, what what is the age range of these folks.

Steven Bier: Oh, the age range is we have people coming from high school, they have more on job training, although they can work also you know after.

Steven Bier: School going up to, I think one man Rich is in his in his 50s.

Nadine Vogel: Okay okay and does everyone that works to do all 50 have autism or on the autism spectrum, or do they have they have differnt disabilities.

Steven Bier: Absolutely not.

Steven Bier: We do not want to close shop, very specifically, we are literally if you go to the dictionary, and you look up the word neuro diverse right because definition, it will say popcorn for the people.

Steven Bier: We are neuro diverse we have we have such a spectrum, we have young men and women, on the autism spectrum, we have some workers with cerebral palsy, we have two workers who are blind, which just amazes me when they're out there cooking popcorn.

Steven Bier: And we have so yes it's a big spectrum and at this point there's no like official statistics, but we're one of the biggest employers of autistic workers in the country pretty sure.

Nadine Vogel: Wow, that's that's fabulous and and you know we know, I mean norm and I are both you know moms who have daughters with disabilities adult daughters.

Nadine Vogel: So we know the unemployment rate of people with disabilities is high exceptionally high, but i've been told that for those with autism it's even higher Is that true.

Steven Bier: Yes, that the the best educated guess is 80-90% I think when you start hearing them was like that young to be exactly you get the picture is. really big trouble

Nadine Vogel: Right So in addition to 50 people with disabilities that work there i'm assuming you have others that provide guidance that do various things to help them So how are you. structuring.

Steven Bier: Okay so just to sit back for a second, this is a nonprofit.

Nadine Vogel: Okay

Steven Bier: But but but but.

Nadine Vogel: But with capital B.

[laughter]

Steven Bier: We run it like a business with all the good and all the bad you know I could tell you some wonderful success stories and terrible situations where we were unable to employ people.

Steven Bier: One person he became violent and we didn't have a capability for that it is a business, it is looks like a almost like a factory with. pots.

Steven Bier: Everyone's gowned up for it forget the virus even everyone's gowned up to make the food, everything has to be you know sterile.

Nadine Vogel: Right.

Steven Bier: So it is a real business with a huge workforce, we have all the way from one end we do allow some schools to come in and do some some simple work.

Steven Bier: You know, go to the high school range, but then after that.

Steven Bier: it's everyone and there's no there's no figuring where someone's going to fit in and until we meet them.

Nadine Vogel: But in terms of running the business aspects do you have besides yourself right helping other other volunteers are there other parents of these individuals other professionals How does that.

Nadine Vogel: structure work.

Steven Bier: I going to turn your question a little bit and put it this way, what would I advise other parents who wants to do something we get this all the time.

Nadine Vogel: Okay.

Steven Bier: it's interesting people reach out to us, and then, when we reach out back vastly over 9% of time it won't go anywhere and nothing will happen, I think, parents are really.

Steven Bier: Working themselves there you know, probably, if not overwhelmed or under a lot of pressure with having a work on the autism spectrum or any disability.

Steven Bier: Right and now here, at the same time you're doing it you're teaching your your son or daughter and you're getting treatments and you're getting therapies.

Steven Bier: And I now you've come to the last step the employment and it's not there and to step into that void and do it and try to create something yourself can seem daunting.

Nadine Vogel: Oh yes

Steven Bier: Right. It can seem daunting, so I would tell everyone one myself, you know people started it have little to no business, I mean just simple business stuff none of us have MBAs or anything like that.

Steven Bier: Volunteers can be helpful, but with volunteers, you have to really find that diamond in the rough.

Steven Bier: Because most volunteers, they mean well it's in the heart but they'll come for a little period of time there and a little period of time here to find you know we've been lucky to find a few incredible people with Mark Katz he's the CEO the CFO and the CEO also Vera Wang.

Steven Bier: We have a present from Vera Wang and he is ours every day.

Steven Bier: But he's an unusual situation most don't So I say to parents that other parents who were willing to work and you guys get together and think about you going to do is terrific volunteers, are good, but the end of the day, you have to do the heavy lifting yourself.

Nadine Vogel: Absolutely absolutely and and it's my understanding that you've had support from the mayor, I mean just from other companies, I think you what I heard now is you're even selling things beyond popcorn like you're making sandwiches did I hear correctly that boards head has now has taken an. Interest in you guys.

Steven Bier: No, no that's the it's actually the other way and, again, I would say this, the parents looking through things we started out and we went through a couple I wouldn't say failures, but things that just didn't work out well, but we learn, so we started out in a mall so popcorn stay in the mall.

Steven Bier: And the.

Steven Bier: best thing happened, it was my son and two other workers and the first thing we learned was that.

Steven Bier: hey here we have we have these students on the autism spectrum personalities mattered where they would succeed or fail so one young man oh my God he spent a tale he could tell a story he was just great and sales.

Steven Bier: And then we had other people who had poor hand eye coordination and we're unable to do jobs, like sweeping cleaning, so we put them in a different part.

Nadine Vogel: Right.

Steven Bier: And then from there, we began the best thing happened to us the mall threw us out.

Steven Bier: Threw us right out on our butts some international popcorn company came in, gave them like a quarter million dollars to set up a stand and we were out.

Steven Bier: And so we went to another mall we came up with this idea of sandwiches and I know a lot of the parents were trying to form things for you know their children.

Steven Bier: tend to drift towards food, and I would say food is really very difficult, you might want to rethink it there's a lot of moving parts, something which has a lot of moving parts.

Nadine Vogel: Yeah, yeah.

Steven Bier: Refrigeration freshness and so forth, so from that, we just kept it simple, so my take home message here is we actually did the exact opposite, of what you were saying.

Nadine Vogel: Oh okay.

Steven Bier: We sell one. thing. which is popcorn.

Steven Bier: And we sell.

Steven Bier: merchandise now.

Nadine Vogel: Okay okay that's.

Steven Bier: Nothing sexy.

[Lot of Laughter]

NORMA STANLEY: Nice. though.

Nadine Vogel: I really I love that I absolutely love it norma do you like popcorn.

NORMA STANLEY: I love popcorn do you do flavor popcorn.

Steven Bier: It is all gourmet oh norma, this is not fair to you I'm gonna describe it, this is not fair.

Steven Bier: We make things like these cookies and cream, we had this wonderful.

Steven Bier: This one woman Agnes, who was a medical researcher and a culinary major so she kinda understood, chemicals and heat and cold and everything with the other.

Steven Bier: And she made she developed cookies and cream popcorn.

Nadine Vogel: The kids make the popcorn.

Steven Bier: Then they melt white chocolate and pour it over the popcorn and they smash up oreos with a hammer.

NORMA STANLEY: Oh wow.

Steven Bier: Let it dry out cookies and cream popcorn.

NORMA STANLEY: That sounds good.

Nadine Vogel: i'm gaining weight just listening to you.

NORMA STANLEY: I know right.

Steven Bier: There are no calories but it's all for charity.

Nadine Vogel: Oh Okay, well then, there you go I like that.

Steven Bier: We got a message from God.

Steven Bier: The message was, charity, no, no calories.

NORMA STANLEY: Sounds good to me.

Nadine Vogel: I love it.

Nadine Vogel: Well let me ask you this um well there's a couple of things actually let's start with give me a couple of success stories, you know i'm sure that there are many, many can you pick maybe maybe one before we go on brea, and then when we.

Nadine Vogel: Come back.

Steven Bier: There are a lot of favorites but one Patrick Patrick came.

Steven Bier: it's been a couple years already, but when he first came the first few days I said, this is not gonna work out he would work for like 20-30 minutes and then he had to leave to go out and do self stimming self stimulation.

Steven Bier: I'm sure you guys are familiar with that something that difficult in the workplace.

Steven Bier: And he wouldn't break, like every 20-30 minutes to do self.

Steven Bier: stemming is if the two three days I said I don't think this is gonna work fortunate, I was overruled, they said let's hang in there, with him, he is now he went from there, falling, to being able to do things like bagging and labeling now he's cooking popcorn.

Nadine Vogel: Oh my gosh.

Steven Bier: I believe he's on, we have a segment that NBC today did a national television. So if you Google popcorn for the people NBC today, you can go to our website and look under the media section it's there.

Steven Bier: And I believe Patrick is in there being interviewed on national.television.

Nadine Vogel: So what so i'm assuming that he still has to take breaks to self stim.

Steven Bier: that's a great question it's under control now and it can even be scheduled.

Nadine Vogel: Wow.

Steven Bier: And so, everything is way down way.

Nadine Vogel: And do you think how do you feel like the employment kind of weighed into that you know because it sounds like the two probably came together.

Nadine Vogel: In a very positive way.

Steven Bier: You know I think at the end of the day, what are we doing at popcorn for the people we're taking people who are sitting at home unemployed.

Steven Bier: You know, living off the dole, you know it's not now you taking that and coming to an environment with all workers you know some on the spectrum you know some typical things going on is activity you're part of it you're creating, you can see what you've created it's pretty you know obvious.

Steven Bier: When you finish.

Steven Bier: The bag of popcorn, so I think it gives purpose and. um.

Steven Bier: I think that's really why.

Nadine Vogel: Okay, that sounds really good to me um you have one more really cool success story.

Steven Bier: I guess MIA MIA.

Steven Bier: MIA really had difficulty and the most she was able to do at the beginning, what we do is we look for ways to create employment within the system, so when the bags come right let's say the bag and have a pot, where you have your flavor.

Nadine Vogel: mm hmm.

Steven Bier: That's blank there's no flavor and we'll have stickers stickers for chocolate stickers for Carmel and we will have workers such as MIA who that's the highest level, she could do.

Steven Bier: In the office putting on stickers obviously we could print it beforehand pre printed with the word chocolate on there and it costs us maybe a half penny or penny a sticker but it creates a whole lot of work.

Nadine Vogel: Right.

Steven Bier: That's what MIA did unbelievably she went from just putting on stickers to she is now cooking popcorn. when I first came in you kind of knocked me over with a feather.

Steven Bier: which she first started working for us in the mall you turn around and she'd be gone and she'd be heading out in her mind decides she's gonna go get soda and we'd have to go through the mall finding which store she went to the.

Steven Bier: hideout so and now she's in the back okay popcorn.

Nadine Vogel: that's that's really cool.

Nadine Vogel: So what i'd like to do because we were at a time, we have to go on a break, but when we come back from break Steven what I would like to understand is.

Nadine Vogel: What is your process right so let's talk about when we come back you know how do people find out about you, how do you source.

Nadine Vogel: um and you know just what is that process from getting them i'm interested in this job to their employed so let's take a short break when we come back, we will start with that and for our listeners stay tuned do not go anywhere, we will be right back.

Voiceover: And now it's time for a commercial break.

Voiceover: And now back to our show.

Nadine Vogel: Hello everyone and welcome back to disable lives matter more than a podcast, it is a movement and Norma my co host and I are moving along today with Steven Bier and Steven is.

Nadine Vogel: the founder the the disability poppa.

[laugher.]

Nadine Vogel: of popcorn for the people, Steven welcome back.

Steven Bier: Thank you.

Nadine Vogel: um you know you shared a couple of success stories before break what what Norma and I would really like to understand is.

Nadine Vogel: You know how does someone come to you in terms of i'm interested in a job So how do you source number one and then wto what is that hiring and recruiting hiring process onboarding process. um

Nadine Vogel: So we can better understand what that looks like and you never know who else is out there that might be interested.

Steven Bier: Sure, so the way that most people come to us.

Steven Bier: Is we have them come through the website and on the website there's a simple form to fill out if you're looking for employment, just as a standard type questions diagnosis true you know medications you know education history so forth.

Steven Bier: And then from those as the need arises and for those that are a good fit we pick from those applications, so if people are interested just go to popcornforthepeople.com.

Steven Bier: popcornforthepeople.com and you find the employment page and you fill it out, and you know we asked you to be patient, because these things tend to come.

Steven Bier: You know you have no openings for a couple of weeks, and all of a sudden you need three.

Steven Bier: So that that's the main way that we have people contact us.

Nadine Vogel: Okay, and then, once they once you they come in what is the interview process onboarding process, what does that look like.

Steven Bier: So they they'll they'll come in and we'll talk to them and just sort of go over you know their life and what was on the application.

Steven Bier: And then, if it looks like a good fit we'll have someone work a couple of times, maybe three four times i'm not putting them on payroll yet tell them look we're just going to see if this works for you.

Steven Bier: And it starts out sort of as an audition.

Steven Bier: And then it moves into a training and if if the three four times sometimes we'll know after one.

Steven Bier: If it looks like a good fit, then we put them on payroll and we try to be as flexible as we can to make it workout in terms of hours, and so forth.

Nadine Vogel: And what, what is your retention look like.

Steven Bier: what's that. retention.

Nadine Vogel: Your retention.

Nadine Vogel: In terms of you, if you bring.

Nadine Vogel: 50 on do all 50 stay.

Steven Bier: it's very high I don't know the.

Steven Bier: exact number but something specific has to happen for people to leave usually.

Nadine Vogel: Right and so have there been any difficult moments you know any issues where you just didn't hurt your heart.

Steven Bier: So, again popcorn for the people it's a nonprofit you know looking to create employment for the autism community, but to succeed we try to run it as a business.

Steven Bier: And while we try to bend over backwards to make this a workplace that people feel comfortable is sometimes it just doesn't I can think in my mind one worker.

Steven Bier: very nice young man, but he couldn't help hitting the other workers occasionally and we you know there's only so far that we can support someone so you know that that that broke my heart.

Nadine Vogel: Any others like that.

Steven Bier: Usually it's similar type situations where there's an aspect of disability that we can't handle.

Steven Bier: With how Marco sat down in know floor and took some of his clothes off and.

Steven Bier: You know we try we try.

Steven Bier: As well as we can.

Nadine Vogel: No, no, I get it, and that makes sense, so you know what advice would you give to others, so you know there's there's a parent out there.

Nadine Vogel: Who has a young adult has a disability autism on a neuro diverse spectrum let's say and struggling with how to help you know around employment what what advice would you give them.

Steven Bier: yeah so it's a full time job getting young men and women jobs in a way there's an 80-90% unemployment rate it's really a full time job trying to get them a job.

Steven Bier: And one of the things to keep in mind is that many of the large corporations they'll you know they'll try to be kind hearted and bring on disabled workers.

Steven Bier: But in the crunch, you may end up on the second tier so we saw with Sam where they were having him work at a shop, I should say was working in a supermarket. And he. um

Steven Bier: But then when thanksgiving we came he wasn't on the schedule, because they knew they can be super busy Sam wasn't as fast, so I think you have to really look turn over every rock I think the best bet is small businesses.

Steven Bier: And maybe even putting together two or three part time jobs.

Steven Bier: work well.

Steven Bier: As far as if we're going to set something up yourself, you know you started as a mom and pop don't try to set up a huge big thing by yourself, it is definitely doable if you're getting a lot of you like it do the food its food keep it very simple.

Steven Bier: like we did. popcorn.

Nadine Vogel: Right right and then make them make sense and And what about on the other side, so what advice would you give folks who want to hire people who are neuro diverse.

Steven Bier: Okay, so people and there's a lot of that that questions been floating around a lot and I get asked to talk to different groups and that seems to be, we want to do the right thing, but when exactly sure how to do the right thing.

Steven Bier: You know, and you know, one of the things they say look.

Steven Bier: get over it get over your nervousness okay it's another worker and the best way for you to look at it as you're hiring is.

Steven Bier: don't have all the medical aspects look of it as a quirk young man's coming in young women, they have a little quirk Okay, you see it you you, you talk and communicate you understand what it's about you try to work with them to to be able to fit within a system.

Steven Bier: Okay, so I would think one of the most important things is.

Steven Bier: To talk to parents caregivers you know teachers whoever's involved with bringing the person on board.

Steven Bier: And and don't be afraid, you know different is not bad.

Nadine Vogel: Right, I like that.

Steven Bier: A lot of the differences are really strong, so I guess one last thing I would remind businesses that.

Steven Bier: were looking to hire is you have a worker that if I was to make up.

Steven Bier: A stereotype so we have, I think, is pretty accurate, it would be a worker who doesn't it person coming in, on the autism spectrum usually.

Steven Bier: doesn't smoke doesn't drink doesn't stay out late partying will be there on time and this job, if not the most important it's at least one of the most important things in their life and that's what I would say to other businesses.

Nadine Vogel: that's and you know if you think about what businesses want out of their employees, it sounds like a model and play right it sounds perfect.

Nadine Vogel: So um.

Nadine Vogel: I do have one other question but norma do you have anything that you'd like to ask Steven before I go for my last biggie.

NORMA STANLEY: No, I just you know parents, like us, you know there's some people who really want their children to excel.

NORMA STANLEY: And despite their disabilities, what do you say to parents to encourage them to to to encourage the children to be the best that it can be sometimes parents.

NORMA STANLEY: put their children to the side and say well you know he can't parents, like us, you know, we know that our children can do something my daughter is a model, what would you say to other parents like.

NORMA STANLEY: You know, so the.

Steven Bier: I would say mom dad you did all this work to get this far you started off giving all this work to get them into the right school, you went through the.

Steven Bier: IEPs and the district and and then you have all this time, going to doctors and medications right.

Steven Bier: You know which one's going to work changing doses is all the stuff right, then you went through probably a whole bunch of problems, the teen years.

Steven Bier: and parents don't forget there is life after school ends Okay, and that is getting a job and just like you did with the schools and just like you do with finding the best doctors.

Steven Bier: You have to go out there and interact with the business community, and you know if you don't get thrown out on your butt at least you know once every couple of weeks and you're probably not being pushy enough.

Nadine Vogel: yeah I love that how true well so Steven I know that our time is running out, but I do have one last question what is, what are the plans for the future where where is popcorn for the people going next, what are you doing. How you expanding.

Steven Bier: We are too big for our processing center that we need another processing Center.

Steven Bier: And we are looking at the possibility of some way, maybe we can franchise of people open up in other areas i'd say the parents, you know if you're interested, we can start something small.

Steven Bier: This all depends on foot traffic places where there are events going on and that's all we really we really look for so we started out.

Steven Bier: In a mall and now we're at Rutgers football Rutgers basketball Rutgers football.

Steven Bier: Has 50,000 people were at Philadelphia eagles are at the javits Center Rockefeller Center so.

Steven Bier: Some mom or dad out there you have busy events in your neighborhood we can work out set up a tent sell some popcorn.

Steven Bier: So that's one thing we need more processing centers, we need a way to raise money we really haven't been great at getting charitable donations, we have some wonderful people who have given money we're so grateful, but our focus was someone making the popcorn really good.

Steven Bier: So I guess Those are some of our plan so if anyone out there has an idea, you know we're we're all ears.

Nadine Vogel: yeah I think you need to be at least in all 50 states right. don't you think norma.

NORMA STANLEY: Absolutely.

Nadine Vogel: yeah well hopefully this show help that right.

NORMA STANLEY: yeah yeah, I think that's a done deal.

Steven Bier: So you guys are great.

Nadine Vogel: I just you know, I think that you know the three of us right we're all we're all parents have adult children with disabilities and you know as you were describing Steven you know.

Nadine Vogel: All those stages that you kind of go through, I norma and I both right, we can relate completely to the point I can, as you were saying you can I can visualize right, you know where where we were.

Nadine Vogel: But I think for a parent of a child.

Nadine Vogel: with disabilities, no matter the disability yeah there's a saying that you know, a parent's job is never done you're always you're always you're the parent your child will always be your child.

Nadine Vogel: But I think when it comes to disability and it's just exponential right in terms of what we need to do.

Nadine Vogel: Because it's not just you know and Steve i'm happy to hear you know what you think about this, but it's not just making sure that they are gainfully employed and happy and healthy and all of this, while we're alive, but it's really creating something so that when we're gone.

Nadine Vogel: This can continue right that they can live independently and be happy and healthy and productive.

Nadine Vogel: And that's a real difference between us and the parents, whose children don't have disabilities right there will always be the parent with a child be independent, on their own and and we want that, for our kids too but it takes a lot more work.

Nadine Vogel: In many ways to get there, and so I just on a on a personal note i'm so grateful Steven for for all you and your family and everybody has done to make this a success, it is.

Nadine Vogel: And we just I know from from my heart and i'm sure from norma's norma, if you want to add, you know we just want to see you grow and grow and grow.

NORMA STANLEY: Absolutely, it's such a big need in our Community, so we definitely want to see you flourish, so thank you for all that you do.

Steven Bier: My pleasure.

Nadine Vogel: Well, it was wonderful Thank you again for joining us and we definitely look forward to hearing more and seeing what you guys are doing and having more popcorn for more of the people.

Norma Stanley: Right.

Nadine Vogel: So for our listeners, we know that you've enjoyed this taping as much as we have and we look forward to seeing you on our next episode of disabled lives matter more than a podcast it's a movement norma.

NORMA STANLEY: Be blessed everybody looking forward to seeing you next time.

Nadine Vogel: Okay bye everybody.

Norma Stanley: Bye-bye.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Season 02, Episode 01 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Jane Dunhamn

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: To all our listeners, thank you for joining us and welcome to the Season 2 opening episode of the Disabled Lives Matter Podcast. Let's welcome co-hosts Nadine Vogel and Norma Stanley! Nadine Norma take it away.

Nadine Vogel: Hello everyone and welcome back to disabled lives matter yes we're a podcast, but we are more than a podcast we are a movement, and I am joined by Norma Stanley my partner in crime my co host hey norma.

NORMA STANLEY: Hi. i'm so glad to be back Happy New Year everybody.

Nadine Vogel: Yeah, Happy New Year, so we are just delighted to be back with everyone, and especially because of today's guest so Jane Dunhamn Jene is one amazing lady.

Nadine Vogel: You are all going to hear about this on her her work in disability spans 50 years she started when she was two just so everyone knows.

Nadine Vogel: and her work is primarily focused on the intersections of race and disability.

Nadine Vogel: Among, among other things, and and probably one of the most wonderful things that I know about her is that she is the founding Member and director of the National Black Disability Coalition and NBDC so Jane welcome.

Jane Dunhamn, NBDC: Thank you for having me.

Nadine Vogel: Absolutely I you know there's so many things I want to ask you about that i'm like oh my gosh where should we start where should we go so let's let's start with the fact that, like norma like myself, that you are a special needs mom do you want to tell us a little bit about that.

Jane Dunhamn, NBDC: Absolutely um.

Jane Dunhamn, NBDC: If it's okay with you.

Jane Dunhamn, NBDC: i'm going to change language when it's comfortable for me and i've never used the word special needs.

Jane Dunhamn, NBDC: You know, those, those of us who were in the trenches doing Disability Advocacy know that special isn't quite so special.

Nadine Vogel: I agree.

Jane Dunhamn, NBDC: So, they took that out, and I have been working advocating for years for school districts to change that language.

Jane Dunhamn, NBDC: The same way.

Jane Dunhamn, NBDC: Um, folks with intellectual disabilities.

Jane Dunhamn, NBDC: got to start using its. um.

Jane Dunhamn, NBDC: mental retardation I really think we should change that.

Jane Dunhamn, NBDC: So anyway.

Nadine Vogel: So Jane i'll just comment on that because.

Nadine Vogel: that's The biggest challenge is that this.

Nadine Vogel: is legally.

Nadine Vogel: Legally.

Jane Dunhamn, NBDC: Yes.

Nadine Vogel: Means that terminology for IEPs individualized education plans and so forth, and so it actually makes it very difficult not to use that language in many instances, especially when we're talking about younger children.

Jane Dunhamn, NBDC: And you know I, I find it to be very interesting that.

Jane Dunhamn, NBDC: It's such a struggle with school districts and yet we were able to get mental retardation taken out of the medical profession and and the.

Jane Dunhamn, NBDC: The diagnosis and so in this huge entity around our health is able to hear us and to change that language, but our schools, which is supposed to be our basis of education we can't get them so.

Jane Dunhamn, NBDC: where'd that scares me in terms of overall discrimination.

Jane Dunhamn, NBDC: If that's what the attitude is.

Jane Dunhamn, NBDC: What are our schools teaching our children across the board.

Nadine Vogel: Absolutely.

NORMA STANLEY: It's a scary thought for sure.

Nadine Vogel: yeah yeah.

Jane Dunhamn, NBDC: So anyway, you did ask me how did I get involved um.

Jane Dunhamn, NBDC: Like the two of you, when my daughter was born.

Jane Dunhamn, NBDC: And was diagnosed I actively became involved.

Jane Dunhamn, NBDC: Um. I wasn't I didn't approach it with with fear from newness I was very, very thankful that I grew up in a church where.

Jane Dunhamn, NBDC: Our priest sister Julia Carter.

Jane Dunhamn, NBDC: Was paralyzed from the chest down she fell down when she was in college at Morgan state in Maryland, and so I was nine and 10 and we saw Julia with these last deal braces and crutches and she had a car that had hand controls and she was the accountant from for.

Jane Dunhamn, NBDC: Nadine help me what's what's the to be searched place where.

Jane Dunhamn, NBDC: Yes, she was the accountant for Kessler for years and years, that's where she retired from so as a kid I got to see this woman who had significant impairment, this still went to work every day to drove her car and then my priests nephew.

Jane Dunhamn, NBDC: had an intellectual disability.

Jane Dunhamn, NBDC: And and and how he was included so now we're going back 60 years, and these are the images that I saw and then of course the other person they attended the church with you all might know about was Deirdre Davis.

Jane Dunhamn, NBDC: And you know she wasn't actually passed, about a year or so ago, and she was from New Jersey.

Jane Dunhamn, NBDC: And Deirdre was a wheelchair user became an attorney worked in Washington and so and I knew the family, the family.

Jane Dunhamn, NBDC: Were family, friends, so I grew up as a young child seeing people with various impairments included in it in our lives and in our in our faith life, so that when you know my daughter was given the diagnosis, it was okay well let's just move forward.

Jane Dunhamn, NBDC: And so, coupled with what I began to learn about disability and what I had grown up, and you know as a child of the 60s or 50s and the 60s.

Jane Dunhamn, NBDC: Around race, I was able to begin to put those two together and that's where my advocacy really began first it began with disability in general.

Jane Dunhamn, NBDC: Right and then, as the years went on, and looking at the disparities when it came to race and it took me i've only been doing actively the race piece, for the last 20-25 years because my goal was to get my daughter, where she needed to be in life.

Jane Dunhamn, NBDC: And so that was my first priority.

Jane Dunhamn, NBDC: And after she you know was on her own.

Jane Dunhamn, NBDC: I began to really do the advocacy around race and disability.

NORMA STANLEY: It's so weird life is so you know you just never know Deirdra Davis is actually the sister of a friend of mine who lives here in Atlanta, and the aunt of another friend who was actually another good friend of my service amazing small world.

NORMA STANLEY: yeah yeah.

NORMA STANLEY: Yeah yeah is she was a power powerhouse in the White House and the things that she did.

Jane Dunhamn, NBDC: If you hadn't known her grandmother.

Jane Dunhamn, NBDC: Were D got her feistiness from.

Jane Dunhamn, NBDC: The entire family was quite amazing yeah.

NORMA STANLEY: yeah.

Nadine Vogel: Well let's let's do this and let's let's just fast forward, because I have so many questions, and I know our listeners to about NBDC.

Nadine Vogel: Tell us you know what that is what the mission is how how how things are delivered I may interrupt you a few times and Norma just because we're so excited and fire out more questions for everything you say about that.

Jane Dunhamn, NBDC: Sure um NBDC is a grassroots Community I mean Community across the United States, not a local communities of black disabled people and family members.

Jane Dunhamn, NBDC: We do advocacy but the advocacy is really in helping one another, and so I get the information through our website.

Jane Dunhamn, NBDC: I don't do quite so much training, but i've done training around race and disability to organizations.

Jane Dunhamn, NBDC: So pretty much wherever the need is um.

Jane Dunhamn, NBDC: We do through our website, the identity piece, but that takes second seat to giving people information that's going to improve the quality of their lives.

Jane Dunhamn, NBDC: And that's what i'm most focused on how do we improve the quality of life for a black disabled person and or their family members, what is it that they need to know.

Jane Dunhamn, NBDC: Life does not need to be hard because disability is in your life and so that was my my goal in establishing NBDC.

Jane Dunhamn, NBDC: And for a long time, I worked really within the identity piece, and I realized that I wasn't getting to people what they needed as far as it everyday life and what's important in their everyday lives.

Jane Dunhamn, NBDC: So that that's pretty much, much it, you know we've done legislative work.

Jane Dunhamn, NBDC: We were able to get a bill passed in New Jersey that had an agency do an annual evaluation of how services were rendered to people of color in the state.

Jane Dunhamn, NBDC: And that has been replicated in other states.

NORMA STANLEY: I was going to ask you i'm sorry to interrupt but why did you feel the need to do.

NORMA STANLEY: That, because that is a question that you know.

NORMA STANLEY: Why do people want, why do we separate that there was obviously a need.

Jane Dunhamn, NBDC: Oh, oh yeah I don't see it as a separation, I see it as a coming together and then examining because services were not delivered equitably.

NORMA STANLEY: hmm.

Jane Dunhamn, NBDC: So for me.

Jane Dunhamn, NBDC: The ableism and racism or part of the same package when it comes to people of color with disabilities, we can't separate out the racism that exists.

Jane Dunhamn, NBDC: And racism exists in disability, the same way, it is in other parts of our culture in the United States and our policies and so that that needed to be looked at and every time I spoke to a family of color well.

Jane Dunhamn, NBDC: i'll tell you I had a mom in Newark tell me, she was advocating for a young woman who was a single mom who had cerebral palsy.

Jane Dunhamn, NBDC: And I just recently heard about the movie King David I don't know if you're familiar with it, but then the tennis star is dead.

Jane Dunhamn, NBDC: And it's a scene and we're a social worker comes to the House, and this is the same thing that happens over and over again, a social worker came to this young woman's house.

Jane Dunhamn, NBDC: To do an assessment and she went in her refrigerator she just went over boundaries.

Jane Dunhamn, NBDC: And that woman who was advocating for her is.

Jane Dunhamn, NBDC: As a mom also now has an adopted with disabilities said.

Jane Dunhamn, NBDC: I don't believe they would go into a white family's house and go in the refrigerator and the behavior that was there, so it's really clear very, very clear that the differences, and I even before I got into.

Jane Dunhamn, NBDC: The advocacy and looking at the policy.

Jane Dunhamn, NBDC: Just a different sense of I experienced and having my daughter and and what that looked like, especially from first in the beginning with the medical profession and what the delivery and what that outcome was for me.

Jane Dunhamn, NBDC: And so, because of that.

Jane Dunhamn, NBDC: it's important that we look at race and when you think about it, why shouldn't disability have that component to it, we have an agency that looks at the difference in race for for healthcare.

Jane Dunhamn, NBDC: So if we have an agency that looks at race and healthcare, the office of minority health if we have HUD it looks at housing and urban development, why wouldn't we look at race within disability.

Nadine Vogel: So let me ask you Jane what was the outcome of that.

Jane Dunhamn, NBDC: Which one.

Nadine Vogel: Of the city, looking at the disparities in New Jersey.

Jane Dunhamn, NBDC: I don't I don't know because I was in state government at that time.

Nadine Vogel: Okay.

Jane Dunhamn, NBDC: And I retired and then I was busy with NBDC and forming NBDC I have kept tabs and they have not been as.

Jane Dunhamn, NBDC: um.

Jane Dunhamn, NBDC: How can I be kind. No I try to be as kind of as I can as um fruitful as I should be and, following that but, again, this is where the advocacy piece comes in.

Jane Dunhamn, NBDC: This is where the racism comes in.

Jane Dunhamn, NBDC: The advocacy being it is black disabled people and family members that must make sure that these laws are upheld if they don't people ignore those laws.

Jane Dunhamn, NBDC: This is where the the racism come in, because, unfortunately, I will say all but many disability agencies are not necessarily geared towards the hard work of looking at race and what is happening around services for people.

Nadine Vogel: Well they're not they're not always ready to do the hard work that they're funded to do in the first place.

Jane Dunhamn, NBDC: Exactly .

Nadine Vogel: Even beyond race, you know I I can remember it, you know my daughter now is 30-31, I think, and I can remember you know, taking her to agencies in New Jersey.

Nadine Vogel: And because she didn't fit their mold and she had skills that perhaps they weren't used to if we really can't help it like you, are the you are get more funding than any other agency and you're right but, but if you don't fit.

Jane Dunhamn, NBDC: Whether it's race or anything else, what we found is, if you don't fit.

Nadine Vogel: nicely into their little you know box, how they define what they think they are there to do.

Nadine Vogel: You don't you don't get it, and I, and I think race just adds to that you know at my company in springboard we have a whole practice or an intersectionality and we have an event around it and we were talking at our event last fall around intersectionality relative to police brutality.

Nadine Vogel: And that you know people who are disabled are are subject to police brutality in many ways, just as much as the black and brown community and we had individuals there from the police for from other places that said, well, I am black and disable can you only imagine.

Jane Dunhamn, NBDC: Exactly you know what if i'm sorry I didn't mean to interrupt you, but we were saying when we really we those of us from across the country.

Jane Dunhamn, NBDC: Who do have been doing this advocacy work when we started what we would say was I remember, I was at a conference in California.

Jane Dunhamn, NBDC: This is at least 35-40 years ago and I said when I walked through the door I can't separate being black as separating being a mom of a disabled child my daughter will not be able to separate what her experiences as being a black person and what her experiences.

Jane Dunhamn, NBDC: We bring all of who we are to that table.

NORMA STANLEY. Exactly.

Nadine Vogel: And we need to learn.

Jane Dunhamn, NBDC: And, and it was then that we began to get some traction, not just because what I said, but all of us were saying the same thing that we can't separate out, who we are.

Jane Dunhamn, NBDC: To look at all of who we are.

Nadine Vogel: Absolutely, well, we are just at a point where we need to go on break I have.

Nadine Vogel: 15 minutes has just flown so let's do that let's take a short break for our listeners don't go anywhere, we will be right back.

Nadine Vogel: And what i'd love to do Jane is when we come back let's talk a little more let's go a little deeper into NBDC and what your core initiatives or and and how that's playing out that okay.

Jane Dunhamn, NBDC: that's fine Thank you.

Nadine Vogel: Alright, see you all in a minute.

Voiceover: And now it's time for a commercial break.

Voiceover: And now back to our show.

Nadine Vogel: Hello everyone welcome back to the second half of today's episode of disabled lives matter Norma Stanley my co-host and I are interviewing the lovely Jane Dunhamn.

Jane Dunhamn, NBDC: Hello. [laughter.]

NORMA STANLEY: [laughter.]

Nadine Vogel: And um before we went on break.

Nadine Vogel: We said that when we came back Jane we want to hear a little bit more about NBDC.

Nadine Vogel: You know, initially, I think, right now, you have like I know you did a lot that you do, but I think there's like two core programs or initiatives that you're focused on right now wonder if you could share a little bit about that.

Jane Dunhamn, NBDC: yeah, these are the two programs that.

Jane Dunhamn, NBDC: Have financial backing and I just want to take this opportunity to thank those for money comes from contrai contributions and people have just been so generous any because of that generosity, we were able to start our um.

Jane Dunhamn, NBDC: our um.

Jane Dunhamn, NBDC: program or scholarship program last year was the first and we had fordham for awardees and we're hoping, you know it share that we can at least have, for, if not more, and grow from there, the reason that it's important is because.

Jane Dunhamn, NBDC: We want to get.

Jane Dunhamn, NBDC: As many children with an educa a college education as possible.

Jane Dunhamn, NBDC: People children who want to do this because i'm not a proponent that everybody should go to college I think people need to decide who and what they are and what they want to do, but the.

Nadine Vogel: People who are not.

Jane Dunhamn, NBDC: yeah for those who want to go to school, we want to provide that opportunity we want to help be part of that financial support.

Jane Dunhamn, NBDC: Primarily because it cost twice as much for disabled person to go to college, I learned that from from my daughter's experience in that although she had services for personal assistance.

Jane Dunhamn, NBDC: It wasn't enough to care to cover the cost of.

Jane Dunhamn, NBDC: The full time because my daughter has quadriplegic so she needed 24 seven living away from home so on top parents with non disabled kids were in college and talk about the expense, I say everyone add $40,000 a year to pay for some.

Jane Dunhamn, NBDC: Assistance and so because of that.

Jane Dunhamn, NBDC: type of expenses not everybody's expenses like that, but it is, it can be anywhere from 10 to $50,000 more.

Jane Dunhamn, NBDC: per year for a student with a disability to attend college, depending on their needs and families can afford that and then you look at families who are poor and they're poor from from from racism and the lack of opportunities.

Jane Dunhamn, NBDC: It was just really important that we were able to use that money that was donated to us to give back and establish that Program.

Nadine Vogel: So before we move on to to the other program should someone want to donate to that program or should we have a listener, who wants to go to college, who has a disability, how do they reach out to you guys about that.

Jane Dunhamn, NBDC: What they can do is go to blackdisability.org all one word blackdisability.org and the donation is there on the website, as well as the application for the scholarship program okay.

Nadine Vogel: Great Thank you so your other your other big program that that you're being funded for now is, I believe, to have an attorney on staff.

Jane Dunhamn, NBDC: Yes.

Jane Dunhamn, NBDC: You got me just clarify we're working on funding for that particular program that that's what we're working towards.

Nadine Vogel: Why do you need an attorney.

Jane Dunhamn, NBDC: Because we get so many phone calls or emails.

Jane Dunhamn, NBDC: about people who need some direction disabled people who are homeless, the people who are unable to get services.

Jane Dunhamn, NBDC: From vocational rehabilitation services it's across the board it's a myriad.

Jane Dunhamn, NBDC: of issues that people encounter as you also have mentioned that there's the incarceration piece the justice, piece of things that come up where people have been unduly harassed by the police, because of disability, so that is something that.

Jane Dunhamn, NBDC: it's real important that even if NBDC can afford to pay an attorney to take on individual cases, having an attorney who will hear the issue, who can direct families, yes, you do have a real legal case, and this is where you need to go or to have that roster.

Jane Dunhamn, NBDC: would be really helpful to have that person that's on board that folks can get in touch with and have a consult what is the issue and have that open attorney really give them the advice.

Nadine Vogel: mm hmm yeah you know it's it's a shame that.

Nadine Vogel: it's a shame there's such a need for that.

NORMA STANLEY: Exactly.

Nadine Vogel: I mean Norma when I hear about that you know, again we have adult children with disabilities and you know.

Nadine Vogel: I can think over the years of different issues that that we've had or maybe that you had, but you have the means to get what you need but think of all the people out there that don't.

Jane Dunhamn, NBDC: Yeah.

NORMA STANLEY: Absolutely.

Jane Dunhamn, NBDC: And just and just from the medical profession, and I am going to share a very personal story because it's the beginning.

Jane Dunhamn, NBDC: When my daughter was born.

Jane Dunhamn, NBDC: There was an issue with the doctor.

Jane Dunhamn, NBDC: and

Jane Dunhamn, NBDC: Two things that were really important, without going through all the steps of what happened during that delivery in the medical piece.

Jane Dunhamn, NBDC: But I think it was a couple of weeks, maybe two weeks after my daughter was born, it was a notice in the paper that she and her husband had bossier license in New Jersey, because of selling drugs out of their their um their office.

NORMA STANLEY: Wow.

Jane Dunhamn, NBDC: And so um I had friends that worked in the hospital where my daughter was born and it's a Jane you really need to to look into this.

Jane Dunhamn, NBDC: I was young.

Jane Dunhamn, NBDC: The doctor told me that my daughter probably would be live to be three or four if I was lucky I wasn't thinking in terms of legalities I was thinking in terms of keeping my baby alive.

Jane Dunhamn, NBDC: And so, these sort of things happen over and over again so from the health care and doctors and what happens.

Jane Dunhamn, NBDC: And let me just go back because it's important to me that.

Jane Dunhamn, NBDC: When I went to get.

Jane Dunhamn, NBDC: my daughter registered they didn't have a record of her birth, I had to go to the hospital to get a record for birth to take to City Hall, to make sure that she was registered, and when I got I was mistakenly given documentation and what it said was on her the medical.

Jane Dunhamn, NBDC: chart with living child with a question mark.

NORMA STANLEY: Wow.

Jane Dunhamn, NBDC: So it was all kinds of stuff that happened.

Jane Dunhamn, NBDC: In that hospital and that was the very beginning of my journey as a single parent with a child, with a disability.

Jane Dunhamn, NBDC: So you look at that medical stuff that happens to us and how we're in danger, and how our children or our loved ones are in danger, and then you look at at the.

Jane Dunhamn, NBDC: justice system and what happens with people with disabilities and then you look at service delivery, the need is across the board.

NORMA STANLEY: Today, with the situation where people who are just you know black mothers who are having more of their children die, and all the mothers are dying.

NORMA STANLEY: In general, there is something going on in terms of the care and that needs to be looked at.

NORMA STANLEY: Because there are more.

NORMA STANLEY: incidences of those things happening.

Nadine Vogel: yeah.

Nadine Vogel: No. Absolutely.

Nadine Vogel: Well, as we're on this topic of care and health care and medical care, I think, normal you and I would be remiss not to ask Jane about Covid.

Nadine Vogel: And the any impact, but you know Jane what I want to know is the impact of covert if there has been an impact on you on your daughter it on the families you serve what has your experience been.

Jane Dunhamn, NBDC: Um Covide has been devastating for the disability Community um did you see the the.

Jane Dunhamn, NBDC: interview that the with the CDC director said that's been a hot topic, the last couple of days.

NORMA STANLEY: Yes.

Jane Dunhamn, NBDC: I don't know Okay, so that you know that.

Jane Dunhamn, NBDC: People that had these coexisting. um.

Jane Dunhamn, NBDC: issues where the folks who died from from from Covid and so, not just the folks who had died, but the other thing that hasn't been talked about.

Jane Dunhamn, NBDC: Except for advocates and they have not been able to if they even the historical or disability organization had not been able to get that across to to government agencies that people with disabilities are hit hard because of the vulnerability because of.

Jane Dunhamn, NBDC: immune systems already being compromised, and so it hit our household too because of.

Jane Dunhamn, NBDC: The first vaccine that my daughter got back last March, the very next day she woke up and she couldn't see she had vision issues and it took us about.

Jane Dunhamn, NBDC: A month and a half, maybe two months before we're able to get to the bottom of it, and she has a myasthenia gravis, which is an auto immune.

Jane Dunhamn, NBDC: disability and so in the beginning it was okay well there's not enough scientific proof.

Jane Dunhamn, NBDC: To say that but, as time has gone on, yes, they have been able to make that connection, and as of I think recently this only been maybe three people in the country that had a connection between the vaccine and myasthenia gravis.

Jane Dunhamn, NBDC: So.

Jane Dunhamn, NBDC: One of the things that I guess wanted to get out to people what we have done Oh, let me just back up.

Jane Dunhamn, NBDC: and make connect the dots with this my daughter had to retire from her her job she worked for the US Department of Labor here in Washington for 24 years but.

Jane Dunhamn, NBDC: With with her other impairments, and now with this, because she is in pain and even though she can see she cannot look at a screen and be at TV computer screen.

Jane Dunhamn, NBDC: More than maybe 15-20 minutes and then she has to put the blindfold on so it it just we're hoping that she can go into remission but it hasn't happened yet so she has retired from that.

Jane Dunhamn, NBDC: But one of the things that I want people to know is that anybody who has had.

Jane Dunhamn, NBDC: A condition as a result of the vaccine, that there is an agency and it's called Countermeasures Injury Compensation Program and it's under HRsa.gov/cicp, so they really should.

Jane Dunhamn, NBDC: Go to the website, because they asked if you had any sort of.

Jane Dunhamn, NBDC: Other condition as a result of the vaccine and and that's important for people to do.

Jane Dunhamn, NBDC: And so you say from the people that we know people were calling in as my daughter talked to her friends and her friends are community of people with disabilities oh yeah one of her friends.

Jane Dunhamn, NBDC: Had a mini stroke, she was able to come back from it.

Jane Dunhamn, NBDC: And then, as as much as when I came to my daughter's I was renting a car, and I was at the car rental place and talking about why I was here, and the man said.

Jane Dunhamn, NBDC: I wouldn't tell anyone i'm not really part of the disability community, he says, but I have.

Jane Dunhamn, NBDC: Diabetes and I had a reaction to the vaccine, so no matter where I went I was hearing these stories that people that have other impairments had had had a serious reaction from the vaccine, and so I was really glad to hear.

Jane Dunhamn, NBDC: I read an article.

Jane Dunhamn, NBDC: That the advocate advocacy agency, the larger ones, wrote in response to the CDC CDC directors.

Jane Dunhamn, NBDC: disrespectful comment around people with disabilities and Covid dying.

Jane Dunhamn, NBDC: that they will be looking at these issues because it's both issues are equally important, the fact that people died and what does that look like, because one of the things that I learned that I had medical people that I asked was that when studies are being done.

Jane Dunhamn, NBDC: And trials being done for for for for the medicine and new vaccines, they don't use people with disability.

Jane Dunhamn, NBDC: They use the strongest and healthiest.

Jane Dunhamn, NBDC: People as subjects.

Jane Dunhamn, NBDC: And so, that means they don't know how other folks are going to respond to it and i'm surely not in a position to say how that should work.

Nadine Vogel: Right.

Jane Dunhamn, NBDC: But but that's something that needs to be looked at, and I also just want to clarify I would never say to anyone not to get the vaccine, even though it had devastating effect for my daughter too many people in this country have died, however.

Jane Dunhamn, NBDC: If people get a vaccine and they have a reaction a life altering reaction, I do believe the government does have some responsibility.

Jane Dunhamn, NBDC: yeah I feel as if they.

Jane Dunhamn, NBDC: Take they've taken it for the great the greater good, they take they take the hit for the greater good this important that people get the vaccine, but if there is an issue that.

Jane Dunhamn, NBDC: There should be some sort of compensation for people's having a life altering experience.

Nadine Vogel: yeah you know, in my experience and Norma, I don't know about you, but I have found that when someone with a disability.

Nadine Vogel: In this situation, Covid gets a vaccine has a reaction gets into a car accident gets her that the the general rule of thumb is we blame it on the original disability.

NORMA STANLEY: Yes.

Nadine Vogel: And it has nothing to do with that you were you know rear ended with your car nothing to do with you took this vaccine that we know you don't know a lot about and again i'm a proponent of the vaccine.

Nadine Vogel: and getting boosted, and all that, like you, Jane so, I agree, but I think is a bigger issue a play that I think you touched on, which is just that.

Nadine Vogel: Again, it goes back to the discrimination, the health disparities around people with disabilities in terms of no matter what happens oh it's not our fault, they were disabled before I must have been that it's not this it's because of their disability is just coming out now after 30.

Nadine Vogel: Things lLike that it's very frustrating.

Jane Dunhamn, NBDC: yeah and really it's because of the impairment, because I look at disability, people are on disabled because of ableism because of the discrimination so it's the actual impairments that people have the body mind differences that they keep going back to I mean we're we're mom so.

Jane Dunhamn, NBDC: I don't know if you've experienced, but by the time I do it, it was 10 years old, you know us she still gets gets hers falls down or get sick and and nothing to do with the cerebral palsy.

Jane Dunhamn, NBDC: And every time we went to a hospital the intake was tell me about your delivery it's like she has pneumonia, why are we talking about my delivery 10 years ago.

Nadine Vogel: yeah oh my God that is so true.

Jane Dunhamn, NBDC: And I hear that from adult people with disabilities.

Jane Dunhamn, NBDC: That whenever they are in a medical situation they have to be firm and this is why i'm here, and you know you're crossing boundaries you're going into personal matters that has nothing to do with where I am i'm here today.

Jane Dunhamn, NBDC: So there's still a lot of.

Jane Dunhamn, NBDC: work to be done.

Nadine Vogel: Right or you know that my my pet peeve that Norma's heard me talk about this that you know i'll accompany my daughter let's say to a doctor to a hospital or something.

Nadine Vogel: And you know she she drove there she's communicating with them she's college educated and they look at me and say so mom you know and then i'm like one i'm not your mom and to why you're talking to me i'm just like hearing it like it, it just makes me crazy.

Jane Dunhamn, NBDC: yeah yeah yeah.

Nadine Vogel: It makes me crazy. Well, unfortunately what's making me crazier is that we are out of time. Oh my God.

NORMA STANLEY: I know. Great conversation.

Jane Dunhamn, NBDC: Thank you for inviting me and it was a pleasure.

Nadine Vogel: This was delightful just delightful and, and so the work you're doing Jane is so incredibly important, and I just hope we have ways to talk with you more and.

NORMA STANLEY: Yes.

Jane Dunhamn, NBDC: If I have a minute just to add one is the conversation we need to get to, but I wanted to talk just a little bit about impairmentISM and I won't go into it, because we're at a time, but when.

Jane Dunhamn, NBDC: We as a disability community must come together we must come together we are so separate by separated by a medical diagnosis.

Nadine Vogel: Absolutely.

Jane Dunhamn, NBDC: And so.

Jane Dunhamn, NBDC: i've come up with impairmentism I know what used in the academic field but different people use a different ways.

Jane Dunhamn, NBDC: And it's been very frustrating for me for people that I care about.

Jane Dunhamn, NBDC: who have disabilities don't have intellectual disabilities get so insulted if someone thinks they have an intellectual disability and it's like why.

Jane Dunhamn, NBDC: It you know if you think that's such a big thing, what do you what are you thinking about people's intellectual disability their your brothers and your sisters too why are you fighting to prove to the world how smart, you are.

Jane Dunhamn, NBDC: If you are, you are, and if somebody doesn't think that, why are you so offended.

Jane Dunhamn, NBDC: That means does your brothers and sisters with intellectual disabilities, need to be offended, we need to come together and stop trying to say well there's a hierarchy here, and this person's impairment, it makes me.

Jane Dunhamn, NBDC: More or less than who I am.

Jane Dunhamn, NBDC: And I really would like to see an end to that I looked at colorism and colorism is a prejudice or discrimination against indigenous with a dark skin tone typically among people have the same ethnic or racial group.

Jane Dunhamn, NBDC: And impairmentism is the same thing I coined it as prejudice or discrimination against individual with intellectual disabilities from disabled people.

Jane Dunhamn, NBDC: And the need by disabled people to convince others that they do not have an intellectual impairment and so that's something that I really want to talk about and and really come together, especially because academics really set the tone for disability studies and yet.

Jane Dunhamn, NBDC: I just don't find that there is enough of coming together.

Jane Dunhamn, NBDC: Around, including people with intellectual intellectual disabilities as a family of disability.

Nadine Vogel: So it's interesting that you say that, though I mean, I agree with you 500% whether it's colorism it's ableism, you know impairment isn't any of those isms I me.

Nadine Vogel: yeah yeah.

Nadine Vogel: Right.

NORMA STANLEY: There's too many isms.

Nadine Vogel: Exactly if you could remove all the isms would be good. um I do think, though, and this is just from my experience in working with corporations.

Nadine Vogel: And the employment of people with disabilities, I do see one of the reasons I don't say right or wrong, but I see it as one of the reasons this occurs with the disability Community around cognitive disabilities.

Nadine Vogel: Is that companies tend to lump everyone together and they'll say Oh well, this position requires you know someone with a college degree or this position requires you have a disability well obviously you couldn't do that, and so this.

Nadine Vogel: There are assumptions that are made about people with disabilities, that if you have a disability and must also impact your cognitive ability and therefore.

Nadine Vogel: You wouldn't be eligible for this position, so I do think that there's an issue there and we we do a lot of Springboard where we training companies and training executives, so that they don't think that way because it when they do it contributes to exactly what you were just talking about.

Jane Dunhamn, NBDC: Well yeah I think that's from a policy perspective.

Jane Dunhamn, NBDC: But i'm looking at.

Jane Dunhamn, NBDC: Individuals who really are accomplished individuals who get highly offended then when when someone thinks that they have intellectual impairment and it's like let.

Jane Dunhamn, NBDC: It go they've already been people already established them and they're sitting where they need to be sitting.

Jane Dunhamn, NBDC: But

Jane Dunhamn, NBDC: If someone comes up I've sat with someone doing an event, and it was an event for people with disabilities and he was from out of state and other people with disabilities, because of the speech impairment thought that he had an intellectual disability.

Jane Dunhamn, NBDC: Those are his brothers and sisters, why are you so annoyed by this.

Jane Dunhamn, NBDC: And so i'm saying more from a person to person people to people.

Jane Dunhamn, NBDC: We need to start making these hierarchies ourselves.

Jane Dunhamn, NBDC: that's.

Jane Dunhamn, NBDC: that's where I sit with that.

Nadine Vogel: I agree.

Nadine Vogel: When I when I hear stuff like that i'm like you know I get over it get over yourself.

Jane Dunhamn, NBDC: yeah.

Jane Dunhamn, NBDC: yeah but.

NORMA STANLEY: It comes downs to everybody being their.

NORMA STANLEY: authentic self.

Jane Dunhamn, NBDC: I know, but.

NORMA STANLEY: And a lot of people don't know how to do that.

Jane Dunhamn, NBDC: Yeah and and it's a little bit it's a lot more complicated than that, but I think, as long as we talk about it, because if that's if that's the case it's like Okay, we get to me saying and.

Jane Dunhamn, NBDC: And the Jim crow South why don't you get over yourself.

Jane Dunhamn, NBDC: Yeah it's a little bit more embedded than that and we.

Jane Dunhamn, NBDC: Just need to be aware of who we are and and and where we see people in the world yeah.

Nadine Vogel: Jane what what can we do to help move that along, because I do think it's important.

Jane Dunhamn, NBDC: I think we can can begin to talk about it amongst ourselves in our Community.

Jane Dunhamn, NBDC: there's a lot of talk that we need to do that, amongst ourselves and amongst our families, so the talk that adult people with disabilities have and who we talk among ourselves as one conversation then there's the conversation of.

Jane Dunhamn, NBDC: Families, we as family members can advocate.

Jane Dunhamn, NBDC: For for our kids we can do over the health care, but when we sit with family members who treat our children less than the other kids in the family, those conferences conversations go silent, because if you're too vocal about it there, she goes again.

Jane Dunhamn, NBDC: And it's actually you with the rest of your family, so we need to talk around ourselves as people with disabilities and then we need to talk around our families and it's really, really hard, but we have to have conversations, aside from policy.

Nadine Vogel: Compensation was family conversations, they are, we can have a whole discussion just on that topic.

Nadine Vogel: And maybe we'll come back and do that.

Jane Dunhamn, NBDC: Okay.

Jane Dunhamn, NBDC: Well i'm sorry to take more time, but thanks so much.

Nadine Vogel: Again, thank you so much, and thank you for everything that you do.

NORMA STANLEY: Yes.

Nadine Vogel: Okay bye.

Jane Dunhamn, NBDC: bye.

Norma Stanley: Have a blessed one.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Season 1, Episode 39 Co-Hosts: Nadine Vogel & Norma Stanley Guest: N/A

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley… yay!

Nadine Vogel: Well Hello hello to all our listeners, this is nadine vogel and Norma Stanley, Norma say hey to everybody.

NORMA STANLEY: hey everyone how's it going.

Nadine Vogel: We, as you know, are your fabulous co hosts of disabled lives matter which is more than just a podcast, it is a movement, and you know I think thinking about this a lot norma I think we have created a movement.

NORMA STANLEY: I I really pray we did.

NORMA STANLEY: It is so much needed and the seems like it's starting to take some steam.

Nadine Vogel: yeah absolutely so first Norma, I would like to apologize to everyone for not being with all of you for thanksgiving so we.

Nadine Vogel: hope that you all had a fabulous thanksgiving holiday with friends with family that you got to eat lots of Turkey or whatever fixings that you like, I know that I was stuffed probably more so than the Turkey.

[laughter]

Nadine Vogel: How about you norma.

NORMA STANLEY: Oh absolutely I i'm still eating it i'm done with it now, though.

Nadine Vogel: Oh gosh no, we still have it ah, ya, yay.

Nadine Vogel: So what we thought we would do today is instead of having a guest we thought we would be our own guests.

Nadine Vogel: And have a conversation and I don't know how many of you have tuned in to this really cool program called disability in America it's being.

Nadine Vogel: Hosted by the Washington Post and the Ford foundation Frances Stead Sellers is the person she's a senior writer at the Washington Post and she's been interviewing individuals.

Nadine Vogel: And today, I just heard wasn't actually say but earlier, I heard one of the programs, and it was about how disability drives innovation.

NORMA STANLEY: mm hmm.

Nadine Vogel: and norma I thought wow that's like right up our alley right like we.

NORMA STANLEY: I love it.

Nadine Vogel: Really we've been talking about that, and they have three individuals on Sinead Burke, who does.

Nadine Vogel: adaptive let me think, I think, she does fashion and she has dwarfism and she does advocacy She then there was Wesley Hamilton so Sinead Burke Wesley Hamilton he does adapted physical training.

NORMA STANLEY: mm hmm.

Nadine Vogel: it's really cool he uses a wheelchair, and then Jeffrey Mansfield is deaf and is an architect.

NORMA STANLEY: Yeah.

Nadine Vogel: And so talking about different aspects of innovation.

Nadine Vogel: And one of the things that just really resonated with me and I thought it'd be good to talk about is you know when the A-D-A came out, it was it was the basic minimum right, it was.

NORMA STANLEY: That's right.

Nadine Vogel: Right and I get frustrated and I know you do norma about you know companies that tout well you know we're A-D-A you now compliant and we're A-D-A accessible, well like all right, so what.

Nadine Vogel: That's the law.

NORMA STANLEY: mm. hmm.

Nadine Vogel: Or if in another country meeting those minimum minimum guidelines and what they were talking about was you know amplification.

NORMA STANLEY: mm. hmm.

Nadine Vogel: Like in architecture amplify the design codes and the standards in the built environment so that it's not just compliant but it actually promotes delight.

NORMA STANLEY: That's right.

Nadine Vogel: It's not check the boxes let's create this amazing experience for people.

NORMA STANLEY: Exactly exactly and and why not I mean the population calls for this it's a huge population.

NORMA STANLEY: And.

NORMA STANLEY: You know it's not just individuals it's the network and there's a global network why not the families individuals make life easier for everyone.

Nadine Vogel: Absolutely, and you know it's funny because Jeffrey as he was talking about, I was imagining he's talking about airport someone had asked. A question about airports.

NORMA STANLEY: mm. hmm.

Nadine Vogel: And you do you remember the days when you were waiting for the plane, the only way you knew they were boarding was either you saw the mass exodus right going out the door to the plane, or they were on those you know handheld speakers which were hard to understand anyway.

NORMA STANLEY: Yeah.

Nadine Vogel: And announcing you know group A group B, but now you see them on screen as well.

NORMA STANLEY: Oh.

Nadine Vogel: So there's a screen above the door that says, you know now boarding this class or now recording group A group B so if someone is deaf or has hearing loss, they can just look at the screen.

NORMA STANLEY: Yup.

Nadine Vogel: Right so that it's it's there's multiple ways of providing access and I thought that that was really important and something Jeffrey said, we were talking about this minimum the minimum standards, and he said why can't we create maximum why.

NORMA STANLEY: Exactly.

Nadine Vogel: Why is it always have to be.

NORMA STANLEY: Bare miniumum.

Nadine Vogel: Right. Why aren't we looking at the culture of people with disabilities and it is a culture right.

NORMA STANLEY: Absolutely.

Nadine Vogel: Why don't we design.

Nadine Vogel: Tools and areas to uplift people.

NORMA STANLEY: That's right. Why don't they it just boggles my mind I.

NORMA STANLEY: don't understand it, I just don't.

Nadine Vogel: yeah it does and have you i'm sure you've experienced you know people say Oh, people with disabilities as if all disabilities are the same and all people.

NORMA STANLEY: Right.

Nadine Vogel: As if it's monolithic.

NORMA STANLEY: Right.

Nadine Vogel: As opposed to intersectional.

Nadine Vogel: Right. Because there are people who are deaf or blind with physical disability and some people don't have more than one.

NORMA STANLEY: That's right. And many people do.

Nadine Vogel: Ab absolutely, and so the question was you know how do we build with disability narrative in mind get away from that old medical model which A-D-A in some ways still although it's created amazing opportunities it's still in some ways, almost feels like the old medical model of disability.

Nadine Vogel: Right. So how do we, how do we look and create something that brings memory and brings culture and brings all kinds of narratives that really are truly representative of and positive for people with disabilities.

NORMA STANLEY: That's the $100,000 question i've gotta say.

NORMA STANLEY: You know.

NORMA STANLEY: Each of the various cultures that are out here who are fighting for their own individual space in society.

NORMA STANLEY: It was always a journey was always a process, it was definitely not overnight, and you know the disability Community now being one of the largest consumer segments, and as well as you know, a major population, they are now fighting for that voice and that space and um.

NORMA STANLEY: You know it's time for people to start to take notice and they are starting to take notice which is a good thing, which is one of the reasons why this whole Washington Post that took place.

NORMA STANLEY: But still, like you, like Mr. Mansfield said, while we still at the bare minimum it's been there's been enough people in the disability Community here in our society that should have been happening all along.

Nadine Vogel: Right.

NORMA STANLEY: But I guess, we have to start somewhere.

Nadine Vogel: Yeah, absolutely.

Nadine Vogel: Well The other thing I thought was really interesting so Wesley um is is someone who uses a wheelchair.

NORMA STANLEY. mm. hmm.

Nadine Vogel: He is disabled because he was shot with a bullet.

NORMA STANLEY. mm. hmm.

Nadine Vogel: You know.

Nadine Vogel: What I found fascinating, though, is that he was overweight his whole life, and I think about he does he deals with accessible gyms.

NORMA STANLEY. Yes.

Nadine Vogel: Physical fitness working out with a disability. Right and I think calls it adapted athletics, but he said he was overweight his entire life it wasn't until he became disabled and using a wheelchair that he got into shape.

NORMA STANLEY. Wow.

Nadine Vogel: Now, think of how in many ways that's the opposite of what most people think right. Most people think if you become disabled and you start using a wheelchair you're not going to exercise.

NORMA STANLEY. Right.

Nadine Vogel: Right.

Nadine Vogel: You really have to watch what you eat because you're just going to blow up and get big and he said that because of his lack of physical acuity.

NORMA STANLEY: uh huh.

Nadine Vogel: When he became disabled he was so out of shape.

NORMA STANLEY: mm hmm.

Nadine Vogel: That that in and of itself became disabling.

NORMA STANLEY: Yes.

Nadine Vogel: Right. And that's what really forced him to realize, you can and need to be in great physical shape you're going to be, you know operating a wheelchair you're going to be doing all these things.

Nadine Vogel: So it was fascinating and he was talking about how gyms and all kinds of related facilities and not accessible to people with disabilities.

Nadine Vogel: And at springboard um our team that does physical accessibility audit we've had an opportunity, many times to when we're on a company's campus to see their company gyms.

NORMA STANLEY: mm hmm.

Nadine Vogel: And it's always fascinating to see the inaccessibility.

NORMA STANLEY: They don't they don't think about it again I don't think they really notice when they're building these places, whether it's a you know development, the housing development or real estate place.

NORMA STANLEY: Things they they don't have people who understand what's needed as part of that planning process today.

NORMA STANLEY: And you would think that they would remember.

Nadine Vogel: Yes.

NORMA STANLEY: To do that.

Nadine Vogel: You would think.

NORMA STANLEY: You would think.

Nadine Vogel: You would think so, the other, the other topic that that they focused on was fashion and the fashion industry and stayed all about that, and she works with the fashion industry.

Nadine Vogel: Um so something she said that really resonated with me and she said that the the fashion industry is one that creates and cultivates culture.

NORMA STANLEY: mm. hmm.

Nadine Vogel: Right you think of all the magazines fashion magazines right.

NORMA STANLEY: That's right.

Nadine Vogel: So if if that industry is really setting the benchmark for culture.

NORMA STANLEY: Yes.

Nadine Vogel: That industry is ignoring people with disabilities.

NORMA STANLEY: Yes.

Nadine Vogel: Right then there you go.

Nadine Vogel: So.

Nadine Vogel: You know, we have a lot of adaptive fashion, now that has come about.

NORMA STANLEY: Yes.

Nadine Vogel: But again, she made a really good point is like okay so we're creating this adaptive fashion, but are we also ensuring that the fashion designers of people with disabilities.

NORMA STANLEY: Right.

Nadine Vogel: Right the various suppliers, the various parts of that supply chain.

NORMA STANLEY: Yes.

Nadine Vogel: So that. It's considered all the way around.

NORMA STANLEY: That's right.

Nadine Vogel: And why is the general design and then adaptive Why is it, why don't we think about adopted more universally and she gave a great example I started laughing and she and I know you relate to this.

NORMA STANLEY: Uh huh.

Nadine Vogel: So she used the example for women or anyone who chooses to wear a dress.

NORMA STANLEY: Yeah.

Nadine Vogel: The zipper is always in the back.

NORMA STANLEY: Yes.

Nadine Vogel: Right so she said, who design dresses with zippers in the back. men, because she said, the idea was you know if you're if you're a woman by yourself, you know you probably have to be contortionists to try to unzip that dress.

NORMA STANLEY: Yes.

Nadine Vogel: Right.

Nadine Vogel: So the assumption is, you would have a husband someone with you.

NORMA STANLEY: Um hmm.

Nadine Vogel: That could do that.

NORMA STANLEY: Yeah.

Nadine Vogel: Now I don't know about you i've been in hotels and you know countries even like India, where it's really not appropriate and i've gone to the front desk and asked could you zip this up for me.

[laughter]

Nadine Vogel: So she made a really good point and said so, it would not be a don't, we have to adapt that and that's for everybody.

NORMA STANLEY: That's for everybody.

Nadine Vogel: That's just not just for people with disabilities um the other thing she made a really good point of was where does the fashion industry, employment, where we see fashion industry, employment, most of the time it's in the retail world.

NORMA STANLEY: Like going to the malls store.

Nadine Vogel: But other retailers really thinking about accessibility are they thinking about their flooring so it's more accessible to people.

NORMA STANLEY: Right.

Nadine Vogel: And it was it was just it was you know it didn't tell me and i'm sure if i'm saying anything to you that you didn't already know.

NORMA STANLEY: Right.

Nadine Vogel: But the fact that they were putting it out there.

NORMA STANLEY: That's what I love about it, I think it's really helpful to have you know, a major outlet like the Washington Post and the Ford foundation.

NORMA STANLEY: To make that possible.

NORMA STANLEY: And that it's a continuing conversation that's important.

Nadine Vogel: Right.

NORMA STANLEY: And it's bringing a level of prejudice to do it to to how important the disability community and how significant they are.

Nadine Vogel: Right.

NORMA STANLEY: You know, in our society, and people need to know that.

Nadine Vogel: Right.

Nadine Vogel: Because you think about the Tommy hilfiger line let's just use that as an example.

NORMA STANLEY: mm hmm.

Nadine Vogel: Their first line was for kids. with disabilities.

Nadine Vogel: For adaptive clothing well what if it's not the child that has a disability, but it's the mom or dad.

NORMA STANLEY: Right and children grow up.

Nadine Vogel: Right. So how do we, how do we connect the dots and ensure that we're just all we all wear clothes.

NORMA STANLEY: Always.

Nadine Vogel: Right.

Nadine Vogel: We should all be seen as customers and you know how do we do this in a way that systematic.

NORMA STANLEY: mm hmm.

Nadine Vogel: It's sustainable.

Nadine Vogel: You know what does that look like and how do we ensure that the businesses, even beyond fashion right that that they're doing that.

NORMA STANLEY: Right.

Nadine Vogel: And some words that you know that she brought up that again not new but equitable just creative and accessible for all, and I think you know that that says it right, because you know I had the opportunity to work with the Hilfiger line, and you know.

Nadine Vogel: You know. For Sierra right.

Nadine Vogel: How you. What you wear affects how you feel.

NORMA STANLEY: Absolutely absolutely i'm a big proponent of dressing up and looking good.

Nadine Vogel: I know you are, cause you because I've seen you.

[laughter.]

Nadine Vogel: You are always looking hot. babe.

NORMA STANLEY: I thank you very much.

Nadine Vogel: And Sierra by the way.

NORMA STANLEY: Exactly Sierra does not leave the house in anything but you know, on top of a fashion game that's just the way we are, and you know.

NORMA STANLEY: Just because she's in a wheelchair doesn't mean she can't look and she knows the difference when she looks like just regular, which is that on something that's designer or looking something really cool.

NORMA STANLEY: She knows it. And and and she she has a different air about her when she's dressed up.

Nadine Vogel: Exactly exactly and so take that out of fashion for a second.

NORMA STANLEY: mm hmm.

Nadine Vogel: And think about when a business creates you know, an accessible bathroom.

Nadine Vogel: Right and they make it. to code.

NORMA STANLEY: mm hmm.

Nadine Vogel: It's not pretty typically they're not putting the pretty in it like you see in some of these you know beautiful hotels luxury hotels. Right.

NORMA STANLEY: Right.

Nadine Vogel: And and and again, why not if there's an accessible restroom why doesn't that one have full length mirrors, why is that always just the smaller one right assuming you're in a wheelchair, like those are the kinds of things that nobody's thinking about.

NORMA STANLEY: Nope.

NORMA STANLEY: And that's what I need people like us.

[laughter.]

Nadine Vogel: You got that right. babe.

Nadine Vogel: You got that right.

NORMA STANLEY: Cause we think about it all the time.

Nadine Vogel: Right, and so, how do we move from I mean I know i'm always talking to companies that you know how do you move from compliance not just to best practices, but even just better practices, improved practices right next practices, you know the best practice thing is kind of old.

NORMA STANLEY: Yeah.

Nadine Vogel: Right.

NORMA STANLEY: Yeah it is, but you know, I guess with any kind of a real change.

NORMA STANLEY: It starts with the top.

Nadine Vogel: Absolutely.

NORMA STANLEY: And the leaders of these companies are still resisted in many ways the same, I mean that's why the whole D-E-I thing is still still has to be addressed, because the leaders of these companies are still not truly committed.

NORMA STANLEY: The same thing just made from top down.

Nadine Vogel: Too you know company leaders talk about innovation, all the time they need innovation, and now they certainly need employees right.

Nadine Vogel: But. They need innovation um people with disabilities are so innovative, they have to be.

NORMA STANLEY: They have to be. Yes.

Nadine Vogel: I see you see it in Sierra I know I see it in my own daughter and colleagues and friends right they have to be innovative, so if we take a step back and realize that disability in and of itself and people with disabilities can drive innovation.

NORMA STANLEY: Yes.

Nadine Vogel: My gosh shouldn't we have more people with disabilities.

Nadine Vogel: At the table.

NORMA STANLEY: Participating.

Nadine Vogel: For everything we talked about.

NORMA STANLEY: Exactly exactly.

Nadine Vogel: Someone said to me, nothing about us without us kind of thing.

NORMA STANLEY: Yes.

Nadine Vogel: And it's it's, how do we ensure that we're, including the voices and not just the voices, we want to hear but.

Nadine Vogel: All voices and and I think this applies to race it applies to sexual orientation,

NORMA STANLEY: Yes.

Nadine Vogel: Right because, again, equity, as I always say it's not about treating everyone the same but rather by giving everyone the same opportunities.

NORMA STANLEY: Yes. Absolutely.

Nadine Vogel: But. We have to bring them to the table to do that.

NORMA STANLEY: We do, and let them be free enough to actually speak give them the know the authority.

NORMA STANLEY: To be able to feel comfortable.

Nadine Vogel: Yeah.

NORMA STANLEY: To say that's wrong.

Nadine Vogel: Right. Absolutely.

Nadine Vogel: You know what disability disabilities do matter. Right.

Nadine Vogel: And I think that you know when I think about this first season, I mean you know it's it's it's interesting because we're concluding our first season of the pilot.

NORMA STANLEY: I know. Right.

Nadine Vogel: And I still feel like oh my gosh you're talking about the first episode.

NORMA STANLEY: Yeah.

Nadine Vogel: So we're concluding the first season and I.

Nadine Vogel: I think about all the people that we've interviewed.

NORMA STANLEY: mm hmm.

Nadine Vogel: I you know I feel like a mom you know I can't pick which one's my favorite.

NORMA STANLEY: I know there have been some awesome guests.

Nadine Vogel: For all and and what makes these guests so awesome is what they have done, not in spite of but because of their disability.

NORMA STANLEY: Yeah.

Nadine Vogel: And and and taking that and run with it, and I just hope that our listeners who don't have disabilities, really, really, you know pay pay heed to that.

Nadine Vogel: And really get that you know.

NORMA STANLEY: Yeah yeah when my daughter, and I were at NBC the other day, because she had an opportunity to be an extra on NBC TV show that's going to be airing in January.

NORMA STANLEY: And one of the production assistants, and it was a room full of people with disabilities, of all types across the spectrum and he was going on, he said he never seen that many people with disabilities that he didn't know hw didn't realize.

NORMA STANLEY: That so many different.

Nadine Vogel: Wow.

NORMA STANLEY: So. that's what I said.

NORMA STANLEY: Wow. That was interesting he was a young man, he was maybe about 25.

Nadine Vogel. Right.

NORMA STANLEY: He was very curious about how the people either acquired it or was it that they had and how they were living in doing that everybody in the room, were doing the thing I mean.

NORMA STANLEY: They were doing their thing, and he.

NORMA STANLEY: It encouraged him and it made him curious.

Nadine Vogel: Well what's interesting though about that Norma is that you know one hand i'm like does he live under a rock like.

NORMA STANLEY: I know. Right. That's what I said.

Nadine Vogel: But on the other hand, if companies are not hiring enough people with disabilities.

NORMA STANLEY: RIght.

Nadine Vogel: He's certainly not seeing them as colleagues.

NORMA STANLEY: Exactly.

Nadine Vogel: Right and you spend you know a good chunk of your day working.

NORMA STANLEY: That's right.

Nadine Vogel: And if we're not doing more to have people with disabilities in the media, so when he is you know i'm you know watching streaming.

Nadine Vogel: TV watching movies he's not.

Nadine Vogel: You know, so I went hand i'm like wow and the other hand, and like. Ugh.

Nadine Vogel: It just reinforces what we have to do.

NORMA STANLEY: Yeah.

Nadine Vogel: So with that I just want it well, first of all I want to say thank you. You are an amazing co-host.

Nadine Vogel: I love doing this with you.

NORMA STANLEY: Yeah i'm having a great time too.

Nadine Vogel: This is, this is just.

Nadine Vogel: terrific and and you know I certainly want to wish our guests our viewers or listeners a fabulous fabulous holiday season of health and wealth and happiness and going into having the most amazing 2022.

Nadine Vogel: Absolutely absolutely.

Nadine Vogel: And I certainly hope that this podcast can contribute to that at least in a small way.

Nadine Vogel: Right. To people so um I also want to say happy and healthy holidays New Year to you and to Sierra.

NORMA STANLEY: Thank you, same to you.

Nadine Vogel: I just I can't believe it's December oh my.

NORMA STANLEY: I know. The year slipped by.

Nadine Vogel: I know and and to our audience, we will be back live on January Thursday January 20.

Nadine Vogel: And we look forward for you to rejoin us please tell your friends tell your colleagues tell everyone, you know, this is an important topic.

NORMA STANLEY: Yes.

Nadine Vogel: Like like Norma I always say at the beginning it's not just a podcast it's a movement.

NORMA STANLEY: Yes.

Nadine Vogel: And we need you all of you to help us move this along and grow.

NORMA STANLEY: Absolutely and it's going to grow with with you or without you.

Nadine Vogel: Hopefully with you.

NORMA STANLEY: Yes. Hopefully with you.

[laughter.]

Nadine Vogel: So with that Happy healthy New Year everybody norma I love you.

NORMA STANLEY: Yes.

Nadine Vogel: I can't wait to see on.

Nadine Vogel: January 20.

NORMA STANLEY: Yes.

NORMA STANLEY: And look forward to it.

Nadine Vogel: We'll talk then bye bye everybody.

NORMA STANLEY: Have a blessed holiday bye bye.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of the podcast. Make sure to tune in on Thursday, January 20th when we kick-off Season 2 of Disabled Lives Matter. You know it's not just a podcast, it's a movement. So with that to all our listeners. Happy Holidays. Happy New Year. May it be filled with love, joy and blessings. See you next year.

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Season 1, Episode 38 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Teresa Beard

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley… yay!

Nadine Vogel: All right, well welcome everyone, this is needing vogel your co host of disabled lives matter, as you know, it's more than a podcast it's a movement and what helps that movement is my fabulous co host norma Stanley.

NORMA STANLEY: Hello everybody.

Nadine Vogel: So norma I don't know about you, but our guest today, I first of all let me just say Teresa beard she is a writer a podcaster and a consultant from Western New York, but norma when you heard about the podcast.

Nadine Vogel: And the title of it.

Nadine Vogel: I don't know what your reaction was my was, and this, this is some cool sh--t.

NORMA STANLEY: Okay, okay. Well that sounded very cool to me too.

Nadine Vogel: yeah so um now that we've gotten everyone to wonder well what is the name of her podcast it is sh--t that scares me.

Nadine Vogel: Some people that alone is going to be scary so welcome to teresa how are you.

Teresa Beard: I am so great Thank you so much for letting me be here, this is exciting.

Nadine Vogel: Absolutely so well you know, obviously that's the elephant in the room, so let's start with.

Nadine Vogel: What the podcast is about, and why you called it, that.

Teresa Beard: Well, so the podcast is literally about sh--t that scares me um I have been a lifelong.

Teresa Beard: fan, how you know how to fascination with things like the paranormal super supernatural like I can remember, being in first and second grade and being like obsessed with Halloween and wanting to learn about ghosts and all that good stuff so.

Teresa Beard: That has carried me through my entire life i'm you know I just turned 39 so uh.

Teresa Beard: I when I thought about starting a podcast and also because.

Teresa Beard: paranormal and supernatural podcasts are the ones that I listened to the most I started thinking about like.

Teresa Beard: All the stories that you hear on paranormal and supernatural pa podcasts and even true crime and they're all kind of the same, which you know is great, because I only have to have listen to them when i'm listening, I can multitask, but I also is kind of like well.

Teresa Beard: it's a big wide world and there's so much other scary stuff in the world, and not just like oh it's a ghost and no it's an alien but like how about.

Teresa Beard: The fact that you can go to work one day or go to school, one day, and not come home or.

Teresa Beard: You know, existing in the world as a disabled person is terrifying.

Teresa Beard: So there's all these other things, and you know how do you incorporate all of these scary things into one sort of neat package and it just became sh--t that scares me.

Nadine Vogel: So we. used to have someone at.

Nadine Vogel: springboard who used to you know, when there was a lot of crazy work, you would say you know, is the scary pile right.

Teresa Beard: yeah.

Nadine Vogel: And I think that this is something bigger now you know you mentioned that you know living in a world as someone with a disability is scarier certainly can be scary so tell us a little bit about that, and your disability.

Teresa Beard: Oh wow um so I was born with a disability, I have a birth defect called.

Teresa Beard: chiari malformation and there's a bunch of different types, I have one of the less severe types.

Teresa Beard: This is the same birth defect that causes like spina bifida if you guys know what that is um.

Teresa Beard: You know little kids being born with holes in their spines is is a more severe form of this but, like you know growing up, I wasn't actually diagnosed until I was 16 or 17

Nadine Vogel: oh wow.

Teresa Beard: um which is you know pretty common for this birth fact and.

Teresa Beard: My mom found out that she also has it when I was diagnosed she was in her early 40s at the time, so you know I spent the formative years of my life like.

Teresa Beard: Having these horrible migraines and falling down all the time, and all these other things that like nobody knew why so they just kind of like ignored it.

Teresa Beard: And that.

Teresa Beard: was like my I never thought of being a person who's disabled, so it was never.

Teresa Beard: I just had to find ways to exist in a world that like.

Teresa Beard: wasn't here for my particular like i'm also very short i'm four foot 11.

Teresa Beard: I haven't grown I joke, since the seventh grade so like that is part of my disability too so.

Teresa Beard: i've always existed in a world that was not meant for people like me.

Nadine Vogel: mm hmm.

Teresa Beard: And that.

Teresa Beard: has been.

Teresa Beard: I mean.

Teresa Beard: I don't know any different so it's not like I had to learn to to get along like that, but when I really think about all the things that I have to do to compensate to like work a real job and and have all the go to school and.

Teresa Beard: it's sort of staggering to me what I what I always accepted as normal that other people didn't have to deal with so.

Teresa Beard: But in addition to like this birth defect, I have it causes all these other things like chronic pain and chronic migraines and all these things that can be really debilitating.

Teresa Beard: That you know you have to fight with doctors to get them to listen to you and.

Teresa Beard: You know it's very easy for them once they find out that I have chiari for them to just blow everything else off as oh it's it's just another symptom of this illness that you've had so you're born so. yeah.

Nadine Vogel: so what would you say you wish, you know what do you want people to understand the most about.

Nadine Vogel: I would say your disability and in your disability, you know is very much invisible right unless and until it becomes visible right, so what would you say that you wish people understood about invisible disabilities, probably in general and then your specific illness.

Teresa Beard: um. Just because I don't look sick doesn't mean i'm not, which is, I think, really common among people with invisible disabilities like but also just because i'm okay in this moment doesn't mean that an hour from now I won't be flat on my back with a migraine.

Teresa Beard: Or that.

Teresa Beard: Tomorrow i'll still be okay.

Teresa Beard: that's a big one, because.

Teresa Beard: Even our current very broken disability system struggles with that.

Teresa Beard: Because it's like I am today very functional and very capable of like working a full time job, and you know going grocery shopping and all these other things, but.

Teresa Beard: Tomorrow, a week from now, a month from now, I might not be so i'm not you know right now clinically disabled, but I also not fully functional so that's The thing that I.

Teresa Beard: want people to understand more than they currently do and it's not just like people with my illness my best friend has an illness called charcot marie tooth.

Nadine Vogel: mm hmm.

Teresa Beard: And she actually works for the national organization for cmt now and same thing if she didn't work for the nonprofit for her disability.

Teresa Beard: She would have to fight every single day to get people to take her seriously as being disabled so.

Nadine Vogel: And I think you're right those things are scary. right.

Teresa Beard: yeah.

Nadine Vogel: they're scary to hear about.

Nadine Vogel: Very scary to live with which I guess goes back to your purpose for starting the podcast like you said it's not all about ghosts and goblins right it's about real life, I mean norma you know you and I have talked about you know, having adult daughters with disabilities, you know.

NORMA STANLEY: Yep.

Nadine Vogel: We get scared to death on a lot of things.

NORMA STANLEY: So many things.

Nadine Vogel: There's some scary crap out there for us too.

Teresa Beard: yeah and I think I mean my mom too like if she didn't have the same types of disabilities, that I do um she would just be beside herself with panic like constantly but.

Nadine Vogel. yes.

Teresa Beard: You know, but because she has that Frame of Reference she's a little more chilled out about it, I think.

Nadine Vogel: So I'm curious and in you know, norma, you and I talk often about this balance and the balance, they always say it's not work life balance is integration.

Nadine Vogel: right but i'm curious for you Teresa as as someone with this disability that one day it is, and when they it's not kind of thing, how do you juggle job and life and projects and and not knowing what tomorrow, may be, how do you balance all of that.

Teresa Beard: um it's really freaking difficult.

Teresa Beard: Until about six months ago I worked like a standard full time job I worked for a dating APP I was extremely lucky because that job had always been remote um I started there in 2015 and was remote the whole time so.

Teresa Beard: At the time that I got that job I was just starting to figure out that I need to prioritize where my energy is spent.

Teresa Beard: And the way that I put it is like.

Teresa Beard: I start out every day with like a half tank of gas or less so I need to prioritize where that gas where that fuel goes.

Nadine Vogel: Got it.

Teresa Beard: And, if I can cut out things like even excuse me like driving to a job, a commute takes that emotional physical fuel for me i'm getting ready in the morning, there were days when I was like I can either shower or I can start work on time.

Nadine Vogel: Right, right.

Teresa Beard: Things that you can't really do when you have a traditional job so now.

Teresa Beard: That job got to be too much for me, because it was very demanding and very stressful and so now, I still have to prioritize where my energy goes but i'm working for myself, so that gives me a lot more flexibility.

Teresa Beard: Luckily, I have the kinds of skills that lend themselves to being self employed.

Teresa Beard: With a you know modicum of discipline that I learned from working remotely.

Teresa Beard: I can't say that I have much but.

Teresa Beard: um but also I.

Teresa Beard: out of necessity, I get groceries delivered and I.

Teresa Beard: have somebody come in and clean my house a couple times a month to do the deep clean, because if i'm spending my energy on a grocery trip or you know washing my baseboards.

Teresa Beard: i'm going to do nothing else that day

Nadine Vogel: Right, right.

Teresa Beard: So that's I that's been my biggest challenge to is.

Teresa Beard: relearning how to prioritize my energy.

Teresa Beard: Not just my time.

Nadine Vogel: yep well you know what's interesting about this, because I was going to ask a question Norma I often talk about like you know self care.

Nadine Vogel: Right and how to practice self care.

Nadine Vogel: And you know, certainly someone adults with disabilities folks experiencing mental health related issues.

Nadine Vogel: that's a big deal right for special needs parents like norma you know sierra is in a wheelchair, and you know sierra's amazing but The thing is, is that she relies on you right to take care of her.

NORMA STANLEY: Totally.

Nadine Vogel: So there's this issue of self care and what I what I love hearing about what you're saying Teresa is that it's really taking a step back and understanding yourself.

Teresa Beard: Yes.

Nadine Vogel: And accepting and embracing who you are like you said, your energy level what you can do instead of fighting it.

Nadine Vogel: and saying, I know I you know I start with half a tank but i'm just going to work as if I had a full tank, no matter what right that that's not self care so.

Nadine Vogel: It sounds to me like the way you've been successful and certainly you are successful and balance everything really has to do with your acknowledgement of how you're feeling and your self care, I could gather.

Teresa Beard: Yes 100% and it has taken so long to get to the point where i'm not like being super harsh on myself for not being able to do the same things that quote unquote normal people can do like.

Teresa Beard: I have a fiance who is amazing and wonderful, but able bodied and doesn't have health problems and whatever so I.

Teresa Beard: Even up until like four or five years ago would browbeat myself into Okay, well, I have to go to the grocery store, I have to do this. I have to do this.

Nadine Vogel: right.

Teresa Beard: Instead of acknowledging that my time and energy is more valuable.

Teresa Beard: Like literally and monetary more.

Teresa Beard: Valuable than being put elsewhere.

Nadine Vogel: what's your worth.

Teresa Beard: Exactly and like you know spending the extra 10 or 15 bucks to get my groceries delivered because it's really ultimately all it costs, I'm over going to the grocery store.

Nadine Vogel: I hate grocery shopping.

Nadine Vogel: Can we just say I hate grocery shopping.

Teresa Beard: I like going to the grocery store when I don't need to.

Nadine Vogel: Okay, okay.

Teresa Beard: I love when I get to walk around.

Nadine Vogel: Like walking around with a list.

Teresa Beard: yeah yeah if I only need to like do my weekly trip.

Nadine Vogel: Yeah.

Teresa Beard: because it's not just wandering around the store it's like getting this stuff to my car.

Teresa Beard: Unloading it when I get home, so I can.

Teresa Beard: it's worth that extra 10 or 15 bucks to me like.

NORMA STANLEY: I'm going to do the same thing I became sick, as a result of taking my daughter's wheelchair in and out of the car for 30 years and so i'm in the process of. and I.

NORMA STANLEY: love to go shopping I love grocery shopping I love to cook and um, but I have come to the decision that I have to do the same thing I have to step back and say is a better way that I can get the same result and not put too much wear and tear on myself, because I am getting older, you know.

Nadine Vogel: Oh but you're getting better. norma

Teresa Beard: Like a fine wine Why and cheese.

Nadine Vogel: That's right exactly exactly well on that pleasant note.

Teresa Beard: acknowledging our limitations, is what it's about.

Nadine Vogel: Well, acknowledging that side to note wine cheese and really like you know thinking for dinner now.

Nadine Vogel: let's take it let's go to commercial break and then we will come back with Teresa Teresa I I have so many more questions and I asked you i'm having so much fun talking with you so everybody stay with us don't leave we'll be back in just a minute.

Voiceover: And now it's time for a commercial break.

Voiceover: And now back to our show.

Nadine Vogel: all right Hello everyone and welcome back to the second half of today's episode of disabled lives matter.

Nadine Vogel: norma stanley and I are having this fun conversation with Theresa beard who hosts a podcast sh--t that scares me, and you know what I totally get it now.

Nadine Vogel: Before this We weren't sure, but totally get it now so Teresa before we before we broke um you were talking about you know self care and how you juggle and manage and it's being true to yourself, but you also did say something I picked up on that it kind of took you a long time to get there.

Teresa Beard: Oh yeah.

Nadine Vogel: Right, so what advice would you give your younger self whether it's about medi you know battling some of the medical issues finding treatments or just you know honoring your time and energy for yourself, for your fiance What would you tell her.

Teresa Beard: uh honestly.

Teresa Beard: Therapy, go to therapy.

Teresa Beard: Because I part and parcel of my birth defect is mental illness primarily anxiety and depression and research is fuzzy on whether.

Teresa Beard: You have mental illness, because you have chiari or, if you have mental illness, because, like people with disabilities generally have higher rates of mental illness.

Nadine Vogel: Right

Teresa Beard: um.

Teresa Beard: But for so decades of my life I fought and fought and fought I can do it myself I don't need therapy, I really bought into so much of the stigma that surrounds mental illness and mental health treatment and.

Teresa Beard: I was so much worse off for it, if I had.

Teresa Beard: You know started therapy at 17-18 years old, when I really started struggling I could have saved myself so much trouble and like just Teresa go to therapy it's fine.

Teresa Beard: you'll feel so much better afterwards.

Nadine Vogel: yeah no, I think, and I think people are, I think people are afraid of therapy, I think you know they feel like they're giving up you know there's all kinds of stigma.

Nadine Vogel: associated with mental illness and then you add will go to therapy or support groups and suddenly the stigma goes even further.

Teresa Beard: Yeah.

Nadine Vogel: Which is, which is a shame, because, like you said that that's what's helped.

Nadine Vogel: yeah and we know that that helps so many people, so if you meet someone new.

Nadine Vogel: we're not let's say on the scary sh--t podcast and we're not on the disabled lives matter podcasts but you know you're with friends, you know you're out, you meet someone do you talk about disability and, if so, in what scenario, or how do you talk about it.

Teresa Beard: And it kind of depends like i'm very open about it but.

Teresa Beard: Not like oh hi it's nice to meet you I also have a disability, I also you know i'm in therapy and take take medications but like.

Nadine Vogel: [Laughter]

Teresa Beard: Like honestly.

Teresa Beard: I did.

Teresa Beard: Once go on a first date and uh the guy was amazing I was super into him and I was just sort of starting my therapy journey, and you know I, for some reason, decided to lay it all out on the table for this dude.

Nadine Vogel: [Laughter]

Teresa Beard: we're still together for a year, so.

Nadine Vogel: What.

Teresa Beard: Well maybe you know.

Nadine Vogel: it wasn't that scary for him so okay.

Teresa Beard: that's no way.

Teresa Beard: He I was like yeah I you know i'm on medication and therapy whatever he goes oh cool meet too and with.

[Laughter]

Teresa Beard: A whole thing.

Nadine Vogel: The new me too movement.

Teresa Beard: Right yeah yeah and like.

Nadine Vogel: The real life version.

Teresa Beard: The the transparency was really fantastic because, like first dates are so annoying i'm really glad that I haven't been on one in a really long time, but like.

Teresa Beard: I don't ever want people to feel like they're meeting my PR representative so with anybody at this point, you know if it comes up I talked about it.

Teresa Beard: You know it's it's, a thing that I am.

Teresa Beard: Very over my shame of.

Nadine Vogel: Right, right.

Teresa Beard: That shame lasted way too long about my disability my mental health, the works so i'm very, very open about it now, but not.

Nadine Vogel: Well it's interesting too, because you know, like you said, your job was remote.

Nadine Vogel: So you weren't sitting in an office in a location, with a lot of other people and Norma I you know we talked to folks all the time that work in corporations or.

Nadine Vogel: or in a retail environment and they're surrounded by people and they go through this issue of.

Nadine Vogel: Do I disclose do I not disclose what do I say, is it hurtful is it helpful and that alone creates all kinds of anxiety.

Teresa Beard: Yeah.

Nadine Vogel: If you will, right and it just in my opinion, just takes it to a whole nother level so.

Teresa Beard: Yeah.

Nadine Vogel: I just.

Nadine Vogel: I love how you've just come to terms but not come to terms in terms of a why me come to terms with this just who I am i'm still going to be the best and successful and do all these crazy wild things it's just who I am.

Teresa Beard: yeah.

Teresa Beard: Well, and it's funny that you mentioned work because I got insanely lucky with my.

Teresa Beard: Previous job, the people that I worked with my management, because we all.

Teresa Beard: We worked in an industry that is very niche and can be very stressful our primary responsibilities were like keeping people on our website safe.

Teresa Beard: From scammers.

Teresa Beard: or criminals or.

Teresa Beard: Some of the darker aspects of online dating.

Teresa Beard: And we joke that we're just a bunch of like introverted weirdos trying to do good in the world, and so there were a lot of people like me they were other disabled people.

Teresa Beard: There were.

Teresa Beard: people with mental health challenges people you know my manager for six years, almost has chronic fatigue and used to work in like high powered corporate jobs, he was a CEO and all the stuff that he got sick and ended up.

Teresa Beard: joining this company and working in his capacity that he could would CFS and it just I was so lucky to be surrounded by.

Teresa Beard: Other people with the same kinds of challenges.

Nadine Vogel: Yeah.

Teresa Beard: And I think that if I hadn't and if they hadn't been so open about it, it I would be in a very different place in my my journey now.

NORMA STANLEY: able to find your tribe.

Teresa Beard: Yes, and so so randomly because we had people on the west coast people in Texas my manager with CFS is in Canada, like all these people from all over the US and Canada coming together totally randomly like.

Teresa Beard: How my.

Teresa Beard: former director put together this team, I will never understand.

Teresa Beard: Because we just they were very much my tribe and very much still our other some of my closest friends, you know we don't talk every day anymore.

Nadine Vogel: That's great.

NORMA STANLEY: It is

Nadine Vogel: so if we continue on the scary.thing.

Nadine Vogel: what's the scariest thing ever happened to you.

Teresa Beard: Oh i'm.

Teresa Beard: crap.

Teresa Beard: Honestly uh some of the situations, I found myself in in my younger days when I was online dating.

Teresa Beard: were absolutely terrifying and I was like a series of very stupid decisions on my part that led to some very scary situations, which is part of why I was so passionate about the job that I then did later.

Teresa Beard: i'm trying to prevent those same situations from happening to other people um the scariest situations that i've ever been in in my life have always been with other humans and never with you know go Sir aliens do scare the crap out of me.

Teresa Beard: But i've never met one.

Nadine Vogel: You gotta see right here. yeah.

Teresa Beard: I don't know what it is about aliens man that's, just like the we I think we all have our like paranormal thing that like we don't want to talk about because it's just scary.

Nadine Vogel: Right. right.

Teresa Beard: For me it's aliens.

Nadine Vogel: No, I hear you and you know it's It is interesting, because I do just my personal opinion, and this is it you know I get teased a lot about this, my husband, I had been together since we were 14 years old, when I talk about dating you know people like yeah, what do you know.

Nadine Vogel: yeah right I you know, but when I when I think about online dating and both my daughters.

Nadine Vogel: date from online it just that scares the bejesus out of.

NORMA STANLEY: you and me both.

Nadine Vogel: yeah and.

Nadine Vogel: Adding with my older daughter, in particular, her disability.

Nadine Vogel: It really scares the crap out of me.

Nadine Vogel: And you know it just It just seems to be the way everybody does it these days.

Teresa Beard: yeah and it's a it's an interesting thing because I was 18-19 years old at the real dawn of the whole online dating thing in the early 2000s.

Teresa Beard: And like that's how I have always met my partners and, like my now ex husband and all my significant relationships have been people that I met online.

Teresa Beard: And for me, I am also really good at sussing out who is.

Teresa Beard: not great.

Teresa Beard: From like photos and.

Teresa Beard: essays and stuff like.

Teresa Beard: Especially now, after being you know elbows deep.

Teresa Beard: In that world for six years, but to me it was always like online shopping like you can go on Amazon and put in all these filters and.

Teresa Beard: You know these websites will spit out your options for who you can date that's I never got the same kind of sense about people that I met in real life that I did with people that I met on the internet.

Nadine Vogel: interesting.

NORMA STANLEY: i'll probably have to get some some tips from you about how to date online.

NORMA STANLEY: You know i'm just one of those people that if I had to go online, I may never date again in life.

NORMA STANLEY: Just can't I can't see it I can't see it but.

Teresa Beard: it's it's like I mean like i've been you know people have tried to pick me up in bars and whatever has happened to everybody, but like.

Teresa Beard: It like that was always the thing that I found so unbelievably sketchy like the thing that always freaked me out the most was like you'd walk into a public place and some dude would be.

Teresa Beard: up on you like wanting to.

Teresa Beard: get your number and i'm like who are you i'm trying to have a drink with my friend, can you please leave like.

Nadine Vogel: Right I know, I just it's true it's true again I wasn't in that world, so yeah okay.

Teresa Beard: yeah.

Nadine Vogel: It still scares the bejesus out of me.

Teresa Beard: It scares my mom too like you know, especially before I started working in online dating my mom would be like, are you out of your mind you met someone on the internet.

Nadine Vogel: Right, right.

Nadine Vogel: Well, I have my girls put on what is it it's like the find my phone says, I like I can see where they are and know where they are it's not now like creepy like i'm not following around all the time, but if they go out like I just kind of want to know some stuff.

Teresa Beard: Yeah.

Nadine Vogel: So I can you know if anything happens, but anyway, I you know this has been amazing amazing interview I am just in love with you this.

Nadine Vogel: I could talk to you all day, unfortunately, we are out of time, so one last question, I would love to ask and norma you may have one as well, I would just like to know what do you consider your superpower, because I think you have a lot, but I want to hear what you think.

Teresa Beard: What my current superpower is.

Teresa Beard: is I think i'm easy to talk to people find me very easy to talk to, and like all.

Teresa Beard: That yeah all facets of my life so.

Nadine Vogel: Okay norma I think that's definitely a superpower of her yeah.

NORMA STANLEY: yeah definitely definitely I would ask you question, it would be on online dating and what was the one tip that you would give someone who has never done it and may want to do it.

Teresa Beard: Be vigilant.

Teresa Beard: And if you get a feeling that something is not right, it probably isn't do not ignore it, listen to your intuition.

Teresa Beard: If if if somebody is telling you one thing one day and something else the next day there's a problem RUN don't listen ferrexpo nation just run.

Nadine Vogel: This run and if you, and if you if you use a wheelchair. Wheel really fast.

Teresa Beard: Yes, really quickly.

Nadine Vogel: Well, on that note, I just want to say.

Nadine Vogel: Thank you once again Teresa This is just lovely speaking with you.

Teresa Beard: Yes, you too Thank you so much for having me.

Nadine Vogel: And I you know I know that our listeners enjoyed this today, and although the name of your podcast once again for people to listen is sh--t that scares me, I think that you do anything but scare people.

Nadine Vogel: Just fabulous to thank you and for our listeners, this was another episode of disabled lives matter more than a podcast it's a movement norma.

Nadine Vogel: Thank you dear.

NORMA STANLEY: We thank you, you are lovely all the wonderful guests we keep getting so stay tuned we have a lot more coming.

Nadine Vogel: Absolutely take care, everybody bye bye.

Teresa Beard: Bye.

NORMA STANLEY: God bless.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Season 1, Episode 37 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Sue Strand

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley… yay!

Nadine Vogel: hello, and welcome everyone to another wonderful episode of disabled lives matter I am nadine vogel your one of your co host with my other Co host norma.

NORMA STANLEY: Hello everyone.

Nadine Vogel: So norma and I, you know we talk all the time about this is not just a podcast, this is a movement.

Nadine Vogel: And you our listeners are helping us to make it a movement and bring it to.

Nadine Vogel: Not just people with disabilities, but people that don't have disabilities, because that's going to help them understand our world right and understand that people's lives, including the lives of people with disabilities do matter.

Nadine Vogel: And so today's guest, I think, is going to illustrate this point and probably better than anyone sue strand. hello sue.

Sue Strand: Well hello everybody.

Sue Strand: Nadine and norma and everyone out there.

Sue Strand: who happens to be listening.

Nadine Vogel: So I want you to tell us to start off by telling us a little bit about yourself and the background and about disabled bikers what it is why you started it things like that.

Sue Strand: Well, a little bit about me.

Sue Strand: I have.

Sue Strand: my brother is the one that started this.

Nadine Vogel: And he passed away in.

Sue Strand: 2012.

Nadine Vogel: I'm sorry.

Sue Strand: And he left the company to me, and I am not a motorcycle rider, but I do understand this disability.

NORMA STANLEY: Side thing.

Sue Strand: His wife and him got into a motorcycle accident back in the late 70s, I believe it was, and she broke her back, and so my brother who built motorcycles, then.

Sue Strand: Developed how to be able to ride as a person, that is paralyzed from the waist down so he built her up a trike and then put in the wheelchair carrier so carrier so that she could join them in their rides, because that was something they were very, very passionate about.

Sue Strand: So he kind of developed.

Sue Strand: Things to work for people with disabilities, he was an amazing motorcycle builder he built motorcycles for the CEO of St jude's hospital and his wife.

Sue Strand: Yes, he was very, very good and along the lines of this he helped people that were disabled get back on the bike again.

Sue Strand: When he passed away I picked up and wanted his dream to carry on I didn't want that to die.

Sue Strand: So I have gotten in touch over the years, with many people who have products that help disabled people ride again whether they're a paraplegic.

Sue Strand: or they're just an amputee or they just have nerve problems or what getting older, getting up there, you know that kind of thing and that's basically, what I do, I like to help people find the resources to get back on the bikes awesome.

Nadine Vogel: that's just amazing I you know i've learned through my husband, in particular, that.

Nadine Vogel: When someone rides a motorcycle they are committed like they are all in right it's a lifestyle, especially you.

Sue Strand: know.

Nadine Vogel: A certain brands right like indian and Harley whatever.

Sue Strand: So.

Nadine Vogel: i've also learned that when someone becomes disabled not born disabled but but has an accident like your sister in law, did you know it's it's very difficult for them to imagine doing things that they did prior to the accident, even just basic things.

Nadine Vogel: So talk to me about you know someone becomes disabled has an accent, how do they even get their head around but they could potentially ride a motorcycle again.

Sue Strand: that's the whole it's most of what we do and what we have are for people that had never thought that they could do it again and they come upon us by accident.

Sue Strand: Ah, when they go oh my gosh you know and there's some there are some programs out there, that will help disabled people right again, for instance, if you were a vet and were injured and.

Sue Strand: In the line of duty, the vets got, had they have a program that they will pay to get you back on the bike again they will buy.

Sue Strand: upgrades every two years to put on your motorcycle and so forth, so that's one good thing and an insurance company if you're injured.

Sue Strand: In an can no longer keep your lifestyle, the way that you were doing it before your insurance will cover this and they will pay for you to get back on your bike again and the upgrades and the modifications, most people don't know that.

Sue Strand: i'm shocked.

Sue Strand: Well, they need to I mean they're they're paying for you to recover your lifestyle as close as possible, so there are programs out there and there's a lot of people who do poker runs and they dofundraisers if you're with a group of other bikers, they can put something like this together.

Sue Strand: They can make a motorcycle that was two wheels make it a trike with the trike kit and the dual brakes is up on the handlebars so you can run the front and the back breaks in one one motion.

Sue Strand: There are thumb throttles there are automatic clutches there's virtually so many different ways that we can get you back on the bike if you can still.

Sue Strand: ride a two wheel, but you just have trouble holding it up there's what's called kickstand that actually lowers down when you start to slow down and it comes up.

Sue Strand: onto the bike to keep it up right so that will help you get back on the bike that way too so there's so many different programs, and in fact I kind of forgot the question the you asked.

Nadine Vogel: I don't you know I need to because i'm so i'm so into listening to this i'm like.

Nadine Vogel: wow, so this is Marianne of products that I had no idea that exists

Sue Strand: Yes.

Nadine Vogel: That can adapt right So how do you where do these products come from are the are the brand the big motorcycle brands, you know embracing this, or is this just individuals, how do you get those parts let's start with that.

Sue Strand: The majority are individuals who have developed something either for themselves or saw the need and feel the need.

Sue Strand: larger companies like Harley they have reverse kits that are on the new bikes and stuff that will help somebody but they really don't have any products other than that and that's the whole thing so many people are. Um

Sue Strand: Not.

Sue Strand: knowing anything about this industry you look at all the motorcycle dealers, you have someone that comes in the door, and they have.

Sue Strand: A possibly a limp or they're having difficulty or they're an amputee or whatever, this is going to increase those dealerships.

Sue Strand: Sales because they can modify the bike if it's put on by a Harley dealership or a Honda dealership it does not void the warranty.

Sue Strand: So it's be included if it's put on by one of those professionals and most of the places out there don't if they just they don't know anything about it we've tried to reach out to them and, for some reason we're not getting the kind of response, but this would help everyone.

Sue Strand: Just so easy.

Nadine Vogel: Well, so oh gosh I have so many different things i'm thinking right so. there is

Nadine Vogel: NMEDA, which is the national mobility equipment dealers Association for cars way for automobiles to adapt them and have them.

Nadine Vogel: Adapting sort of in a certified way, so we know they're safe, etc, so what i'm hearing is there really isn't an equivalent of that for motorcycles at this point.

Sue Strand: Not that i've ever heard of.

Nadine Vogel: So your role, then, is in this process is really important process is what.

Sue Strand: I like to.

Sue Strand: I like to educate and try and reach out to the individuals to get ahold of if they're buying a motorcycle what we can do for them, or if they're looking for a motorcycle what we can adapt for them the modifications so it's basically not we individually, but.

Sue Strand: All of the the bike builders that are out there, the fabricators somebody that's within their area, there are certain things that we have on our website that actually.

Sue Strand: can be followed by someone, and so it doesn't cost them anything from us they're just some ideas and plans that they can use. Unfortunately this particular industry is very expensive.

Sue Strand: And that's The sad thing about it when we try and reach out to someone to make something.

Sue Strand: For us, that could be done on a regular basis, nine times out of 10 the ball gets dropped they don't go forward with it, so we have to buy what we can we have so many more ideas of what can be done if somebody is interested out there, they could make these things for customers and.

Sue Strand: and help to you know share it off with instructions, so the bike doesn't have to actually be there.

Nadine Vogel: So you have a so so disabled bikers has a collective, I guess, I would say, of individuals that can do the adaptations around the country, it sounds like.

Nadine Vogel: And then, as a result of that if people here of you have like through this podcast they will contact you and you put you kind of other connectors you put them together or help them understand how this is possible.

Sue Strand: Basically yeah but the honest thing is, we don't have a lot of people that we work with that are mechanics and so forth, if most of the motorcycle people out there have a mechanic that they go to anyway.

Sue Strand: They have someone.

Sue Strand: That they work with that person can contact us and we can tell them okay we've got this this and then since bike builder or fabricator or something they figure it out.

Sue Strand: And then they can help the customer with that we do have a few people, but not on a large scale it's mainly using your person that you already go to.

Sue Strand: or someone in your area that you can start going to that we can help with and anyone that's a custom builder should be able to figure it out pretty easily actually so.

Nadine Vogel: This is this is this is amazing to me norma I i'm just like you know i'm thinking about this and.

Nadine Vogel: If you're in general about motorcycles and then you think about this live here in general about motorcycles whoa how amazing.

NORMA STANLEY: Very cool I mean it makes me think maybe i'll get on one of those adaptable ones.

Nadine Vogel: [laughter.]

NORMA STANLEY: Me and Sierra. Do they make them for two.

Nadine Vogel: You never know.

Sue Strand: I tell you i'm with you i'm not a rider, and when I used to write on the back of my brothers, I was a little nervous, whereas.

Sue Strand: He was very cautious and very careful and there would be no need to be nervous, but when you think about all of the people out there that.

Sue Strand: don't consider a motorcycle when they're turning lanes when they're turning into something, and all of a sudden, they get hit.

Sue Strand: And then they're either dead or disabled or not, the same way that they used to be and their their bike is mangles or whatever it might be.

Sue Strand: But like I was saying, if it wasn't an accident that you're getting that cause you become disabled your insurance company or their insurance company, whoever paid for your medical bills has to pay for you to get back on your bike.

Sue Strand: And they have to pay for a bike and so forth, and so you can't just let these people go.

Sue Strand: Hold them to it, because they can they can take modifications and pay for it on a new bike and you can be back on the road again that's one thing about motorcycle riders they're just they.

Sue Strand: Being able to ride the motorcycle is everything to them, and when you take that away from them, they slowly basically just kind of sink into the distance.

Sue Strand: If they have the opportunity.

Sue Strand: Okay yeah i'm going to get a bike it's going to have a dual handbrake you'll have an auto clutch everything will be on the handlebars.

Sue Strand: or whatever it might be, we can switch around left side right side if something's not working well on their body and get them back in the wind that's amazing.

Nadine Vogel: that's something that I mean that's important on so many levels, but you know, like myself, I couldn't even imagine that this was possible, so we do need to go to commercial break as soon as we come back, though I do want to ask you about the disabled bikers initiative.

Nadine Vogel: and love to hear a love to have our listeners hear more about that so give us just one minute stay tuned everybody don't leave we'll be right back.

Voiceover: And now it's time for a commercial break.

Voiceover: And now back to our show.

Nadine Vogel: Hello everybody welcome back to today's episode of disabled lives matter Norma I today are talking with Sue strand owner of disabled bikers, first of all i'm i'm shocked at what can be done i'm shocked it if the what i've learned is how easy This can be done and.

Nadine Vogel: Without a lot of money right that insurance companies will actually help fund this so that if you are a rider or you were a rider before your accident, you can be a rider today.

Nadine Vogel: And Sue Sue you know we were talking before about how do we turn this into really an initiative that we can get the big biking brands arms and legs around, and I was, I was shocked to hear what you share with us so, can you share with our listeners how you've tried to do this.

Sue Strand: Absolutely within the past 10 years i've actually tried to contact every single Harley dealership by email and or phone in the United States, I have a full list of them, as well as in Canada and basically nothing no response they're not i'm not asking them to buy products.

Sue Strand: i'm just trying to.

Sue Strand: get them aware that if they have someone who is disabled or having just has you know little issues and stuff like that that they can ride again.

Sue Strand: And, and to be able to say to a person that walks into the dealership I know exactly where we can go, so you can get back on a bike.

Sue Strand: But no, no response, however, there has been customers who go into some Harley dealerships, for instance, and they say hey i've heard about this, can you get ahold of this company and see if you know you can get me on the win on the bike again, and they have called me.

Sue Strand: But for them to just have the information to the parts in the sales department or wherever it might be have someone and just say hey I know of a company that can help you with this and we can put it on your bike i'm not asking them to send it somewhere else i'm trying to make them. know that they can have an answer for this person.

NORMA STANLEY: But you're driving traffic to them.

NORMA STANLEY: that's interesting.

Sue Strand: yeah yeah.

Nadine Vogel: Do you think so, do you think it's an issue of they're worried about liability that if they do it, and they do it wrong that the person, you know will get hurt further I mean I don't know i'm just. speculating.

Sue Strand: Well you know.

Sue Strand: Even a brand new bike if a person doesn't know how to ride, it can get hurt as soon as they leave the parking lot, you know that. that's just a

Sue Strand: Possibility this as long as it's put on if you're bike's under warranty as long as it's put on by a Harley dealership if you've got a Harley bike a Honda dealership so forth, and so on, they put it on it's included in the warranty you don't lose anything and.

Sue Strand: it's.

Sue Strand: it's no different a modification of this is no different than putting in a handicap ramp or a handicap.

Sue Strand: bathroom it's something that should be allowed to every dealership So if you walk in and you say hey I heard about this disabled bikers place an, and I know that they have.

Sue Strand: Left sided foot controls.

Nadine Vogel: or right side.

Sue Strand: You know, whatever it might be, can you reach out to them that's perfectly fine we even helped them get a discount to.

Sue Strand: To people, we also offer a veterans discount personally and we offer anyone who belongs to motorcycle association a discount as well, so just trying to get them unfortunately most parts are very expensive.

Sue Strand: yeah and a lot of these people don't have the money for it.

Nadine Vogel: Well norma, I think you and I need to noodle on this and.

NORMA STANLEY: yeah.

Nadine Vogel: Just feel it, you know I don't know if if they're afraid of how it's going to associate with the brand I you know, I would just love to I would love to have a conversation with someone.

NORMA STANLEY: I agree.

NORMA STANLEY: And again, people have to understand that you know we're all just one incident away from being absolutely part of this Community so many opportunities for them to.

NORMA STANLEY: a leveraged by reaching out to not only the people who may need.

NORMA STANLEY: That for a family network and friends, I mean they would love that.

Nadine Vogel: But i'm wondering i'm wondering if it's not like a brand issue right.

Nadine Vogel: They don't want to have their brand associated with.

Nadine Vogel: You know you're going to get you're going to fall you're going to get disabled on your bike and ever blah blah blah right so i'm just wondering if they're trying to just be quiet about it, but having said that.

Nadine Vogel: That you know, promoting it is different than at least taking the information and saying hey we're a resource, if something happens so that's that little different, but.

NORMA STANLEY: At least be be amenable to the idea.

Nadine Vogel: is absolute just like I said, like NMEDA right.

Nadine Vogel: for cars, I mean everybody knows at some. point. they'll have an accident.

Nadine Vogel: or whatever so that's just troubling on so many levels so.

Sue Strand: It is, I've been bashing my head against the wall for 10 years trying to get them to to notice.

Nadine Vogel: I was going to say.

Nadine Vogel: No go ahead, go ahed.

Sue Strand: Well, I was just going to say we contacted Harley and they were very interested, but they wanted us to send a.

Sue Strand: will have to make at least 100,000 in one year to be considered to be somebody that they would send out to their people so.

Sue Strand: With That said, you know there's no way we can show that we make a hundred thousand dollars a year.

Sue Strand: And so we stopped with that, but we contact the individual ones, and they can contact us they have put these parts on their customers motorcycle in their shops, they are the ones that have contacted us yes it's perfectly they're happy about it.

Nadine Vogel: Okay well we're gonna have to add this list. there is more work to be done.

Sue Stand: so okay.

Nadine Vogel: So, so you know well, first let's start it is folks out there, listening to this how do they get in touch with you let's start with that.

Sue Strand: Well it's disabled, just like the word says di a ab l E D dash bikers, with an s.com and then there's contact information they're.

Nadine Vogel: Disabled bikers COM.

Sue Strand: disabled dash bikers dot com

Nadine Vogel: bikers days or disable dash bikers, yes.

Sue Strand: Thank you. So.

Nadine Vogel: You know, there was an article that that that I had seen that i'd read about what you were doing, I think the title was the road doesn't end here.

Nadine Vogel: And I love that right so thinking about this, the road doesn't end here, what do you see for the future, for the work you're doing for people with disabilities, relative to bikes, what do you see.

Sue Strand: Well we're just going to still hammer it out just try and we're there in case somebody contacts us we've tried so many different avenues but, honestly, I just want to keep my brother's dream alive that he was passionate about this and.

Sue Strand: So many people that i've spoken to a lot of them say oh my gosh I didn't know this even existed.

Sue Strand: wow you mean I can get back on my bike i've not been able to ride for 10 years you're kidding me right and it's just it's exciting so.

Sue Strand: i'll be here i'll be waiting for anyone who wants to contact us we've tried so many different ways and possibilities and it just people just are not opening up to it.

Nadine Vogel: And what about for someone who's never written before, but now they are disabled, and they would like to take up motorcycle riding as a disabled person How does that work.

Sue Strand: For the first and foremost, is to take some lessons, you need to learn how to ride a bike prop properly and in every state or every city, most of the This is very easy to do.

Sue Strand: If you that's your first and foremost, if they're disabled get a trike or buy a bike that you can afford or that you like.

Sue Strand: And then we'll get a trike kit so they take off the back wheel they put on a two wheels and and makes it into a three wheeled trike very simple if they need a wheelchair carrier, we have those.

Sue Strand: If they need the handle bars to be accessible only we can do that anything I mean, even if you're a very, very short person very short and you have trouble reaching the handlebars and the foot, yes, one there, there are ways of adapting to that as well.

Nadine Vogel: wow that's that's just amazing.

NORMA STANLEY: That's awesome.

Nadine Vogel: And so my.

Nadine Vogel: last question, because we are running out of time is you are located in South Dakota I believe you have sturgis which is like you know is a large motorcycle event.

Sue Strand: yes.

Nadine Vogel: Do you see individuals with disabilities at sturgis riding there.

Sue Strand: my brother used to go to sturgis every single year, since he was like 17 years old, and he died when he was 56 I believe so, anyway, he.

Sue Strand: He had a booth there, and he would go there every year, and he would talk to people and get involved with other companies and show them So yes, there are a lot of people out there with disabilities, that that do ride and.

Sue Strand: Many of them that that don't just show up and they walk around you know so because they don't know.

Sue Strand: That they could ride again so yeah it's and especially age wise, as we get older many things are.

Sue Strand: Not as easy as they were before you know, and so they stopped riding because of that well we've got ways to work around that too, so you know, whatever it might be let us now we'll figure it out together we'll get in touch with you and talk about what you need.

Nadine Vogel: Is this amazing, I mean norma isn't this incredible.

NORMA STANLEY: This is so awesome and I just ask any media coverage about what you guys do because I think if more people knew that you existed in with the kind of work that you're doing.

NORMA STANLEY: I think you would get a lot more, you need the visibility that's that's going to be important, and I was just wondering had there been any you know major network.

Sue Stand: No.

NORMA STANLEY: So we have to do something.

Nadine Vogel: yeah yeah yeah you know on of the things I love about these podcasts is that you know norma you and I, like we.

Nadine Vogel: We get the you know we get the pleasure and the honor of hearing about these amazing these amazing businesses and programs and thing yeah disabilities that even for us that work in this space didn't know about so.

NORMA STANLEY: yeah.

Nadine Vogel: This is terrific so Sue Thank you very much.

Nadine Vogel: Norma and I are going to noodle and figure out how to get you out there more and.

Nadine Vogel: For our listeners, we hope you enjoyed today's session, as much as we did hearing about this, if you have a disability, you know if someone that has a disability they love to ride they road before or they're just getting older and need some help.

Nadine Vogel: Please contact disabled dash bikers.com so wishing everyone a wonderful week and we'll look forward to seeing you on disabled lives matter for our next next version norma take care.

NORMA STANLEY: Thank you everybody.

Sue Strand: Bye! Thank you.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Season 1, Episode 36 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Yannick Benjamin and George Gallego

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley… yay!

Nadine Vogel: Okay Hello everyone and welcome to this episode of disabled lives matter, yes, we are a podcast but more than that, we are a movement and this movement, I am joined by my co host the amazing Norma Stanley.

NORMA STANLEY: Hello everybody.

Nadine Vogel: Hello.

Nadine Vogel: I can't believe it's November.

Nadine Vogel: Does anybody else have that shock I I know it comes every year.

Nadine Vogel: Thanksgiving comes every year, but I don't know I always seem to be surprised by it.

NORMA STANLEY: Time's has flown by this year.

Nadine Vogel: Time is flying absolutely, so we are joined by two fabulous guests, today we have Yannick Benjamin and George Gallego, I would like to start with you Yannick, and I can tell us just a little bit about who you are what you do and why you do it.

Yannick Benjamin: yeah so thank you both for having me on it's such an honor very excited but a long story short, my whole background is in the hospitality industry i'm also born and raised in New York, both of my parents.

Nadine Vogel: Woo!

NORMA STANLEY: Yay!

[Lots of laughter]

Norma Stanley: We are New Yorkers too.

Yannick Benjamin: Yeah, good okay we're like the last of the Mohicans you know what I mean. yeah but I really you know, had a really great childhood, I think, overall, I mean I grew up on 47 street and 10th avenue you know right down the block from Times Square.

Yannick Benjamin: You know, and my parents were incredibly generous and really good honest, hard working people and I just kind of followed in their footsteps they were both in the hospitality industry.

Yannick Benjamin: And that's what I wanted to do from a very early age and basically.

Yannick Benjamin: I was able bodied working in restaurants loving every minute of it and in 2003 I was in a car accident that left me permanently paralyzed but really through the support.

Yannick Benjamin: Through the love through the just the motivation that I was surrounded by was able to continue to pursue.

Yannick Benjamin: That objective my dream of working in restaurants working in hospitality and and you know co founding a restaurant that I currently have.

Yannick Benjamin: With George Gallego, and so I would be I would I would be the biggest biggest liar to say I did this on my own, I was very blessed to be surrounded by so many great people.

Nadine Vogel: And, and the name of the restaurant is Contento. yes.

Yannick Benjamin: Contento. exactly correct.

Nadine Vogel: In East Harlem I think right.

Yannick Benjamin: that's right 88 East 111 street between Park and Madison.

NORMA STANLEY: that's where I used to live.

Nadine Vogel: To all our listening listeners, this is where you guys need to go right.

NORMA STANLEY: Awesome.

Nadine Vogel: This is where you need to do and you're also the Co founder I think of a program called Wine on Wheels.

Yannick Benjamin: Correct correct and so Wine of Wheels our initiative is really to bring awareness raise money, especially our main initiative is really to kind of.

Yannick Benjamin: You know, bring awareness, to the hospitality industry about inclusivity about breaking barriers, hopefully, within the next few years, along with George Gallego i'm really trying to see.

Yannick Benjamin: You know, restaurants, hotels in any other forms of hospitality businesses to employ more people with disabilities and to help them along the way, as well.

Yannick Benjamin: And that's really the goal and the objective and then also to raise money for programs, like the Access Project that George Diego will tell you more about shortly.

Nadine Vogel: Excellent excellent, and I know that for both of you, your tagline you put in places "access for all," and I, you know that says it all right. I think that says it all.

Nadine Vogel: And, and you know I love I love Yannick that as a sommelier.

Yannick Benjamin: I finally got that right.

Nadine Vogel: i'm feeling you take it you've taken this background that you have and its talent and turned it into something that not only is good for people of all walks of life, but especially for individuals with disabilities, which.

Nadine Vogel: And it was really important we always say you know disabled lives really do matter well.

Yannick Benjamin: sure.

Nadine Vogel: Is this is it right so George tell us a little bit about your background and what you're doing.

George G.: you're so born and raised in New York.

Nadine Vogel: Woo!

George G.: we're all native new yorkers.

George G.: And and really raised and raised in brooklyn in williamsburg a which has evolved quite a bit, just like East Harlem has come a very long way from from word was back in the days.

NORMA STANLEY: Yes.

Nadine Vogel: I'm a Bronx girl.

George G.: All good. Bronx, Brooklyn, Manhattan.

George G.: Queens we're all new Yorkers so it's all good so as far as as far as disabilities concern I wasn't born with a disability, I, too, had an accident which caused me to become spinal cord injured.

George G.: I fell from a height equivalent to three stories while working landed on my back from the impact I severed my spinal cord.

George G.: So both Yannick and I, and I are spinal cord injured his level is a little higher than mine.

George G.: I am a T-10, T-11 I think Yannick you're a.

Yannick Benjamin: T-six.

George G.: T-six Okay, which which basically the so the main there's a difference in in everyone and every disability that everyone has experienced, but the difference between Yannick and I is basically.

George G.: The abs right, I may have a few more abs then Yannick is his injury starts from the chest upward and mine actually starts from the naval upward.

Yannick Benjamin: much, much better looking stomach than I do you know I got that little kangaroo pouch you know.

George G.: You know you look good.

George G.: so late in life really was extremely challenging after my injury, because I went from a very active lifestyle to live in a very sedentary lifestyle, I went from 160, 170 pounds up to 350 pounds.

George G.: And yeah and that's that's what happens when you rely on pain meds to deal with any any nerve issues that you may have, as well as spasms and pain in general.

George G.: So, but it took me 10 years to actually turn that around once I realized that my life was heading like quickly in a downward spiral.

George G.: I decided to first start working on myself physically, so I started exercising doing simple things and then over time, I was able to drop the weight on back down to about one well i'm I weighed less than I did before. So i'm probably at 155.

Nadine Vogel: Excellent.

George G.: And.

Nadine Vogel: Congratulations.

George G.: Thank you, thank you and I realized that getting physical getting involved in athletics.

George G.: played a huge role in my ability to be able to bounce back so primarily because once I was able to embrace my physical self everything else.

George G.: flowed after that I was able to embrace myself mentally emotionally and just move onward and upward so as far as as far as my work history is concerned, as I worked, I was in a newspaper industry, I won't name the company, I worked for cause they were horrible after my injury.

George G.: But yeah but everything changes after injury, you find yourself reinventing yourself not just once but over and over and over and if you're able to accept the fact that life will just continue to evolve, then, then you can live life to the fullest.

George G.: As far as Contento is concerned, I have never been involved in the hospitality industry in a way that Yannick was.

George G.: Never worked in a restaurant, although I love to visit restaurants.

George G.: The but the work that I have done and Yannick really helped me realize that, although I didn't work directly in the hospitality world i've always been.

George G.: involved in in giving and transfer helping transform lives, so, in a sense, thanks to the Yannick, I was able to view this through a different lens.

George G.: So the work that i've done in helping others and helping people find their path in life was similar to what Yannick has been doing all his life in the hospitality industry right, it was really all about making feel making folks feel comfortable.

George G.: With themselves and with with their surroundings and helping them really just move forward, you know embrace and move on.

Nadine Vogel: Excellent. Thank you i'm curious I mean, I have some very specific questions for both of you or relative to the business, but I am curious how did the two of you come together.

George G.: yeah. It's a long story. So.

[Laughter]

George G.: yeah no we We will give you the condensed version.

Nadine Vogel: Okay.

George G.: So so i've been injured for almost 30 years now and Yannick and Yannick has you're going on 18 years.

Yannick Benjamin: eighteen correct correct exactly.

George G.: Exactly so when.

George G.: So when you Yannick was first injured, I was part of a mentoring program and that's how we initially connected, I always Yannick and I will connected through the mentoring program at Mount Sinai hospital.

George G.: and also through.

George G.: The New York City chapter of the United spinal association and our our connection our friendship had evolved from that point onward.

Nadine Vogel: Very cool really yeah it's it's it's a great story and we haven't even started with the story yet oh my gosh.

Nadine Vogel: So, so you know talk to us a little bit about what are the challenges that you guys face having a disability owned restaurant, you know I mean, I think I think restaurant ownership is tough, no matter what.

Nadine Vogel: We add covid to it, of late it got tougher, but I suspect that you know, having disabilities has made it if not tougher at least very different so i'd love to hear about that.

Yannick Benjamin: Well, I mean I you know i'll speak for myself, you know I think what what's really important to emphasize is that exactly what George just said, because he's in a wheelchair and I'm in a wheelchair.

Yannick Benjamin: We, we do have different needs and we we do things differently, based on our level of injury and this applies to people in the low vision community.

Yannick Benjamin: Hard of Hearing everyone's got different needs, so I think that's you know one thing that we really have to emphasize, you know so it's a very broad category.

Yannick Benjamin: As for me, you know it's been really a blessing in disguise, in the best possible way, and when I tell you that, Contento.

Yannick Benjamin: Is a beast I say that, in the most polite way it is incredibly busy, and you know for listen i'm you know i'm a 44 year old guy right and.

Yannick Benjamin: For an able body person working in a place that's it's physically demanding you've got to move, you know even for myself, you know I worked out every day I take care of myself and eat right, you know.

Yannick Benjamin: and physically like at the end of the day, I am like wiped you know and and not only that, but um you know you've got to be on right, so you know that that emotional connection you've got to constantly be on your.

Yannick Benjamin: On your in my case, not on my toes but on my wheels right and so that that can be really you know.

Yannick Benjamin: You know draining mentally and then and then physically just you know bending here bending there all of that, you know what what what might be easier for an able body person when they're serving wine.

Yannick Benjamin: For me it's really taking that effort so that, from a personal standpoint um you know takes a lot out, you know it is, it is exhausting and I would I would never try to.

Yannick Benjamin: camouflage and pretend that i'm Superman that that oh yeah yeah yeah i'm doing it just like everybody know it takes a lot for sure.

Nadine Vogel: Right, right. No, I get it so i'm curious, if you think about you know people that you admire and then this goes to both of you, you know it's there's someone out there, that you say I just I really admired the most.

Yannick Benjamin: I look, I mean George George there I guess.

Nadine Vogel: George.

Yannick Benjamin: All right, I mean yeah I mean listen, first and foremost, I think you know, obviously the the person that the two people that I admire the most who definitely my parents.

Yannick Benjamin: I am, where I am today because of them my value system is based on who they are, and what they taught me and and i'm just simply practicing what I learned from them.

Yannick Benjamin: But I was also very much influenced by the Christian brothers that were teachers in my elementary school.

Yannick Benjamin: So I do have a deep admiration for some of them that I grew up with you know.

Yannick Benjamin: That taught me, I mean, obviously we already know we don't have to go too deep but there's certainly a lot a lot, a lot of things that I definitely disagree with.

Yannick Benjamin: The in the Catholic religion but as far as who they were and how they.

Yannick Benjamin: empowered me and how they influenced me I I owe a great deal to them, I always admired their servitude the fact that they sacrifice the greater good to have an approach of family or being in a relationship.

Yannick Benjamin: So yeah I would say, those are people that I definitely admire there's a gentleman to that I worked with at Le Cirque, which is a very famous restaurant that's now close his name is.

Yannick Benjamin: Ciro Marchioni and I often find myself thinking about him every day, a lot, you know and he's someone that I definitely deeply admired as well.

Nadine Vogel: And it was that, because of what he built and what he did in the industry.

Yannick Benjamin: yeah I mean I think he was like you know, Mr cool right.

Yannick Benjamin: And I I always loved me he just simply had that kind of cool factor that it factor and.

Yannick Benjamin: You know I met him when I was a very young kid getting into this industry and Le Cirque at that time was the Center of the universe and.

Yannick Benjamin: He just kind of invited me in that world and I wouldn't say that he he really grabbed me my my my my by my hand but he you know, without he in directly impacted my life.

Yannick Benjamin: Very much to who I am today So yes, yes, someone that I, I always think about.

Nadine Vogel: So, so when we think about you know Norma and I talked about that you know will go out to restaurants, will take our daughters, who have disabilities will go out with us.

Nadine Vogel: You know I remember when my older daughter was younger and she was being fed through G tube and we're feeding her in the middle of a restaurant right, you know lots lots of issues, so I certainly understand the importance of creating this this culture of inclusivity in the. Industry.

Nadine Vogel: But maybe you could talk to us about you know how do we get from here to there, because if.

Nadine Vogel: there's a lot right, this is the employees, like you talked about.

Nadine Vogel: and hiring people in the hospitality industry that had disabilities but it's also how we serve people with disabilities.

Yannick Benjamin: correct and I think that's a great question and it's a it's a really important topic right because it's.

Yannick Benjamin: First and foremost, you can create a restaurant or a business that has perfect universal design that's barrier free.

Yannick Benjamin: But if you don't have that culture of empathy if you don't have that culture of welcoming and just you know have your stuff educated on how to deal with.

Yannick Benjamin: People of all different backgrounds than that universal design is useless right, it means absolutely nothing.

Yannick Benjamin: And so I think you know one obviously that continuation of education, the other side, and when I say, the other side, meaning people that work in the industry.

Yannick Benjamin: In the restaurant and the hotel and any other business, the ability to be able to listen, the ability to be able to see like I don't know, and I want to learn, please teach me.

Yannick Benjamin: With That being said, I know, when I go to a restaurant i'm a full time wheelchair user i'm paralyzed from the waist down.

Yannick Benjamin: I get it, I understand that I can't expect everybody to possibly know what I need right, so I feel like as long as I ate they have this energy of like him, and we are so happy to have you here.

Yannick Benjamin: Is there anything that we can do to make you feel comfortable, are there any use simple terminology terminology, but.

Yannick Benjamin: You know I know that I can't go in there, thinking that they are going to know everything that I need so I feel like I have a responsibility, as someone with a disability to just simply guide them and direct them.

Yannick Benjamin: And that's all it takes and just kind of talk to them and they appreciate it, I feel like sometimes.

Yannick Benjamin: We may be in our Community, and when I say our Community, people with disabilities, we often expect the other side to know things.

Yannick Benjamin: And you know what we do have a we have a responsibility, one to advocate for ourselves, but let's reach over the aisle.

Yannick Benjamin: And let let's use that opportunity to teach them and that's what it comes down to so you know not only just beat not only advocacy but also being an ambassador for the disability community, we have to also do that as well. Does that answer your question.

Nadine Vogel: Yeah absolutely it's um and you right there's so much there because you know someone can come in the restaurant, who is blind, so we can come in who's a wheelchair users someone can come in who's death, I mean you know.

Nadine Vogel: there's all different disabilities, but I think to your point it's it's a it's two parts right it's you being willing and able to convey your needs but it's, on the other side for the restaurant owner and management to be willing to receive the information.

Yannick Benjamin: Yes

Nadine Vogel: And accommodate as needed.

Nadine Vogel: And I think that last part is the part that many of us struggle with. Sometimes.

Yannick Benjamin: Yes yeah no no absolutely I mean listen it's up I think it's a it's a constant.

Yannick Benjamin: evolution, which is great I think we're definitely years behind, maybe even decades behind on where we should be with accommodations for people with disabilities, of all backgrounds intellectual physical neurological you name it.

Yannick Benjamin: But I do think that things have started to happen, I mean listen um and, as I say, always and George as well there's there's over 60 million Americans with disabilities, I think it's a one in four and so those are numbers that we can no longer ignore because we have to take seriously.

Yannick Benjamin: You know so that's that's where we're at right now, and I think that people that that own restaurants people that work in restaurants or any kind of hospitality, outlet.

Yannick Benjamin: has to say hey you know, we need to figure this out, because there are people that have a disability that want to spend money.

Yannick Benjamin: But they're not going out they're not going out because.

Yannick Benjamin: There is fear of rejection this fear of like i'm going to go there and they're going to make me feel uncomfortable so what may seem like an expensive concept to make your restaurant accessible but long term your return on investment.

Yannick Benjamin: is going to be there and we have seen that at Contento and i'll tell you what I want to make this very clear, you know, first and foremost foremost we're you know we're a small restaurant right.

Yannick Benjamin: We really are ideally you know if we could, if we had the money we had the resources we would have a restaurant that's 5000 square feet.

Yannick Benjamin: and tables be spaced out, we will do the whole shebang that's not the reality of it, but the most important thing is creating a culture of.

Yannick Benjamin: have been inviting have an empathy and saying hey we are here for you just tell us what you need to do what you need and we're going to make it happen.

Nadine Vogel: Right right absolutely and norma, I mean Sierra your daughter she's she uses a wheelchair, so I mean you live this every day right.

NORMA STANLEY: Absolutely, and I just love the fact that you know what he said, where it is the onus is on us to as customers.

NORMA STANLEY: With them family members with wheelchairs or individuals who may be using wheelchairs, or may have a disability, just to kind of I guess put pride aside and say you know what I could use your help in this area.

NORMA STANLEY: In your.

NORMA STANLEY: establishment to make you more comfortable just something that I guess you know we don't do, and we do probably expect more of the.

Yannick Benjamin. Yes.

NORMA STANLEY: People at the restaurant or at the establishment and they may actually prepared.

NORMA STANLEY: right to be able to address, so this a two-way street um but at the same time, you know I just think I love this and to be able to eat at your restaurant next time I'm in New York.

NORMA STANLEY: That's my old neighborhood.

Nadine Vogel: Well you know. It's it's one of these things you know i've been to many restaurants and I go to use the restroom and they'll say yes, you know there is an accessible restroom, but then there's like a high chair, or something blocking.

NORMA STANLEY: Oh.

Nadine Vogel: You have to.

Nadine Vogel: navigate around you can't get in there and i'm thinking really.

Nadine Vogel: You know, and I and i'm.

Nadine Vogel: I have no issue saying something and and I,

Yanick Benjamin: Good.

Nadine Vogel: you know I say something all they time, but you know they look at me like I have four heads it it's just.

Nadine Vogel: Yes, really I just makes me makes me crazy well, we need, we must, I could well I don't even want to stop, but we need to take a short commercial break.

Nadine Vogel: But when we come back, we are going to talk more with Yannick Benjamin and with George Gallego and we will find George we may have lost him oh.

Nadine Vogel: So stay tuned everybody don't go anywhere.

Voiceover: And now it's time for a commercial break.

Voiceover: And now back to our show.

Nadine Vogel: Hello everyone and welcome back to today's episode of disabled lives matter we are here with the amazing Yannick Benjamin.

Nadine Vogel: and his business partner George Gallego and we're talking about there with sounds like an fabulous restaurant I can't wait to go Contento in East Harlem and you know.

Nadine Vogel: When we when we left before commercial break, we were talking about asking for what you need right, and you know I brought up the example of your restaurants that yeah, this is an accessible restroom you just can't get in there, but, but we have one so.

Nadine Vogel: You know it's one of these things where.

Nadine Vogel: it's what you know what does it take first and foremost, to have a great restaurant, what are the key components of having a great restaurant and then How does that change if it changes to be a great restaurant and i'm going to put this in quotes for all.

Yannick Benjamin: Right. Well, first of all, first and foremost almost i'm always shocked when I meet people that work in the hospitality industry and they tell me how they hate people.

Yannick Benjamin: Very strange thing to hear, but you, you know if you're going to be in this industry you've got to like people you've got to be able to like to interact hear their stories and and, first and foremost.

Yannick Benjamin: sort of kind of make them the priority right it's about creating experience for them now, I want to make one thing very clear, I am not I don't believe in that philosophy that the customer is always right.

NORMA STANLEY: Right.

Yannick Benjamin: I don't do that because I think that there's plenty of times, where the customer is wrong.

Yannick Benjamin: And I tell the rest of the staff at Contento that if you feel at any moment that someone is making you feel uncomfortable or being disrespectful.

Yannick Benjamin: Do not take that or let me know, and I will handle it I think that's really important especially.

Yannick Benjamin: Now that we're heading into this new era post covid you really you really have to love people, you have to be passionate about food and and and beverage.

Yannick Benjamin: And within that figure out what it would genre you really are passionate about whether it's South American Food French, Italian, whatever it is, it could be anything fast food doesn't make a difference.

Yannick Benjamin: So you you the food that you serve the beverages that you serve are all stuff that you would be willing to eat yourself and something that you would.

Yannick Benjamin: enjoy at your own home, so I think if you do that, then you've got to create an ambience I mean you can have the best, the most expensive interior designer.

Yannick Benjamin: create your restaurant, but if it doesn't have the energy and the ambiance of welcoming then it's going to be a total utter failure, and I think the best restaurants that i've ever been to sometimes they just have a very minimalist approach.

Yannick Benjamin: But when you go there it's just like it.

Yannick Benjamin: there's this energy of welcoming and love and i'm like okay that's it and I think listen Contento certainly has been able to do that for sure so you've got to be able to create that energy that's that's, the most important thing okay.

NORMA STANLEY: I agree.

Nadine Vogel: So. How did you and George actually come together to to you know, in terms of Contento, specifically like what was what was the idea.

Yannick Benjamin: yeah so George is all as he likes to describe himself and I totally agree he calls himself a social entrepreneur, you know, and it was always on the go he's got his hands in different projects, I was working you know all the time in different restaurants different hospitality establishments.

Yannick Benjamin: And George being the mentor that he is and just kind of the go getters a Yannick like why don't you work for yourself hey i'm working for other people and i'm like George this industry's, a beast.

Yannick Benjamin: It is hard like yeah I don't know.

Yannick Benjamin: Well, anyway, fast forward right down the block from where he lives because he lives on 111 between park and Madison at this in this beautiful building.

Yannick Benjamin: And there was a spot that was open, he said, I think there's something very interesting, you should come check it out and I looked at it and the rent was incredibly low was like almost like hard to believe, and he said I would love to be involved, and you know that's.

Yannick Benjamin: that's all she wrote after that.

Nadine Vogel: That that's that's that's amazing that really is I love the simplicity of that don't you norma.

NORMA STANLEY: it's the connection that's what I call it and exactly and actually my in laws live a block away.

NORMA STANLEY: From your restaurant so.

NORMA STANLEY: I will defintely be they're on 110th and.

NORMA STANLEY: park.

Yannick Benjamin: Oh well, have them come by we would love to have them. Absolutely.

NORMA STANLEY: Absolutely.

Nadine Vogel: So George. Your back yay!

George G.: I'm Back yeah so I.

George G.: So, as I mentioned earlier, I'm at the space that we're building out and my HVAC guys are here and we, the power went down temporarily I didn't realize it happened until.

George G.: The Internet and everything went down.

George G.: So we had connection, but not.

Nadine Vogel: No problem.

Nadine Vogel: So so George let me ask you this, what do you think it's going to take to get more people with disabilities in the hospitality industry.

Nadine Vogel: Because I can see so many different issues like we don't have more so, what do you think it's going to take.

George G.: So I so Yannick is going to handle one part, and together we'll handle the second part, so.

George G.: Yannick has already started the movement within the.

George G.: hospitality industry and he's got folks really accepting idea of having people with disabilities all types of disabilities within their workspace.

George G.: There are certain things as a person, as a person with a mobility impairment, that I can do.

George G.: Obviously, certain things that I cannot do and I accept that but i'm willing to do the best that I can do in those areas that I can actually maneuver.

George G.: And, and so folks within the hospitality industry are receptive to the message right, but the second part is to get folks in a disability community.

George G.: To to believe in themselves and and and realize that they can change to the point where they can actually move on in life and accepted a position and hospitality industry.

George G.: But there's so many fears involved, you know within folks in the disability Community you know people are afraid of losing their their healthcare benefits they're afraid to you to lose their.

George G.: Their fixed incomes, the SSI or the ssdI and many don't realize that that life will definitely change it become better once you actually have a sustainable income that's not a fixed income.

George G.: So, so what Yannick and I intend on doing is within within the space of Content, and also whether this new space that we're building in East Harlem.

George G.: We plan plan on utilizing both spaces to create programs to focus on on on making these changes within the minds of the folks that we're working with whether it's it's the folks in the hospitality industry or our comrades in a disability Community.

Nadine Vogel: Excellent excellent.

Nadine Vogel: I imagine is like fears of you know, even just accessibility of the kitchens right, if not, if not the the dining rooms themselves just the kitchens, because I know we have a whole team that does.

Nadine Vogel: Universal design physical accessibility audit things like that and we've gone into restaurants and we've gotten even into corporations, where they've had you know, on site cafeterias and we go into the kitchen and we look around and we're like yeah no this won't work.

Yannick Benjamin: yeah Nadine, I just want to say one thing, I think, though, I you know one thing that's a major issue, too, is if we had universal health care if we, had guaranteed like.

Yannick Benjamin: medicaid was provided just across the board, I think it would relieve some of the anxieties that that most people with disabilities have.

Yannick Benjamin: And I think one of the main issues now imagine if you're just able body right and you found yourself working at like a really good hotel company right let's say the Marriott right where they offer pretty great benefits great.

Yannick Benjamin: private insurance and you have a very intimate relationship with your Ob gyn your gynecologist your your urologist right.

Yannick Benjamin: And all of a sudden there's a new job that there's an opportunity right.

Yannick Benjamin: You may not take that job only for the fact, because the insurance that they're offering now is no longer in network with the Ob gyn the gynecologist your urologist that you've been seeing for all that time.

Yannick Benjamin: And you know the system that we have it there's a form of oppression toward with it.

Yannick Benjamin: And so that in itself is an issue, so if you if you if you rely on a home attendant to come in two hours in the morning to get you out of bed.

Yannick Benjamin: You know you're relying on 150 catheters you know now you're kind of playing with fire, because you don't know what that private insurance can do to you right you don't.

Yannick Benjamin: And so, that is the biggest issue, and so what we need to do is get really powerful voices in the hospitality industry to come together and why not get a nationalized.

Yannick Benjamin: Healthcare insurance plan, and I think if you get that locked in, I can tell you, you will see more people more.

Yannick Benjamin: Not more diverse people working in the industry, but it's still an industry that's incredibly volatile and lock structure and until we get that down I think it's going to be very complicated.

Nadine Vogel: So i'm i'm imagining that the two of you are going after Congress going after all the major industry organizations speaking at their conferences, yes.

George G.: All I wanted was to open a small restaurant that's all I wanted.

George G.: And it's now evolved into this.

George G.: This this movement, which is, which is really it's really amazing and it's not something that that we anticipated but it's the path that we're on now.

Nadine Vogel: yeah. No you guys.

Nadine Vogel: should be at these like you know industry, conferences and be talking about this right, this is.

NORMA STANLEY: I was on a recent conversation with one of the food writers for the nations restaurant news magazine, and I definitely think that y'all should have a conversation.

Nadine Vogel: Norma can you make an introduction.

NORMA STANLEY: Definitely do that I can definitely do it.

Nadine Vogel: All right, yeah we got we got to get this story out there bigger bigger, better because.

Nadine Vogel: it's that important so we've been talking about all the really cool things positive things any regrets anything you would do differently.

George G.: I. thing that.

George G.: Personally I.

George G.: We i've had so many experiences in life great experiences horrible experiences manageable experiences, but i've never been one to say that I regret any of my experiences because i'm who I am today because of the sum of all of my experience.

Nadine Vogel: So I wouldn't change it.

George G.: I would just just learn from it and keep on moving forward.

Nadine Vogel: got it okay Yannick.

Yannick Benjamin: Oh God, I mean again um what would I have done differently, I mean listen there's I think you know I certainly don't regret because I think that one thing that I will say is that.

Yannick Benjamin: There are mistakes that have been done not purposely and you learn from them and you try to improve and improve upon them, and you build upon that you know it's sort of like you know layer by layer by layer and so.

Yannick Benjamin: That that's what I I try to do I think that's what George tries to do that's what we all try to do.

George G.: Absolutely.

Yannick Benjamin: and really and that's the key.

Nadine Vogel: yeah no absolutely, so we are running out of time which is really sad because I could talk to you guys, like all day.

Nadine Vogel: um.

Nadine Vogel: Let me ask one last question, if I may, and if there's anybody dead or alive that you could sit down and have dinner with who would it be.

Yannick Benjamin: You want to go first George.

George G.: Sure, so my my father passed.

George G.: In 1990 and he hadn't never had a chance to see or experience anything that I seen and experienced so I would love to be able to bring him back.

George G.: Just so that I can show him what has become of his son and his other children and my children as well, he never had a chance to meet his grandkids, so I would love to bring them back have a sit down right like they do, and in Yannick's world, you know the mafioso guys.

George G.: Only kidding and.

George G.: You know and introduce him to my life.

George G.: and to the people that i'm surrounded by.

George G.: So, and you Yannick.

Yannick Benjamin: yeah I mean I mean someone you know kind of I i've never met my grandfather on my father's side who actually went blind.

Yannick Benjamin: In his in his 40s he was a farmer lived in the middle of the country, so not much access, but you know i'd love to have a conversation with him and and.

Yannick Benjamin: kind of like George just kind of tell him what i'm up to and and understand what his I mean you know I can't imagine what it was like being a farmer during World War one World War Two in France under the occupation.

Yannick Benjamin: and have going blind, you know, for you know so i'm sure he's got plenty of stories so yeah.

Nadine Vogel: Well, I gotta tell you my goal.

Nadine Vogel: Is next time i'm in Manhattan next time i'm up there is to have dinner with the.

Nadine Vogel: Two of you, at Contento.

Nadine Vogel: That's my goal.

Nadine Vogel: So i'd norma any any closing remarks you like to make.

NORMA STANLEY: same thing, I look forward to checking your restaurant out i'm a foodie at heart, I love to cook and I would love to know what your menus are but we're going to find that in-person.

Nadine Vogel: yeah we're gonna go check that out well George Yannick Thank you so much you so illustrate the power of disability and that disabled lives really do matter, so we know all of our listeners they're gonna be like oh my gosh when I, how do I make a reservation, how do I get there, so we.

Nadine Vogel: can't wait.

Nadine Vogel: until the crowds start coming.

Nadine Vogel: yeah look forward to staying in touch guys Thank you again so much.

NORMA STANLEY: Yes, thank you.

Yannick Benjamin: Thank you for having us.

George G.: Thank you for having us. Have a great day.

Nadine Vogel: Okay bye-bye.

NORMA STANLEY: Have a blessed day.

Yannick Benjamin: You to.

George G.: Likewise and stay safe everyone.

NORMA STANLEY: You too.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Disabled Lives Matter Season 1, Episode 35 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Kyle Maynard

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley… yay!

Nadine Vogel: Hello Hello everybody, this is nadine vogel your co host of the podcast disabled lives matter, and I am joined by my fabulous co host norma Stanley.

NORMA STANLEY: Hello everyone.

Nadine Vogel: And as norma and I always say this is much more than a podcast, this is a movement and y'all need to join this movement now.

NORMA STANLEY: Absolutely.

Nadine Vogel: Right. Well, this is going to be a really exciting episode, because we are joined by Kyle Maynard.

Nadine Vogel: kyle is well he's a lot of things he's an entrepreneur speaker best selling author he's an award winning extreme athlete because being a general it is not enough.

Nadine Vogel: And the first man to bear crawl to the top of the highest mountain in Africa mount kilimanjaro and a summit of argentina's Mount. Aconcagua, if I said that right.

Nadine Vogel: Aconcagua, if I said that right, which I think is the highest peak in both hemispheres so i'm just going to start with this um first of all Kyle I don't know how many people you really are because I don't know one person that can actually do all those things.

Nadine Vogel: [Laughter.]

Kyle Maynard: [Laughter.]

Kyle Maynard: There may be a few doppelgangers out there.

Kyle Maynard: Yeah. If I do anything too bad, then I can blame it on them.

Nadine Vogel: Oh, my gosh um so first of all talk about what is bear crawl.

Kyle Maynard: Bear crawling is basically the way that I walk.

Kyle Maynard: So I know we're recording video, but basically to give your listeners like a perspective i'd.

Kyle Maynard: I walk from like from my elbows and knees.

Kyle Maynard: And so.

Kyle Maynard: A lot of people I know with like you know in chairs and stuff like that, like you know the transfer out.

Kyle Maynard: You know, get on to a different things to climb up on different stuff for me I don't really use a chair in my house at all, so when I walk up just walking on my elbows and knees.

Nadine Vogel: Okay, so that's what that is so now, if I understood correctly, I think that you had you were born with this condition, but in your entire life you've never used any kind of prosthetics.

Kyle Maynard: I used to when I was younger.

Nadine Vogel: Okay.

Kyle Maynard: Basically um.

Kyle Maynard: I use them to help with like.

Kyle Maynard: Certain things like reaching certain things.

Nadine Vogel: Okay.

Kyle Maynard: And I still sometimes will use similar things like stools are cherries, are that kind of stuff you can jump up on countertops but the prosthetics I would use this like hooks to grab on the stuff.

Nadine Vogel: got it got it, so I am really, really height impaired just so you know, and so let me just tell you anything I can take I will take like hangers.

Nadine Vogel: And hooks and everything's just to reach things because I can't reach anything which is in no way anything like living with a disability.

Nadine Vogel: But just from a height perspective and trying to get to things I tell people all the time, like you know what do you think is typical height, because to me it always seems like it should be the jolly jolly green giant the way everybody uses things to reach you know.

Nadine Vogel: So you know you've been very focused on on living independently from the very beginning, so how does someone with with disabilities, such as the ones you have.

Nadine Vogel: Go to become like a championship wrestling I think you're a crossfit certified instructor I can't imagine doing crossfit on my best physical day.

Nadine Vogel: So, how did you get from one place to the other like what what took you there.

Kyle Maynard: Basically, it was I first fell in love with it, I found there's a video online it's a it's kind of obscure name but it's called the nasty girls.

Kyle Maynard: Okay, so there were these then it's a workout for their these three these three girls that were like Eva T was one, there was a girl named Nicole.

Kyle Maynard: Can't remember Nicole's last name.

Kyle Maynard: and annie sakamoto I think was the other.

Kyle Maynard: So I watched that video and I just fell in love with it, and I was like man, this is this awesome the sport everything about it like it was very similar to like this kind of like philosophy that I had you know, training, the wrestling stuff like that.

Nadine Vogel: growing up.

Kyle Maynard: So it was on it was yeah it was just a that's kind of where I fell in love with it, and I remember one of the girls.

Kyle Maynard: At the end of.

Kyle Maynard: The first workout.

Kyle Maynard: She cried.

Kyle Maynard: And I was like whoa you know that's that's insane that's like that level of intensity would bring somebody to that position.

Nadine Vogel: Right right, it is intense and you said you you started this very young so i'm curious from a parent perspective, how they reacted to you doing this with they nervous for you, I mean.

Nadine Vogel: I I have an adult daughter, with significant physical disabilities and I, you know would always anytime she wants to do something that I thought was a little too physical I would get so nervous.

Kyle Maynard: yeah.

Nadine Vogel: You know how did your parents react.

Kyle Maynard: I could always kind of um.

Kyle Maynard: accepted the fact that, like some of the things I wanted to do, maybe they weren't their favorite things.

Kyle Maynard: You know, stepping in a cage at MMA I think that was probably the most extreme.

Kyle Maynard: it's definitely something that was totally totally different than.

Kyle Maynard: Yes, i'd done before.

Nadine Vogel: yeah that would scare the bejesus out of me.

Nadine Vogel: So you have written a book, if I recall correctly called No Excuses, and I believe it's a New York Times bestseller um when you say no excuses talk to us what's behind that.

Kyle Maynard: Basically it's it's like the philosophy of it is, is that there's always like an excuse or reason to not do something.

Nadine Vogel: mm hmm.

Kyle Maynard: Right and there's always going to be a you know a thing that keeps us from our potential in life, and that that you know, identifying what those things are is that the first step to be able to do something about it.

Kyle Maynard: It was something that my wrestling coach came up with I didn't get the credit for it, he said he would say you know, during practices basically.

Kyle Maynard: You know kids would come up to me, complain like on my wrist hurts my leg hurts, and all that he'd say like oh kyle probably wishes that he had wrist or a leg to hurt. and.

Nadine Vogel: Right. So i'm curious you know this this story this book on and in this focus of you know no excuses you're a public speaker.

Nadine Vogel: On you speak to audiences of students of executives of other athletes, so when you when you speak to them about this and coming from the perspective of someone with a disability, how do you find the audiences react and respond to it are they different from one another, for some reason.

Kyle Maynard: yeah it's um it's kind of a wide range of different groups over the years it's been like you know that's kind of the cool thing about it so i've gotten perspective from like elementary school classrooms all the way up to fortune 500 companies, you know.

Kyle Maynard: Military special operations groups, you know wrestling teams to like NC double-A gymnastics events all kinds of stuff you know and where we met with the runway dreams right like it's a totally different thing in terms of like a fashion related.

Kyle Maynard: bank so it's it's been pretty cool that the the message itself is a seeming way sort of fairly universal one um.

Kyle Maynard: And so you know it sort of blends and lends itself to being adaptable in different groups.

Nadine Vogel: Right, right. Well you know it's just interesting because um.

Nadine Vogel: I think that people pick up on things differently right depending what their own experiences are, and so you know, we know that and we've experienced here that you know children.

Nadine Vogel: especially younger children they fear disability because it's not known to them that they don't know what to expect, and so I just wonder what they take away from that presentation from hearing you then you know someone who's 50 years old, live their life and said yeah I get it.

Kyle Maynard: yeah there's I mean definitely different different people say different things.

Kyle Maynard: I remember one one kid that stands out there was a speech in like a small mining town in West Virginia and he said afterwards, you were like talking about their dreams like what do you want to do when you grow up and said, I want to work at mcdonald's.

Kyle Maynard: And I was like.

Kyle Maynard: that's awesome wasn't what I was expecting but. You know.

Nadine Vogel: it's yeah it's interesting perspective is everything right.

Nadine Vogel: And I know, one of the groups that that you also speak with quite often, and not just speak with but you've committed time and resources to is working with wounded and recovering veterans so, can you tell us a little bit about that.

Kyle Maynard: Sure um yeah so it's been a dream of mine to you know, since I was a kid I dreamed about serving in the military that the.

Kyle Maynard: You know, for me, like the.

Kyle Maynard: The cards that I was still you know it's something that was going to be possible, so it's something that you know it's just.

Kyle Maynard: I think those those dreams have kind of changed and evolved over time and I realized that I could go and contribute in a different sort of way right.

Kyle Maynard: And I think that that sort of you know it's a similar thing that a lot of the troops have to deal with when they come back home with an injury right it's like how do they go and continue to.

Kyle Maynard: provide meaningful value and service in a way that you know after they've endured some sort of injury yeah.

Nadine Vogel: Right. And I would think that you uniquely can help them from the standpoint of you live with this your whole life right they said they've suddenly been thrown into it.

Kyle Maynard: it's a.

Kyle Maynard: it's it's a different thing, though, to I mean, given the fact that, like I have grown up.

Kyle Maynard: With it, you know they haven't.

Nadine Vogel: Right.

Kyle Maynard: So you.

Kyle Maynard: Should have seen that in the world that have disability, a lot we have different people that you know adapted to different things at different times you know, sometimes like there's injuries and you know just different life things that happen and occur.

Kyle Maynard: Even even with covid you know it's i've got a friend last night that I was texting with that literally she was saying that like she's she's having a super hard time with the like with.

Kyle Maynard: Depression and like like mental health stuff as a consequence of covid I was like wow I never really thought that that was, you know that that was a thing right like it's not something that gets covered all the time.

NORMA STANLEY: Right yeah.

Nadine Vogel: we've been on it springboard I would say, probably more than any other topic that we've had for request for in the last year and a half to do, training and resilience programming is around anxiety and depression related to covid.

Kyle Maynard: Really.

Nadine Vogel: Yeah.

Kyle Maynard: Wow is it in terms of people that have had the virus, or is it people that were like dealing with the lockdown.

Nadine Vogel: Everything

Kyle Maynard: Or both.

Nadine Vogel: Yeah so we have folks you know that that had been dealing with working from home and really feel like they need to be in an environment with other people.

Nadine Vogel: Then you have folks are working like in a distribution Center have to be with other people that really feel like they want to be.

Nadine Vogel: You know, working at home, we have folks who have children with disabilities at home that when they couldn't go to school, the parents were really struggling with how to help them and not have them regressed either physically or.

Nadine Vogel: academically right whatever whatever the issues were on, we also have issues of just people now it's there's so much uncertainty.

Nadine Vogel: You know my employer said we're going to go back to work in October well here's October, now they said, well, maybe January will make like.

Nadine Vogel: People are just struggling in different ways, and I I you know, I wonder how and maybe you can share with our audience are there other pieces in that in your no excuses book.

Nadine Vogel: That could apply to this, and maybe you could help them kind of get out of some of the way they're feeling because mental health is thoughts and feelings right it's a disability, that we don't see.

Kyle Maynard: it's actually it's been so long since I.

Kyle Maynard: Since I wrote the book.

Nadine Vogel: That's your homework, you need to go back.

Kyle Maynard: You mean, go back and read the book.

Nadine Vogel: [Laughter.] And they come back and talk about it um you know, I think, even for folks listening, I mean norma you, you and I were talking about this, I was telling her you that you do Brazilian Jiu jitsu.

Nadine Vogel: So why don't you just first tell our audience what that is and how it's different than other jujitsu because.

Nadine Vogel: I read a little bit about it, and my mind was like blown.

Kyle Maynard: yeah it's a.

Kyle Maynard: So basically.

Kyle Maynard: The short story with that is is that it's like.

Kyle Maynard: Three dimensional wrestling.

NORMA STANLEY: wow.

Kyle Maynard: So it's in the wrestling wrestling take a very two dimensional kind of like impact kind of like force on force on that thing and jujitsu I think is just adds a new dimension to it.

Kyle Maynard: Because in wrestling you can't be pinned right are you The goal is to not be pinned in jujitsu it opens up the dimension and allows you to get to learn to fight from the back.

Kyle Maynard: So it's.

Kyle Maynard: It that just yet kind of adds like a different layer of have a whole new world and it opens up with that and it's not necessarily that one is like you know superior or.

Kyle Maynard: or not it's.

Kyle Maynard: I mean, there is an objective aspect to that, I think.

Kyle Maynard: If I were to choose kind of an equally matched.

Kyle Maynard: Jiu jitsu.

Kyle Maynard: fighter compared to a wrestler I would say, probably I put my money on the jujitsu person nine outta 10 times.

Kyle Maynard: I mean it's depends I mean if it's if it's actually maybe maybe less maybe less than that maybe.

Kyle Maynard: somewhere between six and eight is it's.

Kyle Maynard: yeah it's actually in wrestling it teaches you how to like control the space much more effectively right, so you can.

Kyle Maynard: You can force take Downs and things like that, and if you're in a in a fight, you know, in a street fight kind of situation self Defense situation, then you don't want to end up on your back.

Kyle Maynard: But in jujitsu too at the same time, if it's a one verse one like even fight where there aren't other people that are involved in it, and I think that, like.

Kyle Maynard: jujitsu probably superior because it allows you to be able to go and do things with wrestling while right wrestling tells you don't break this person's arm don't choke the person.

Kyle Maynard: Don't you know don't go to your back and get pinned in jujitsu that's the goal.

Kyle Maynard: Right is not necessarily it's.

Kyle Maynard: it's yeah to do all the things that wrestling tells you not to do.

Kyle Maynard: So when you first go into wrestling from Jiu jitsu than it like you, basically, are taught all these like super bad habits.

Nadine Vogel: Right right, you have to unlearn things.

Kyle Maynard: Exactly.

Nadine Vogel: Wow. That's kind of interesting. So we have to break for commercial, but when we come back Kyle because you.

Nadine Vogel: professionally speak all over the world, you know you're always traveling so i'd like to talk about how one covid has kind of had an impact on that, but then two just about you know accessible travel.

Nadine Vogel: And what that looks like, and you know if you have thoughts for the travel industry we'd love to hear some of that.

Nadine Vogel: So let's just go to commercial break, and this is Nadine Vogel with Norma Stanley our guest Kyle Maynard and we'll back in just a minute don't go anywhere.

Voiceover: And now it's time for a commercial break.

Voiceover: And now back to our show.

Nadine Vogel: So kyle I am so excited to be talking to you today Norma and I have had many conversations about travel and accessible travel as folks know she has an adult daughter Sierra he's a wheelchair and.

Nadine Vogel: I mean you travel all over the world, well, I mean I don't know about with covid I guess know we should start there I don't know what your travel schedule.

Nadine Vogel: has been like covid and how its impacted maybe we'll start with that, but now what i'd love to understand is your perspective.

Nadine Vogel: On traveling with a disability, and you know, helping the industry understand that disability doesn't just mean someone's coming here in a wheelchair.

Nadine Vogel: Right and how we how we address that.

Nadine Vogel: So it's all yours.

Kyle Maynard: So.

Kyle Maynard: I think I have a unique perspective of being able to travel, I mean there's there's definitely some difficulties but um you know it's by and large I use a like a push wheelchair, as opposed to a.

Kyle Maynard: Okay yeah.

Norma Stanley: Motorized.

Kyle Maynard: Like dead motorized heavy powered wheelchairs.

Nadine Vogel: Right.

Kyle Maynard: it's um.

Kyle Maynard: My first trip that I ever took on my own I used a heavy motorized wheelchair, and so it was a landed in Las Vegas and have added you know, a 250 pound chair.

Kyle Maynard: And I had to figure out how to get from the hotel to from the airport to the hotel and.

Kyle Maynard: ended up booking a ticket on a on a bus that was like a special there's like a tour bus Basically, this is only thing that had a lift.

Kyle Maynard: To find like a cab you know I think now and Vegas they have a bunch of the caps that have ramps and such a time that you know wasn't the case, and so it was super just difficult thing to you know to deal with.

Kyle Maynard: And then, basically, you know I realized at that point that I wanted to go and travel with the with the.

Kyle Maynard: The Non mechanical chair, with the most share and it helped things a lot um.

Kyle Maynard: So.

Kyle Maynard: yeah that's basically you know, one of my main reasons for for doing that I know you know it's just not easy to get around when you're when you're dealing with that 300 plus pound chair.

NORMA STANLEY: Yeah. I'm always dealing with that.

NORMA STANLEY: Because of my daughter I sustained you know nerve damage in my arm, as a result of putting my daughter in and out of her wheelchair.

NORMA STANLEY: In the car, you know, putting it in the car every day for the last 30 years, and so you know, I was moving towards the motorized chair probably so I wouldn't have to do as much of that every day, but you know when I travel, I actually prefer to the push chairs.

NORMA STANLEY: And i've heard that.

NORMA STANLEY: the motorized chairs, they damage them when they travel with them.

NORMA STANLEY: And also, you know they're highly expensive, so I you know I probably will be using a pushchair as a as a backup when we do both go out of town.

NORMA STANLEY: You know, just to be on the safe side because I mean those things are you know aren not just simple to come by as some people think.

Kyle Maynard: Totally yeah and it's also you know you feel for the perspective of the airlines to right like it's you know the planes have a certain amount of weight that they can go and carry and then you know you add another.

Kyle Maynard: You know 300 plus pound chair to the to the mix and it's you know.

NORMA STANLEY: yeah that's a whole nother situation that's true.

Nadine Vogel: It but in terms of travel Kyle, what have you found um you know traveling in the US versus traveling in other countries.

Nadine Vogel: Because obviously you've traveled all around the world, what kind of perspective can you share as someone.

Nadine Vogel: Who has a disability, who is who is able to get around every place but you know what what kinds of issues have you faced or have you had to overcome, so to speak, because of your disability.

Kyle Maynard: yeah it's it's it's super.

Kyle Maynard: You something we take for granted, I think, being in the US, you know it's a relatively younger country as opposed to like being in Europe, for instance.

Kyle Maynard: More and a lot of like developing areas of the world.

Kyle Maynard: I think that they have similar challenges for different reasons, so in in Europe, you got massive cobblestones yeah.

Kyle Maynard: Just like that, and its historic buildings right that are these ancient buildings that they.

Kyle Maynard: Say it's really tough to to get around.

Kyle Maynard: And then.

Kyle Maynard: In.

Kyle Maynard: In other developing areas of the world like Bali is one of my favorite places.

Norma Stanley: I always wanted to go there.

Kyle Maynard: Ah it's amazing.

Kyle Maynard: This is really special place but it's really hard to get around even for me to get around there was like was really difficult.

Nadine Vogel: Really.

Kyle Maynard: Yeah it was.

Kyle Maynard: yeah super challenging.

Nadine Vogel: How do you find the perspective of the people in the different countries, so you know one part of accessibility is that is a physical accessibility, but then we have you know all the other components about how people communicate how they willing to how comfortable, they are engaging.

Nadine Vogel: You know what have you found there.

Kyle Maynard: um let's say it's.

Kyle Maynard: A pretty universally seems as though it's kind of like one of the biggest perks of being born with a disability is.

Kyle Maynard: it's a.

Kyle Maynard: bit kind of you know, I think it helps people make you, you know helps people be more compassionate and understanding, I think.

Kyle Maynard: If. That makes sense yeah.

Kyle Maynard: At least that what i've experienced.

Kyle Maynard: um it's definitely not always the case.

Kyle Maynard: yeah I would say.

Kyle Maynard: That it's basically that's a.

Kyle Maynard: People are for the most part they're pretty understanding.

Kyle Maynard: other places where people like Americans traditionally like don't really have you know that people aren't that Nice to him, like in in France France that's right it's like traveling through France people were awesome and super nice to me.

Nadine Vogel: Okay.

Kyle Maynard: In um

Kyle Maynard: You know from other Americans that i've heard say that that's definitely not the case.

Nadine Vogel: yeah like. How did I not have.

Nadine Vogel: That experience.

Kyle Maynard: Exactly.

Nadine Vogel: So I know we only have like a couple minutes left, but one of the things that I know has been really, really important to you is nutrition and health.

Nadine Vogel: I mean, obviously, from all the sports side of everything you do, but even just you know what you put in your body things like that um I think I think it's something that can help everyone so, can you can you share a little bit about that.

Kyle Maynard: yeah um you know.

Kyle Maynard: Probably in the state right now relearning a lot of that stuff.

Kyle Maynard: Okay it's not something i've spoken about publicly yet, but I actually just as up like two days ago.

Kyle Maynard: got diagnosed with a brain injury.

Nadine Vogel: Oh no. I'm so sorry.

Kyle Maynard: I'm hesitating.

Kyle Maynard: Even saying that publicly but it's something that's like a totally new disability aspect of things that i've never you know I had to deal with so basically.

Kyle Maynard: I was told that I have currently a dime sized hole in my brain from like potentially from like taking a knee in jiu jitsu, but not entirely sure what.

Kyle Maynard: it's been that way for a while it's kind of been battling just depression, anxiety other things like that sleep issues stuff that I hadn't had to deal with before.

Kyle Maynard: So it's um.

Kyle Maynard: You know i'm in the process of kind of re learning a lot of.

Kyle Maynard: You know just life stuff.

Nadine Vogel: Sure. Sure.

Nadine Vogel: Understandably so, so I think my my last question for you and I think it it kind of brings all of it together.

Nadine Vogel: What is it that drives you I mean you are so unbelievably driven right beyond no excuses it's like God forget the excuses that's all right.

Nadine Vogel: What what is, what is your mindset like, how do you do that.

Kyle Maynard: Uh. Do what.

Nadine Vogel: Just be so driven right, no matter what you're told what your slot with what happens is like yeah okay fine move on we're going to get past it we're going to you know one plus one is going to be three.

Nadine Vogel: we're going to just make this the best way to make it, how do you I know our listeners, you know, want to hear that they want to hear.

Nadine Vogel: My gosh I complain about my daily thing, and I have just this but look at everything kyle you know, has had to deal with is dealing with yet he is just fighting fighting pushing pushing moving it's a mindset issue, but I think our listeners would love to know how you get that mindset.

Kyle Maynard: The first thing I would say is I don't have that mindset daily it's something that like have to continually battle and. You know.

Nadine Vogel: Okay.

Kyle Maynard: um and I think it's especially been difficult lately.

Kyle Maynard: Um. And that's Okay, you know it's a.

Kyle Maynard: it's it's not a it's not a one size fits all approach with things right, but I think faith is a big aspect of it.

Kyle Maynard: spirituality.

Kyle Maynard: Just constantly learning psychology philosophy as much as I can you know take in different different perspectives and different things, exposing myself and being around people that inspire me.

Kyle Maynard: I think is is really is pretty pretty key um you know, I think.

Kyle Maynard: Our mental.

Kyle Maynard: Mental diet, so to speak, is a big aspect of what.

Kyle Maynard: Like.

Kyle Maynard: Fuels us.

Kyle Maynard: Yes, it's sort of do we have our physical things so you're asking about like you know, nutrition and that kind of stuff right.

Kyle Maynard: I think that's it's also like the diet perspective is coming from like what in who were taking it in interacting with and what we're allowing ourselves to be influenced by.

Nadine Vogel: Right.

NORMA STANLEY: environment.

Kyle Maynard: yeah like environmental factors may be that we wouldn't like morally consider as environmental factors that are probably some of the most environmental factors right like they think it was um.

Kyle Maynard: Was it Stephen covey who is on.

Kyle Maynard: No. Dale carnegie's another when it comes alive it wasn't him there is that it was Tony robbins mentor he said i'm actually just.

Norma Stanley: Jim Rohn

Kyle Maynard: Jim Rohn. that's it.

Nadine Vogel: I know i'm like okay i'm running your name in my head.

Nadine Vogel: You win the prizes norma.

Kyle Maynard: He he said.

Kyle Maynard: You know you're most influenced by the five people you spend the most time with.

NORMA STANLEY: yeah yeah.

Nadine Vogel: That is for sure.

Kyle Maynard: And so I think lately i've tried to like have a bit more of like a group let's kind of like elimination of the like the things that are are the people that I want to spend time with.

NORMA STANLEY: Amen. I'm in the same space, I hear you.

Kyle Maynard: Yup.

Nadine Vogel: You know it's it's important it's um I think sometimes we don't realize how toxic people are environments can be.

Nadine Vogel: But we get in a rut right we just get you know used to it here's what we do every day here, so we talked to every day we don't we don't realize the impact, so I think in closing kyle if you can think of one thing one situation, one person that just really motivates you.

Nadine Vogel: What would the be or who would that be.

Kyle Maynard: Lately it's been my family for sure.

Kyle Maynard: which you know is i've gotten into it a lot with them actually move back to Georgia, where I grew up pre covid. And um.

Kyle Maynard: So we spend a lot of time together.

Kyle Maynard: And i've gotten in, and you know gotten into it with them, just like.

Kyle Maynard: A lot.

Kyle Maynard: But at the same time, I really appreciate the lessons that they taught me.

Kyle Maynard: And the life and that just you know.

Kyle Maynard: kind of like we were talking about just you know being fortunate in fact of like where we're born right like you know living in America living in a place that has like accessibility has you know other resources that other places on the rest of the world don't.

Nadine Vogel: Right.

Kyle Maynard: You know it's a really.

Kyle Maynard: Special.

Kyle Maynard: Special thing and it's the I think that, like i'm very fortunate and blessed in the family that I was born into as well, even though you know, sometimes we all get into it with with each other right.

Nadine Vogel: Nah.

Kyle Maynard: yeah that's a.

Nadine Vogel: Really.

Nadine Vogel: Well, I think that's that's important, and I know you know norma and for Norma and myself, we want to thank your family for giving you to us.

Kyle Maynard: Awe. Thank you.

Nadine Vogel: You know even with all of the.

Nadine Vogel: You know inspiration you look to others, for you inspire so many and and and not and not because you have a disability, but but I mean just all of the things that you do.

Nadine Vogel: That you think you 99% of the population, they have no disabilities couldn't do it.

Norma Stanley: That's right.

Nadine Vogel. Right. And I think that's why we started this this podcast because.

Nadine Vogel: Disability does matter, and I think you're a perfect example of it and we just want to thank you and your family for letting us talk with you and talk about that.

Kyle Maynard: Absolutely.

Nadine Vogel: Actually have that real conversation so.

Nadine Vogel: I just want to say thank you and wish you the best, especially with this new the latest news you've had health news so good luck with that.

Nadine Vogel: And anytime you want to come back on the show you just let us know, but this is another episode, we are closing out of disabled lives matter, not just the podcast what is it norma.

NORMA STANLEY: It is a movement. Join us.

Nadine Vogel: It is a movement babe.

Nadine Vogel. Alright, everybody will see you next time.

Kyle Maynard. Bye. Thank you guys.

NORMA STANLEY: be blessed.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Disabled Lives Matter Season 1, Episode 34 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Shawn Adkins & Jonathan Kendrick

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley… yay!

Nadine Vogel: Hello Hello everyone, this is nadine vogel you're host of disabled lives matter, and I am joined today by my fabulous co host norma Stanley.

NORMA STANLEY: Hi guys how you guys doing today.

Nadine Vogel: Everybody is really good I am I am just so excited because Well, first of all, as all of our listeners know.

Nadine Vogel: disabled lives matter, while it is a podcast it is much more than a podcast, it is a movement, and we want everyone to join this really important movement.

Nadine Vogel: And the way we're going to do that today is by talking with two amazing guests Jonathan kendrick and shawn adkins now jonathan i'm going to start with you, I've heard you recently referred to as a mastermind so that's a little ah I don't know if it's scary or exciting. Not really sure.

Nadine Vogel: So my understanding is that you are the founder and CEO of digital technology partners and um so just tell us a little bit about what you do and um what got you into helping individuals with disabilities.

Jonathan Kendrick: Well all right, for a couple of things there alright so i'm founder and CEO of digital technology partners, we are a I-T company that specializes in the dental industry.

Jonathan Kendrick: So we do everything from computers and networking audio video phone systems basically if it's technology inside of a dental practice we we we deal with it.

Jonathan Kendrick: The our work for Eli program, which is a division inside of digital technology partners is a e-waste recycling division and what they do is.

Jonathan Kendrick: They take all of our old technology they break it down they make sure that things go to the proper recyclers refineries and.

Jonathan Kendrick: They make sure that all of the protected health care information that comes in, on these computers gets properly destructed and provides a real service we employ adults with disabilities to.

Jonathan Kendrick: To man that department and do those services and we currently have seven adults with disabilities that work for us as employees of digital technology partners.

Nadine Vogel: very, very cool so you know interesting what one thing I thought was really fascinating when I was learning about what you guys do with dental industry, I am sure that you guys are aware, there's a

Nadine Vogel: whole industry within the dental industry that's all about caring for children with disabilities, that you know, especially with.

Nadine Vogel: developmental disabilities is a lot of issues with oral health care and there's some amazing programs we've interviewed on this show on our TV show.

Nadine Vogel: I know colgate has donated a million dollars recently to Pennsylvania, to put some research together we've had some special needs dentists on our programs.

Nadine Vogel: So I just kudos to you guys to say anything to do with this to me is like so important to the fact that you're doing this work and you employ people with disabilities, I love when things come together, you know I think it's really great.

Jonathan Kendrick: So know we get we get really excited about that too, we have a great client Dr andino for dentistry for the developmentally disabled.

Jonathan Kendrick: yeah right there in Atlanta.

Jonathan Kendrick: She is great she's awesome their their program is awesome and they are, they are solely.

Jonathan Kendrick: focused to these individuals as well.

Nadine Vogel: yeah it's that it's really important so but before I talk to shawn a little bit tell me, did you just wake up one morning and say Okay, I need to do this and in doing this, I need to employ people with disabilities or how did you come to this.

Jonathan Kendrick: That is that for shawn

Nadine Vogel: Now let's start with you, Jonathan.

Jonathan Kendrick: Okay i'm sorry.

Nadine Vogel: Since you're the mastermind behind this.

Jonathan Kendrick: I heard that my apologies, I thought that you called his. name.

Jonathan Kendrick: So we in in about 2015 I was reading a book called the evolved enterprise by Yannick silver that book has that it talks about doing something more.

Jonathan Kendrick: With your company than just turning profits doing something for the greater good doing something to help people for more fulfillment than then just making profits which we.

Jonathan Kendrick: might do to be sustainable, obviously, and in reading that book some of the examples TOMS shoes, you know buy a pair of a pair a lot of different companies have.

Jonathan Kendrick: used this methodology and we were having a business issue need at that time where we're putting in all these new computers.

Jonathan Kendrick: And in the past, doctors, without me talk the way you do with these computers and I went to say you know donate them to your church give them your employees, etc, but as compliance and security regulations got.

Jonathan Kendrick: Stricter it wasn't a good answer and it wasn't an answer that we could actually give as their trusted advisor any longer.

Jonathan Kendrick: So computers were starting to stock up in our in our office and i'm reading this book and I didn't know much about e-waste, but I knew that you can't just recycle a computer, the way it was so.

Jonathan Kendrick: We were working with on a great company in Atlanta called E-cycle, we still partner with them and jeff's been great he's helped us tremendously.

Jonathan Kendrick: And I reached out to him and he was picking up our e-waste and I started learning a little bit more about it, you have to you know separate these parts, you have to.

Jonathan Kendrick: Take parts, you have to go through this process and I, you know it just hit me that you know that is something that my son Elijah could do my son Elijah.

Jonathan Kendrick: He'll be 16 he has down syndrome, he has autism, and I was trying to think about something eventually that he can do in our company if he decides to do that.

Jonathan Kendrick: When he gets old enough.

Jonathan Kendrick: And so anyway that's how the idea came came to me.

Jonathan Kendrick: And so we solved a business need a while also you know.

Jonathan Kendrick: coming up with opportunities and it.

Jonathan Kendrick: took me a couple of years in 2018 we finally got it going so.

Nadine Vogel: that's fabulous well so 2018 seems to be an important year because Sean Sean adkins that's when you joined.

Nadine Vogel: And my understanding is is.

Nadine Vogel: That you have dual roles with work for eli, which is one of the divisions and Brett works which is, I think another division that's nonprofit so, can you talk to us about your double duty yeah.

Shawn Adkins: Um, of course, thank you for having me again, I appreciate it um, so I am the programing director for the work for eli project I started in 2018.

Shawn Adkins: And when Jonathan said, there was a lot of PCs and electronic equipment in his warehouse he wasn't kidding I had a dive in that.

Shawn Adkins: headfirst trying to learn everything I possibly could about the computer just basic knowledge of what each of the pieces mean what's their worth.

Shawn Adkins: Jeff from e-cycle was very, very helpful with that and just trying to put together a plan and kind of a attack, if you will, on what his vision was and trying to take that vision and grow with that vision itself so.

Shawn Adkins: So, as he says, we employ seven we've got seven currently right now we've got 30 on a waiting list.

Nadine Vogel: wow.

Shawn Adkins: Yes. So, and with the 30 on the waiting list right now that's where we jumped in and we thought well we've got to do something for some of these individuals who are still waiting we've had.

Shawn Adkins: Our last hire that we have we he put in his resume in 2018 and we just hired him last year.

Nadine Vogel: Oh, my Gosh.

Shawn Adkins: Yeah so it's based off of you know, the product coming into us as much product, we can get in.

Shawn Adkins: The more we can give hours out and and help out these individuals with with a career employment and job security whatnot but so with that said.

Shawn Adkins: We began to think about what else we could do, and I think Jonathan can talk a little bit more about this.

Shawn Adkins: More in detail with the Brett works part, so I am the executive director Brett works and basically what it is, is we're bringing individuals in.

Shawn Adkins: and training them with soft skills and hard skills so we'll train them in here will train them with you know either being interviewing skills, working with others working alone.

Shawn Adkins: Even when it comes down to hey you're done with the break room let's make sure it's clean so when we actually.

Shawn Adkins: offer these positions to other employers out there after vetting these employers, you know they have a good knowledge of what's going to happen and what's going to go on within their company so.

Nadine Vogel: that's that's fabulous that that really is it's you know it just shows the.

Nadine Vogel: It just shows how aware, you are of the needs of individuals with disabilities to be employed.

Nadine Vogel: But it also shows, your recognition of their ability like anyone else to be gainfully employed right, so I think that that that's so important, so I guess one of my questions is you know.

Nadine Vogel: Obviously, I think we could go on and on about the rewards of working with adults with disabilities and certainly want to hear some of that, but can you also give us along with that some of the challenges if any of that you've experienced and this could be for either one of you.

Shawn Adkins: Well, some of the challenges that i've experienced is is I don't like to call them challenges I just like to call the learning lessons.

Nadine Vogel: Okay.

Shawn Adkins: Basically um because every individual is different in their own way, who I work with and so you've got to sort of rethink who you're talking to as you're talking to them.

Shawn Adkins: But once you build that trust with that individual and that's, the most important thing, building the trust with them with the parents with their caregivers.

Shawn Adkins: It all comes into fruition and it's absolutely wonderful I learned every day I learned something new from them that I didn't know even about them, or about myself of what I could do.

Shawn Adkins: You know, patience is such a big virtue when it comes to this it's a huge virtue and so that's one element in my lifestyle that i've had a truly truly look at and say okay.

Shawn Adkins: Look who you're with. Look who you're dealing with, and you know let's just treat them like anybody else and that's what I do.

Shawn Adkins: I treat them like an adult by they give them we do competitive wages for them, we I give them their appraisals, I give them reviews and.

Shawn Adkins: You know it's it's it's wonderful to see that, in their eyes, because once they get that first paycheck if there's they say I know what i'm gonna do i'm going to my mother out to.

Shawn Adkins: lunch today.

Shawn Adkins: You know, with my pay check, so they are so excited you know they feel a sense of purpose and worth that a lot of people that i've seen in other companies that work.

Shawn Adkins: I would hire these guys over some of those guys any day it's amazing the work ethic.

Shawn Adkins: Their their absorption like a sponge with the knowledge that you present them and there's times, where we get some of the jonathan's texts that come back and looking for a part and they're like no no that's that's not the name of that part.

Shawn Adkins: They get they get a little school to once in a while, so that makes me feel proud that they that they learn those those different parts of it but there's so much more than just.

Shawn Adkins: The parts with the computer stuff like that it's socializing with other individuals it's building the relationships with other individuals, the team as a whole are there such great team they're.

Shawn Adkins: they're so connect with each other it's incredible how they feed off each other and how they work off each other and they're so caring and loving towards each other it's.

Shawn Adkins: it's truly amazing to see it and I always tell people if you're ever in the vicinity, please come by and see us and view that because it's incredibly awesome just so awesome.

Nadine Vogel: So norma, how do we clone these guys.

NORMA STANLEY: yeah right.

NORMA STANLEY: I know I I had an opportunity to go to the ribbon cutting services yep not too long ago, and it was so beautiful and yeah I love the idea I love the concept of what you're trying to do particularly trying to.

NORMA STANLEY: You know, make sure that other companies can can experience the the luxury and the abilities that our family members have people with disabilities have.

NORMA STANLEY: And just really get as many of our people employed as possible, so I think it's a beautiful thing, so this is one of the reasons why I said y'all gotta be on the show.

Nadine Vogel: No absolutely I you know and it's it's disheartening in some ways, you know that there's a waiting list, but you know I found that.

Nadine Vogel: For anything that's really worthwhile anything it's really good out there for people with just in general, but people with disabilities in particular there always seems to be that waiting list.

Nadine Vogel: right here it's not immediate because there's not enough of y'all doing this around the country, and you know, Jonathan obviously like you said you know your son.

Nadine Vogel: Elijah was you know the impetus to this and, in many ways, but you know it doesn't have to be right, it could be, because someone's working now with someone side by side, who has a disability that says wow there's so much more we could be doing right.

Nadine Vogel: I just I just love this and and i'm serious we need to figure out how to clone you guys.

Nadine Vogel: yeah well so i'm gonna we're gonna go on commercial break and so you guys think about cloning, while we're on break.

Nadine Vogel: we'll be back in just a minute, and then you know I wanna I want to hear from you guys a little bit about.

Nadine Vogel: You know what do you think people should know about working side by side with someone with a disability, because they think there's a lot of fear.

Nadine Vogel: There's bias raises me people trying to be mean but just didn't ever had that experience before so you know Shawn you gave us these really great examples of how wonderful it is.

Nadine Vogel: From a company perspective and how it benefits the individual, and I do agree with you, I think everyone everyone, no matter who they are, what their disability is has a right to work.

Nadine Vogel: Right has the right to be gainfully employed have their own money for housing for social for whatever it is, so I have major issues with that.

Nadine Vogel: So when we come back from break i'd love to hear what you guys think about how do we, how do we convert this so people really start getting comfortable right so stay tuned everybody, we will be back with Shawn and Jonathan and Norma in just a minute.

Jonathan Kendrick: Thank you.

Voiceover: And now it's time for a commercial break.

Voiceover: And now back to our show.

Nadine Vogel: Well welcome back everyone to the second half of today's episode of disabled lives matter more than just a podcast we are a movement.

Nadine Vogel: And we are talking today to Sean Atkins and Jonathan kendrick about digital technology partners, and specifically two Divisions that they have workfor eli and Brett works which is about employing adults with disabilities and norma take it away they're just doing such amazing things.

NORMA STANLEY: yeah you guys are doing some amazing work, and I am just really excited about what I saw at the new facility so tell us you know your perspectives about and tell other people who are listening, or when listen what it's like working with people with disabilities and they need to know.

Jonathan Kendrick: So i'll i'll start now i'm gonna lead shawn and carry on on, but that is part of so and I want to clarify a little bit so Brett works is the the nonprofit side. That we are just starting.

Nadine Vogel: Right. Right.

Jonathan Kendrick: And Brett works came along, because of our long waiting list you know 30 people waiting some for three years and it was how do we get people off this list, how do we get people moving, and how do we start you know.

Jonathan Kendrick: providing services to some of these individuals that have been waiting for so long, and so we brought the nonprofit as as a way to.

Jonathan Kendrick: raise some funds get people working and start educating employers other employers about the successes that we've had, which is exactly what you're.

Jonathan Kendrick: I think coming around to ask us norma and you know what what other employers i'm going to speak from the employer side of it and i'll let Shawn speak from.

Jonathan Kendrick: The working with the individuals themselves side or aspect of it, but what I would want other employers to know is, you know we always hear this what's the risk what's the production like gonna be like, and you know calm down. You know.

Jonathan Kendrick: Here's the thing, most of these individuals are not looking for 40 hours a week.

Jonathan Kendrick: The first of all, so that's the that's the first I don't know that I have a job, you know that I can really give someone 40 hours a week well guess what most of them don't want 40 hours a week.

Nadine Vogel: Right.

Jonathan Kendrick: Most of ours work two to three days a week, and we, and the reason why Brett works is so so good for us right now is because we have.

Jonathan Kendrick: Three years of experience of doing this in our own company, so far, so we've learned a lot.

Jonathan Kendrick: So we as we brought on individuals, first we brought two and then we started expanding the hours and we started offering or or trying to offer more and what we found is that these individuals also have sometimes other commitments.

Jonathan Kendrick: They have to have their own you know they have to provide their own transportation to work so sometimes caregivers can't bring someone five days a week.

Nadine Vogel: Right.

Jonathan Kendrick: But but. Those individuals still look very, very forward to coming to three days a week, for you know four or five hours a day.

Jonathan Kendrick: And it gives them that purpose of what they're looking for so that would be the first thing I would tell.

Jonathan Kendrick: An employer and part of our other part of what Brett works is going to be doing is like I said educating these employers.

Jonathan Kendrick: The other big key successes, the supportive system that you put behind them, so when employee employees come to work inside your facility and i'm gonna let.

Jonathan Kendrick: You know Shawn go on about all the benefits that you're going to get from it, because you will it's been amazing for our culture.

Jonathan Kendrick: Is it's just making sure that you're setting up a proper support structure inside that's going to allow that person to be successful at at that job and then, finally, I would say, keep an open mind.

Jonathan Kendrick: there's you have to sort of look around, I mean it's kind of like what I did on our e-waste.

Jonathan Kendrick: issue or problem, and you know I solved it with creating this division for for adults with disabilities but there's all kinds of things that can be done in the workplace.

Jonathan Kendrick: And when you really start thinking okay I don't have to solve a 40 hour problem I can solve, whatever hour problem there's a lot more opportunities that you can you can go look at, and as long as you have.

Jonathan Kendrick: The will the the the you know the desire for these people to really come in and help and then see all the benefits that we've seen there's just a ton of opportunities, all over the place, I think everyone wanted to know.

Nadine Vogel: What I think you're saying Jonathan is that now we've talked to a lot of smaller businesses and they think oh that's for the really large companies.

Nadine Vogel: Just those are the global companies.

Nadine Vogel: That can do that, and I think what you're what you're showing clearly is that no this can be for midsize it can be for small businesses opportunities everywhere.

Nadine Vogel: And i'm just so glad to hear you talk about that because I hear that a lot only do we only have you know 15 employees 100 employees whatever we're not Coca Cola, you know another big company and it's always I scratch my head i'm like well, what does that have to do with anything.

Jonathan Kendrick: It really doesn't.

Nadine Vogel: So yeah so i'm glad that you address that because that fear factor as you know for anybody is big Shawn anything you want to add to that.

Shawn Adkins: yeah I do when he was talking about setting them up for success that's my biggest proponent of doing that.

Shawn Adkins: So every morning I send all of them an email and their caregivers and their parents, let them know what their goals are for the day.

Shawn Adkins: And they're realistic goals and sometimes we have competitions with these goals, just to have it a little bit fun.

Shawn Adkins: But I want them to know, and I want them to know that what they're going to be doing for the day so they're ready to go for that day.

Shawn Adkins: You know, and the parents know about it so they're excited to know okay so so and so's going to break down 15 PCs today, you know that's it that's their goal.

Shawn Adkins: If they don't hit their goal, then we talked about it, they say, well why didn't you hit it was there something going on, was it something wrong, you know and.

Shawn Adkins: And usually it's just like no I just had a hard time with this one PC and that's okay that's cool and then at the end of the day, i'll send off a note to all the parents saying this is what they did this is how they hit their goal.

Shawn Adkins: These are the things that we're going to work on going in the future, you know if you guys have any opinions or any sort of.

Shawn Adkins: Special thoughts that you can give me to to handle some of this please feel free to do so because i'm very open to suggestions.

Shawn Adkins: that's why I always want the parents and the caregivers always involved with me, I always make them involved with everything, because I know them.

Shawn Adkins: I try to know them, as well as they know them, but they might know a certain trick that I could use.

Shawn Adkins: To get them to work instead of me trying to figure out and get frustrated by it you know so it's.

Nadine Vogel: Got it.

Shawn Adkins: It's a blessing that we've had these individuals and like Jonathan was saying, I wish a lot more people were out there, educated by this, if you look right now there are so many job openings right now that nobody wants to go to work.

Nadine Vogel: Right.

Shawn Adkins: Look at that. Perfect example.

Shawn Adkins: These individuals can go in there and and work these jobs even being it, you know four hours two hours three hours.

Nadine Vogel: Yeah absolutely.

Shawn Adkins: love it, I mean there's times, where I got to tell my people to quit working.

Nadine Vogel: Yeah.

Shawn Adkins: Because they just keep going and going.

Nadine Vogel: Work ethic.

Shawn Adkins: yeah. exactly.

Shawn Adkins: Oh it's so strong they come in early they leave right at their time they're supposed leave they know when so I gotta put clocks around the whole building and just so they know what time it is so they know is that time for them to go, you know we do the countdown process.

Nadine Vogel: You think about that that's like a dream employee right for any employer is the one that wants to stay to have that work ethic.

Nadine Vogel: um but then you know a lot of employers aren't connecting the dots right the way you are.

Nadine Vogel: But you know the other thing that you said shawn that just struck me as you're describing you know what you're doing I thought well at the end of the day, you may approach it a little bit differently, but it's performance management.

Nadine Vogel: I know we all do it all organizations its performance management, and you know you take it to a more granular level, you know daily, which is sometimes I think even people that don't have disabilities. could use that.

NORMA STANLEY: That's right.

Nadine Vogel: Right. But, but something I do oh God we just have a couple minutes left, but something that you touched on that I really want to make sure we address before we before we end today, you mentioned engaging with the parents.

NORMA STANLEY: Oh yeah.

Nadine Vogel: So obviously these are individuals with intellectual or developmental disabilities these are not you know college graduates with disabilities things like that.

Nadine Vogel: But I have spoken and have worked with so many companies where that is actually what they fear the most.

Nadine Vogel: They say you know I don't want to have to deal with the parent, I mean i'm dealing with the employee and now i'll probably have to deal, maybe with a job coach.

Nadine Vogel: Or the parents and then, what happens if the parents want to get involved to ask questions, and you know get involved in the way i'm managing performance and I find that that's.

Nadine Vogel: that's one of those scary pile things for for a lot of folks so I just like you know, in the minute or two that we have left, could you touch on that.

Shawn Adkins: yeah i'd be more than happy to yeah.

Shawn Adkins: You know, for those individuals those naysayers out there, think they got to deal with them it's it's it's the best book that you can actually read is through them.

Shawn Adkins: It really is, I mean there's management books out there there's all kinds of books that you can read about managing about performance about skills about training about all that kind of stuff.

Shawn Adkins: But to get to know the person and to get to know them well you get to know them you get to know the parents and get the caregivers.

Shawn Adkins: it's not a big deal to talk with the parents and i'll be honest, I love talking with them, because they need to know i've had some individuals who come in for interviews are nervous because they're like well I don't want my my kid to be.

Shawn Adkins: You know, taken advantage of or you know stuff like that so i've got to say insurance i'm always talking to you guys, you know exactly what's going on, I incorporate them into all the parties in conference calls in everyting.

Shawn Adkins: they're still they're actually the parents and the caregivers are my secondary team.

Nadine Vogel: [Laughter.]

Shawn Adkins: You know without them, I wouldn't be successful with who they gave me to work with, which is also.

NORMA STANLEY: In this successful engagement and it's part of our culture, we have to be a part of what our children are doing.

NORMA STANLEY: Exactly I mean that's just the way we are as parents of children.

NORMA STANLEY: Just like that so.

Nadine Vogel: Then, and you know what I you know.

Nadine Vogel: And i'm even my older daughter, you know she's a college graduate but she has significant disabilities will have lifelong disabilities.

Nadine Vogel: And because of that, I have the same concerns right, even though she's independent lives independently, some of the same concerns that norma that you have to Sierra.

Nadine Vogel: Right even could Sierra can't communicate, I still have for for my daughter, and so I you know I can tell you both that you know you're talking with two special needs parents have adult daughters and you are just singing our song.

Jonathan Kendrick: It's a very collaborative.

Jonathan Kendrick: Environment right so and and we have so much to learn, you know and in to because we have seven every individual is so different.

Jonathan Kendrick: Why why start from the very beginning of trying to learn what we were doing and also learn that that that person may learn so much from their families.

Nadine Vogel: So just imagine is would be really controversial.

Nadine Vogel: But just imagine if we did that, for all employees that maybe we engaged with the parent.

Nadine Vogel: Or engaged with this spouse, you know when I was in corporate i'll tell you, you know 100 years ago when I interviewed someone, especially if it involves like a relocation, or something that was going to be major life impacting.

Nadine Vogel: I always interviewed spouse as well, and it was really not so much for me to ask them questions, but for them to ask me questions.

Nadine Vogel: Especially if they were going to be relocating and if they were a military spouse things where that job was going to impact them as well.

Nadine Vogel: I was not exactly the most popular girl in the world, and you know when I did that but.

Nadine Vogel: You know just hearing what you guys do it Shawn specifically how you engage with the families it's just takes me back to that and things.

Nadine Vogel: You know Johnny what you just said it's helpful because you know more about this individual is so, you know again i'm not even sure if that would be legal today to do but i'm.

Nadine Vogel: Putting it out there, because I do think it works.

Nadine Vogel: yeah so oh my gosh I cannot believe a half hour has just flown we are out of time, I feel like I could talk to you guys for like another few hours um norma Thank you so much.

NORMA STANLEY: i'm excited i'm so thankful that they were available.

NORMA STANLEY: To be a part of this.

Nadine Vogel: Well, I know that our listeners are going to just love hearing about this.

Nadine Vogel: Now, if they are a small business owner and they're thinking, I wanted to what you guys are doing, who should they contact and how.

Jonathan Kendrick: I would say, go to workforeli.com and put in a request.

Jonathan Kendrick: We have two different forms, we have one for pickups and we also have one for applications.

Jonathan Kendrick: You can you can email me at Jonathan@DTpartners.COM, you can email Shawn.Adkins@dtpartners.COM email us both we'd love to talk to any business owner honestly and help in any way we can.

Nadine Vogel: Well that's that's great, and I would like to say, and if we have someone to disability looking for a job, but that's going to give you more of a waiting list.

Nadine Vogel: But you just did just give me a forum, so if there is someone out there and they're in the area, again, maybe they can apply, you may have to create another organization.

NORMA STANLEY: And there may be some companies that.

NORMA STANLEY: would want to. just get some.

NORMA STANLEY: Helpful advice from you.

Nadine Vogel: Exactly, that's what I'm thinking. You know, might be like hey we would love to do this, but we've been struggling with how wouldn't that be amazing.

Nadine Vogel: So with that I just want to say thank you so much Shawn and Jonathan, we wish you and all of your employees the very, very best.

Nadine Vogel: And for our listeners, we hope you enjoyed today's show, and we want to thank you and we will see you on another episode of disabled lives matter more than a podcast it's a movement right norma.

NORMA STANLEY: absolutely. my best to everyone.

Nadine Vogel: All right, bye guys.

Shawn Adkins: Thank you.

Jonathan Kendrick: Bye.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Disabled Lives Matter Season 1, Episode 33 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Levi Miller

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley… yay!

Nadine Vogel: Hello Hello everyone, this is nadine vogel your co host of disabled lives matter and, of course, as always, I am joined by my co host the amazing norma Stanley hey norma.

NORMA STANLEY: How are you guys doing.

Nadine Vogel: Good how are you doing today.

NORMA STANLEY: I'm great Thank you.

Nadine Vogel: Oh good. Well i'm just wondering if you would like to open our interview, today we have this amazing person joining us he's a teacher a speaker a strategist oh my gosh so many roles so i'm gonna let you take it away norma and then we'll go from there.

NORMA STANLEY: Well, Mister Levi Miller, who is going to be speaking with us today and sharing his expertise is he's an entrepreneur, and he actually is a former.

NORMA STANLEY: promoter in the radio industry and entertainment industry, and he has a construction company and he's going to tell us all about all he does, but he works, a lot with disabled veterans on employment, so thank you for being a part of disabled lives matter today, Mr Miller.

Levi Miller: Well, thank you for having me on their norma and nadine. I'm glad to be on.

NORMA STANLEY: I am thankful that you had some time to participate, this year, this year, this and this show because we Bob is a busy the years gone by, so fast I can't believe it's October.

NORMA STANLEY: But you know I had a couple of conversations and I was really, really excited about learning how how you work, particularly with disabled veterans and your construction company, can you tell us a little bit about what that's all about.

Levi Miller: OK, firstly like you said i'm a disabled veteran a Vietnam veteran.

Levi Miller: Oh well, you know I ptsd so you have ptsd 100% disability and I always like to do something of my brothers and sisters well you know, a call them, from having been in the military.

Levi Miller: And always try to find a way to help them you know, especially the homeless vet.

Levi Miller: Because a lot of homeless vet is you know a lot of people say well you know they can do better, and this and that but.

Levi Miller: A lot of time, you know they can't find a job they had no medical insurance ad they go into bankruptcy with their family, so I, and I will try to find a way to try to help my brothers and sisters.

Levi Miller: So what I started doing first I started going to my American legion the vfw learn how to fill out claims, so I help other vendors to fill out their claims, you know with no charge at all, you know get them back on track.

Levi Miller: Uh. my company my radio station, which is WLMRDB radio, which I have a veteran show on there.

Levi Miller: And what we do, we will raise money on our veterans show, and we are like during the winter time, we will take blankets to the homeless veteran last year we acquired like 550 blankets.

Nadine Vogel: Wos.

Levi Miller: And you know we gave it to the immediate family and we try to supply them with food, you know we'll use our 501 C 3 to go to you know places to like Krogers, where you know grocery stores and get them food.

Levi Miller: And after that we opened up construction company which called right real metal construction and what we do that construction company, we hire veterans and then we also teach them we give them free training course, you know how to get into the construction business and.

Levi Miller: And our next goal is to be build one house a year and give it to a veteran and give to a veteran and his family.

NORMA STANLEY: That's awesome.

Levi Miller: So. that's what we're working real hard on.

NORMA STANLEY: That is such a sad thing, where you see people who have served our country and they don't get an opportunity to.

NORMA STANLEY: Come back and and live decent lives that they're you know became disabled mostly likely because of the war or whatever they were doing you were part of the Vietnam War.

Levi Miller: Yes

NORMA STANLEY: And they come back and they have no help and I just don't understand you said you're dealing with ptsd I know a few people who are dealing with that who are in the Vietnam.

NORMA STANLEY: War so.

NORMA STANLEY: How do you get people to understand that not it's not necessarily these people want to be in a situation of need it's just that the system failed them.

Levi Miller: Yes, navy was kind of the Vietnam veteran was kind of thrown away oh.

Levi Miller: You know, we throw it away.

Levi Miller: We have some awkward traits, you know, but we kind of throw it away can just imagine you and nadine, just, imagine you in the jungle fighting for 13 months, and then the next day you on the street, you know no rehab or nothing there was no jobs for us, we was called baby killers we were call rapists.

Levi Miller: They say about everybody in Vietnam, you know, they was on drugs.

Levi Miller: Now Oh, excuse me if I break up you know sometime I break up when I talk about it.

Levi Miller: You know, it was a rough life if you apply for a job, like when I came out, I was like let him come back you know, I was the infantry oh I go file for a police job, they said no, you know you infantry you can't be trained no more. you see what i'm saying they don't want to take a chance, with us.

Nadine Vogel: Well it's bias right it's bias at its core.

Nadine Vogel: Yes, Norma and I talk about it all the time.

Nadine Vogel: Right, you know implicit bias and and and that's a perfect example of it, and you know levi I would love to know your your thoughts because.

Nadine Vogel: You know today and in today's current wars, more and more men and women come back disabled than before, because many years ago, you know people would die in the field.

Nadine Vogel: Today you have a different medical technology that they're coming back and but coming back more with disabilities, whether it's post traumatic stress or amputee or something so.

Nadine Vogel: what's your perspective on how you think that's changed and how you think some of that bias, perhaps has changed if it's changed at all.

Levi Miller: Well, I think it changed a little bit nadine because these soldiers to get out now they have to go through maybe six six months or more, you know be deprogrammed whereas us Vietnam veterans we come back 13 months fighting and they throw you on the street and your brain your brain don't work like that.

Levi Miller: yeah so you know you don't have a lot you don't have a lot of problems and a lot of problems when I came out.

Levi Miller: Oh, I never did do drugs in the service but I guess about 80% of you know, we did they did do drugs in a service, but I have a lot of problem.

Levi Miller: When I came home I couldn't get along with anybody, I listen to my family or wife you know I could talk to them, but other people I couldn't I couldn't relate to I couldn't relate to at all.

Levi Miller: And I didn't start telling my experience, until maybe about three years ago, because I was told shut up don't say anything.

Levi Miller: And I know when I first got out I did a lot of classfied stuff I couldn't even talk to a psychologist when I came out.

Nadine Vogel: Wow.

Levi Miller: You know, unless I got locked up, I think they lifted, that in 1986

Nadine Vogel: Wow.

Levi Miller: I was in places that that the United States said we wasn't there, but we was there.

Levi Miller: Oh, you know it would just a mess I was sitting up at night in my bedroom with my first wife and stood up all night, all we thought was that the enemy was coming through I wouldn't get no sleep.

Levi Miller: Oh.

Levi Miller: My wife my well my wife now especially her, she helped she helped of other women's that their husband have been in the service with ptsd she she's a counselor so she teach them.

Levi Miller: But we put our wives through a lot of lot of I'm telling ya lot of trouble anger and a lot of trouble, you know, to try to understand us.

Nadine Vogel: Right right so so from what I hear then you're feeling like you know because of what the military is doing today.

Nadine Vogel: To help transition make that transition somewhat easier um that probably isn't as much bias, but i'm curious if we drill down further specifically to service disabled veterans today,

Levi Miller: Yes

Nadine Vogel: What's your perspective on that.

Levi Miller: well.

Levi Miller: We we we disabled veterans, we need better job we need more training Oh, we need better health care because i'm gonna tell you something a lot of soldiers that went to Vietnam into regular army, we can go to the V-A the V-A won't tell us tell us what kind of benefits we got.

Norma Stanley: I've heard that.

Levi Miller: Yeah i'm the reason I got my ID I had to go through Congress, I had to get me a lawyer, because I was turn down probably about four times.

Levi Miller: um I was infected with Agent Orange, which was a chemical.

Levi Miller: Oh it's do like 21 diseases, I got 11 out of them.

Nadine Vogel: Oh, my gosh.

Norma Stanley: Wow.

Levi Miller: I know when I first went to the doctor, you know ahead of me paying my medical bill and some medication maybe pay $500 a month.

Nadine Vogel: Oh, my gosh.

Levi Miller: Then my lawyer in Congress said no you fought in the war, you know your stuff should be free.

Nadine Vogel: Right.

Levi Miller: But you got to tell the V-A you go down there V-A not gonna tell you nothing and not going to tell you anything, you got to know that you got to tell them.

Nadine Vogel: Right. Right. Now, of course, if we.

Nadine Vogel: haven't veteran who's now working in private sector, then you know more than likely they would have their group health insurance, you know, through their employer and i'm assuming that would help dramatically.

Levi Miller: Yes, you can remember like agent orange the United States didn't claim agent orange until 2002 most most of Vietnam veterans was like 65 to 75

Nadine Vogel: Right.

Levi Miller: And we put our claim in what they do, they tried, but most of the fellas had died you know waiting on their claim 10, 15 years, 20 years.

Nadine Vogel: Uh hm.

Levi Miller: years.

Levi Miller: You know so.

Nadine Vogel: Right.

Levi Miller: And what they try to do the soldiers, they they try to get them to to be able to submit a little quicker.

Levi Miller: But you know they they catch a lot they catch a lot of trouble too they not getting their medical like they supposed to.

Nadine Vogel: Right right well Levi you know before we had this interview.

Nadine Vogel: Norma was sharing with me all of the amazing things that that you've done with your life as a result of these experiences.

Nadine Vogel: To to benefit others, and you know you start talking about other veterans and what you're doing there.

Nadine Vogel: But to me but to me what you are doing is a ministry right, it is a ministry for people.

NORMA STANLEY: It is absolutely a ministry it's important because so many of out vets are not getting the help.

Levi Miller: That's right.

NORMA STANLEY: But what he's doing is a ministry absolutely.

Nadine Vogel: Right right exactly, and I think that that is critical critical to having the success that you're having. You know.

Nadine Vogel: I need to go on break, but when we come back I do want to talk about that because.

Levi Miller: Yes, I'll talk.

Nadine Vogel: Because I think that you know when we say ministry people immediately think religion right.

Nadine Vogel: But, but I think that what you're doing has the same impact.

Nadine Vogel: Right. To these veterans to these service disabled veterans and their families, and I just I want to talk about that because.

Nadine Vogel: For norma and myself, and we work quite a bit with veterans with service disabled veterans, especially within corporate America.

Nadine Vogel: And i'd love to talk a little bit more about that as well about you know the impact of that so let's go to commercial break and everybody stay tuned don't go anywhere, we will come back this is nadine vogel with norma Stanley and our guest today, Levi Miller.

Voiceover: And now it's time for a commercial break.

Voiceover: And now back to our show.

Nadine Vogel: Well Hello everyone welcome back to today's episode of disabled lives matter and don't forget it's more than a podcast, it is a movement.

Nadine Vogel: And part of today's movement is talking with our guest Levi Miller and i'm going to turn it back over to norma to continue this amazing conversation.

NORMA STANLEY: Well, thanks, and I just wanted to bring up the fact that levi's you know I guess determination to overcome.

NORMA STANLEY: Led to him doing a lot of amazing things, including starting this company that helped to employ people with disabilities to also a part of the entertainment industry at some point.

NORMA STANLEY: and doing some things in that area before you got into radio so tell us a little bit about that really quickly and we can get back to seeing how you how it led to what you're doing now.

Levi Miller: Okay. The first thing I'd like I say though I love you all, and I know all my veteran brothers and sisters love you all for what you all doing.

Levi Miller: Oh there's not many people that give us, you know talk to us give us help back, we need that most of all so your program I love it, you know I love what you all doing.

Levi Miller: And then start talking about what I was doing I had really bad ptsd like to 2013 of about five operation and it put me in a very depressing mood very depressed.

Levi Miller: ah you know, looking at the ceiling all day not wanting to talk anybody about it, nor do anything and then my wife and a good friend of mine.

Levi Miller: They would tell me say.

Levi Miller: That my wife told me so you need to go on radio, you need to start talking about about the veterans.

Levi Miller: She demand me, you know how you ladies, are you you all demand it, and we have to do it.

Norma Stanley: We're persuasive.

Levi Miller: And, as I got started, I told I don't want do no radio leave alone talking about radio, then she said, you could open a veterans show you could talk about some of the problems you having and you know I got into that and now I love it I won't leave it.

Levi Miller: Uh cause now I get you know, to express to us soldiers you know our brothers and sisters what to do, how to go about doin' it and everything.

Levi Miller: So we built a platform, we got who WLMRDB show we reach veterans.

Levi Miller: All over the United States and overseas.

Levi Miller: Uh, you know, with past soldiers you know from the days back when I was in and future soldiers, that is what we're doing now, and so we do all of that, and it is very satisfying to me to knowing that I can you know you know when they disabled, knowing that I can be some help.

Levi Miller: Because you don't see help, like this, you know, or we don't get many programs, you know, like you and norma got nadine, so you know this, you know this this this really help us.

NORMA STANLEY: Well you know my step son was in the military and he served in Kuwait and then he came back, he would tell me that you know he always slept with one eye open.

NORMA STANLEY: And you know, because there were always bombs going off, you know they always had to be ready to go he's a 42 years old, now, and I know he's dealing with ptsd.

Levi Miller: He do.

NORMA STANLEY: From that experience he wasn't in an actual war but whatever he had to do, when he was in Iran Kuwait area it affected him and it's still affecting him.

NORMA STANLEY: and his life, right now, and so you're like you're saying it's important for them to get the information that they need, so that they can.

NORMA STANLEY: reclaim their lives because whatever they dealt with and wherever they saw it, it really mess with them mentally which is you know causes them mental illness in some capacity that's not diagnosed in many cases.

Levi Miller: Right and I guarantee you he have ptsd I can guarantee that.

Levi Miller: Even, if they go through training of basic training he I-T, you know you start picking up stuff then because you know they drill you to be brainwashed and then you see some stuff or you know some stuff happening that you know that's really not real you know, but you have to go through all of it.

Levi Miller: Yes, you know you go to war just being in the service, you will get that ptsd.

Norma Stanley: Yeah they see stuff we don't hear about on the news.

Levi Miller: Shell shock. They used to say shell shock.

Levi Miller: Before they came to ptsd.

NORMA STANLEY: yeah yeah they can't talk about everything that's actually being seen experienced um with by by some of these soldiers male and female so it's a real issue.

NORMA STANLEY: it's a real issue, and so you know.

NORMA STANLEY: kudos to what you're trying to do at least to.

NORMA STANLEY: not become homeless or if they are homeless aleast find a way to make some money that they can you know take care of themselves and their families.

NORMA STANLEY: So kudos to you and your company construction company that's been doing that. You say it's a non profit your. Construction company.

Levi Miller: We have a nonprofit that what we do with that nonprofit we take entertainment shows to military bases.

Levi Miller: Or we may take them uh my wife, has a more people ptsd counselor or we may put on an entertainment show there.

Nadine Vogel: Oh wow.

Levi Miller: We may take stage plays to bases.

Levi Miller: We haven't had a trip to go overseas yet so we working on that process.

Levi Miller: But uh we do all of that, because I have another company too like a Boomer TV on roku devices.

Levi Miller: Oh, I have shows there entertainment shows there I have veterans

Levi Miller: Stories on there also too.

Nadine Vogel: i'm curious of the individuals that you employ and work with what percentage would you say have service related disabilities and then of that you know how is that different for you way what, what do you find as an employer, if anything, you need to do differently.

Levi Miller: I need to help more than what i've done. You know I don't ever feel like i'm doing I don't feel like i'm doing enough.

Nadine Vogel: Right.

Levi Miller: hey hey you know that the feeling I have because God bless me, you know the old comradery this, you know.

Levi Miller: stuff and stuff like that and i'm Like you, I like to give back and when we get back

Nadine Vogel: Right.

Levi Miller: You know I don't I don't want to be the spotlight the limelight I just want to give back.

Nadine Vogel: Right right and I completely get that from everything that you have shared with us, but i'm just curious as an employer, what do you find that you may need to do differently.

Nadine Vogel: Or that or how the experience the work experience is different.

Nadine Vogel: If the if the veteran has a disability or not, um then obviously different yet if it's visible or invisible.

Levi Miller: Yes, well, with you know veteran disability, you know I do a lot of talking with them, I try to be more than an employer I try to be their best friend.

Levi Miller: We call it war buddies.

Levi Miller: yeah yeah and um you know if you call me today, you need help and I got it i'm gonna help you that that's you know that's they way we do it.

Levi Miller: And I find that I build a better relationship and they know where i'm coming from because you know.

Levi Miller: They don't you know they got it and they know exactly where i'm coming from and we can kind of relate a little bit more closer you know when you've been there you've talked to somebody there you can become closer, because a lot of soldiers, they won't talk to you.

Levi Miller: Ah.

Levi Miller: Unless you know you've been in the military.

Levi Miller: I see the reason for that like when I came out, we talked to other people then they'll laugh you know.

Levi Miller: don't believe you know don't believe what we tell them then we give upset, so we wanna hurt people.

Levi Miller: So yeah oh it was drastic yeah.

NORMA STANLEY: Well like I said, the little bit i've seen just observing my stepson I know there's some situations that he needs to talk about and he won't.

NORMA STANLEY: And he won't so that's just reality.

Levi Miller: I heard of it, we need that we really need to talk about it that's why I say yo show you know the few other show that's what you all do cause us veterans, we need to talk about cause the longer we keep it in us it's just gonna get worse.

Levi Miller: And I learned that.

Nadine Vogel: And do you do you feel I mean Covid lets us, you know we're all dealing with covid now do you feel like covid is having.

Nadine Vogel: A greater impact um in any way for veterans than than the rest of us, I mean obviously everybody's talking about how they're experiencing anxiety and depression, you know so many things with the ambiguity.

Levi Miller: Right.

Nadine Vogel: Of what's happening, but i'm just wondering from your perspective and the vets you work with if you think that is a different hit on them, for some reason.

Levi Miller: Yes, I think, so too, because a lot of veterans can't get no healthcare they get sick, they can't go to the hospital aw.

Levi Miller: You know it's a lot going on, but as for me covid didn't really mess with me to much because I stay in the House anyway.

Levi Miller: So.

Levi Miller: I stay in the house, you know doing what I got to do.

Levi Miller: A know some that it did hurt a lot of people couldn't find no job and they was scared to find jobs all the veterans not getting, you know they fight like hell, excuse the cursing, to get that money you know, to support them and their family.

Levi Miller: And I know it did hurt a lot of love people to also to about not getting out and work that people are scared to go out.

Levi Miller: You know, they get sick because they don't have they don't have the money, you know they don't have the money.

Norma Stanley: Yeah.

Levi Miller: You know, and when you got a family.

Levi Miller: You know, that's another thing, you know you can't support your family's especially the disabled veteran that do a lot to us to.

Levi Miller: You know that, do a lot to us too that we can support our family.

Nadine Vogel: Right.

Levi Miller: You know I got lucky, I sent.

Levi Miller: Uh two my daughters to college and paid for. You know by the settlement that I got one of them is a doctor now one is a dental hygienists.

Nadine Vogel: Wow.

Levi Miller: And you know and they doing very good.

Nadine Vogel: Good.

Levi Miller: But a lot us you know, the veterans when they do get the money from the V-A or get their claim a lot of you know, spend it all on drugs well you know.

NORMA STANLEY: that's that's where their minds are.

Levi Miller: Right, because you try to do anything with to get your

Levi Miller: Mind off that depression, and you know, and everything else. So you do you do anything that you know they take drugs because you're trying to get rid of the pain that they have.

Nadine Vogel: Right right and that's you know we we have at springboard we have a whole practice around mental health and and one of the things you know we tell folks is that you know you don't see mental health issues right.

Nadine Vogel: it's emotions feelings we don't see feelings and thoughts.

Levi Miller: No.

Nadine Vogel: It's important. Right. It's just a important to address as the physical disabilities, but unfortunately society still has a stigma.

Nadine Vogel: I think with that, and so, then that adds to that stigma that really you're talking about you know coming back from war, and I not getting support it's just you know it's something that I think has improved a lot over the years, but hasn't gone away at all.

Levi Miller: Right right.

Levi Miller: And let me tell you something funny here, maybe two years ago.

Levi Miller: I applied for a scooter.

Levi Miller: You know they wouldn't give me a scooter.

Levi Miller: I couldn't believe what the lady say at the V-A I thought they're gonna lock me up.

Levi Miller: And then later finally told me she go give me my scooter.

Levi Miller: And you know, like, I told her you healthy, you can walk around with your husband you can go anywhere way you want to go.

Nadine Vogel: Right.

Levi Miller: You know I I can't barely go anywhere you go to walmart and you have to wait on a scooter.

Nadine Vogel: Oh, my.

Levi Miller: And I just went off, I went off.

Nadine Vogel: Oh, my gosh.

Norma Stanley. Wow.

Nadine Vogel: You know, you know we have to be kind to one another, I don't care what the situation is, you know I think first and foremost, people have to just learn how to be kind.

Levi Miller: Right.

Nadine Vogel: Right. Cause it's comments like that are not kind any way, shape or form and imagine if Levi, you know you when she said that to you, you are actively experiencing mental health issues.

Nadine Vogel: That could have easly escalated right.

Levi Miller: Yes.

Nadine Vogel. And some people don't understand for some reason.

Levi Miller: And it happens us at the V-A there is a lot of us, you know that escalate and you could wind up in the hospital right, you know it can it can get rough at times.

Nadine Vogel: I bet it can.

Levi Miller: There's a lot of personnel there.

Levi Miller: That never been in the service.

Nadine Vogel: Right.

Levi Miller: Well and most of them don't even know about Agent Orange for the older veteran.

Nadine Vogel: Right right.

Levi Miller: I was lucky. You counsel them, you don't know, even know.

Levi Miller: You need to know what this, solider went through.

Nadine Vogel: Right right. Absolutely.

Levi Miller: You know to talk to them any kinda way, it don't work. No.

Nadine Vogel: Oh, my goodness, I you know I hate to say this, but we are out of time I cannot believe this half hour has flown.

Nadine Vogel: I looked at the clock and was like where did that time go. oh my gosh Levi think you so much for sharing your story.

Levi Miller: Okay.

Nadine Vogel: Your personal passion and mission and ministry to work with help support and encourage veterans and especially veterans with service disabilities, we are so appreciative of what you do.

Levi Miller: Okay.

Nadine Vogel: And appreciate you sharing your story.

Nadine Vogel: norma Thank you.

Nadine Vogel: Thank you for bringing Levi to us.

Levi Miller: Okay. May I say this before I leave.

Nadine Vogel: Yeah please.

Levi Miller: You all were so easy to talk to.

Levi Miller: If I had people like you talk to me like you talking to a back in.

Levi Miller: Back in the day I would have been a lot better.

Levi Miller: And you know.

Levi Miller: I say that from my heart. I got tears in my eyes now. I say thing from my heart.

Nadine Vogel: Thank you Levi it was an absolute.

Nadine Vogel: Pleasure, and I know that our listeners are going to feel exactly the same way so with that norma my God it's another episode of disabled lives matter remember it's more than a podcast it.

Nadine Vogel: it's a movement, and we need you all to join the movement so until next time bye everybody.

NORMA STANLEY: Have a blessed one, bye bye.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Disabled Lives Matter Season 1, Episode 32 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Lionel Woodyard

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley… yay!

Nadine Vogel: Hello Hello everyone I am nadine vogel your co host of disabled lives matter and joining me today we have who do we have norma.

NORMA STANLEY: it's norma stanley Hello how's everybody today.

Nadine Vogel: norma you and I just have so much fun doing this don't we.

Nadine Vogel: disable lives matter is a podcast, but it is more than a podcast, it is a movement, and in order to really have a successful movement, you have to have amazing people on your show, and we are doing that, today, with Lionel woodyard Lionel, thank you for joining us today.

Lionel Woodyard: Thank you for allowing me and ask i'm glad to be a part.

Nadine Vogel: Oh good good so let's start with the fact that, as far as I know you do not have a disability, but are in fact a disability advocate Is that correct.

Lionel Woodyard: I work in an environment with people with disabilities.

Lionel Woodyard: But most of them have some unknown disability seen and not seeing.

Lionel Woodyard: and are.

Lionel Woodyard: capable eligible to possibly at some point in your life become a part of the disabled community.

Nadine Vogel: Absolutely it's one of those communities we can all join.

Lionel Woodyard: I didn't learn that until later so i'm not being smart, but we all are capable of possible candidates to be a part of a Community that is the largest minority community on the planet.

Nadine Vogel: Absolutely it's one of those groups any of us can join at any time.

Nadine Vogel: Now you are i'll say your day job you own a limo and transportation company correct.

Lionel Woodyard: Well i'm retired from Clark Atlanta university.

Lionel Woodyard: But because of the retirement I started Atlanta Chauffeur Service, which is a bible business now Atlanta Chauffer Service based in Atlanta, but we do transportation anywhere on the planet.

Nadine Vogel: Oh wow.

Lionel Woodyard: So that business still thrives but because of Covid we haven't been very very active.

Lionel Woodyard: So I do some.

Lionel Woodyard: Other things in the transportation arena.

Nadine Vogel: got it got it so share with us, if you will, your introduction to the disability community.

Lionel Woodyard: In 1970 I attended mobile state Community college well there, it was junior high.

Lionel Woodyard: And I saw a sign it's it's summer job camp New York, I had no possible.

Lionel Woodyard: Summer job opportunity that i'm wantedto pursue.

Lionel Woodyard: camp i've been I mean eagle scout.

Lionel Woodyard: work.

Lionel Woodyard: At a boy scout camp six consecutive summers as an eagle scout but the hook was New York.

Lionel Woodyard: going to New York from Alabama.

Lionel Woodyard: Okay flying on the airplane which I hadn't done nor anyone in my family had done that part of the story is quite interesting but but I worked at a camp in upstate New York, we part of the story.

Lionel Woodyard: called amounts in New York and the name of the camp is Jened camp Jened and it says camp jened for the handicap, which was the word back then.

Lionel Woodyard: My in my interview with Mr gene Morgan who hired me to work at this camp I don't recall him, saying that the camp was for handicap kids and adults yet that was part of the interview would not have mattered, I was interested in getting out of out of Alabama.

Lionel Woodyard: Looking back over it now I don't think that I got a job, I think that I have an invitation.

Lionel Woodyard: To be there as.

Lionel Woodyard: those others who came to be there in summer 1970 they were invited by something really, really special and we call that the jened spirit invited us.

Nadine Vogel: Okay, very cool so tell us to tell us what was it like being part of that camp.

Lionel Woodyard: It freed me the first time I felt a part of a Community of the human community.

Lionel Woodyard: Cause growing up in mobile Alabama in 1970 things were still new in terms of.

Lionel Woodyard: Diversity in terms of access being able to go places and do things you know I grew up in the 50s and 60s in mobile Alabama in the south.

Lionel Woodyard: Where there were laws that said, people could not be together, you could even sit on a park bench with someone who was not the same race that you are you know that I grew up in that environment so i'm going to this camp.

Lionel Woodyard: For the first time interacting with people that were none African American.

Lionel Woodyard: That was very, very new and refreshing to me let me tell you something i've worked at the camp, the boy scout team as an eagle scout who prior to working on.

Lionel Woodyard: at jened I work as an eagle scout prior to going to jened this is what happened there were two camps pushmataha and leon roberts they were both segregated

Nadine Vogel: Ah.

Lionel Woodyard: Leon Roberts was the black camp pushmataha was a white camp united way said, unless you stop this segregated scouting we're not going to fund you so they built one big camp.

Lionel Woodyard: at Camp Leon Roberts eagle scout Lionel taught swimming and camp mirrored that.

Lionel Woodyard: At the new White can eagle scout Lionel worked in the commissary washing dishes.

Lionel Woodyard: job is not treated as an equal to the other staff members right when I went to Camp Jened

Nadine Vogel: Umm.

Lionel Woodyard: I was hired as a counselor and a swimming instructor that's exactly what I did I became a counselor and swimming instructor I remember the day we arrived it was a Sunday Sunday night we flew up from mobile Alabama.

Lionel Woodyard: No one in my group there was six of us had ever flown on a plane.

Nadine Vogel: So it sounds like it was inclusive, though, for you on so many different levels.

Lionel Woodyard: It was totally inclusive, it was inclusive.

Lionel Woodyard: In terms of diversity, and it was inclusive in terms of our cultural inclusiveness.

Lionel Woodyard: In terms of being exposed to a new culture, because most people never meet anyone with a disability right.

Nadine Vogel: Right So what did you learn from that, what did you learn about the disability community by being that camp counselor.

Lionel Woodyard: First person who I shook hands with the camp was a counselor named Paul Goodman he was born with.

Lionel Woodyard: A disability his hands was not his hand was not a hand

Lionel Woodyard: But what he had he stuck out to shake.

Lionel Woodyard: So I grasped it and shook and said okay all right, you know he didn't have any inhibitions about who he was.

Nadine Vogel: Right.

Lionel Woodyard: And his gesture Jewish guy I guess it was that of acceptance, so I now, felt, oh Okay, this is going to be different.

Nadine Vogel: Right.

Lionel Woodyard: So I gain a sense of freedom and and inclusion.

Nadine Vogel: Did you have.

Nadine Vogel: So beyond beyond that inclusive nature, would you say that they were Aha moments for you they're like oh my gosh oh my gosh like just.

Lionel Woodyard: During the training. We were there for an entire week training to work with kids and adults who would be coming to the camp from New York City with disabilities, if you don't know what a disability is but that one or 2, 3, 4 people riding around getting around the camp, who are in wheelchairs.

Nadine Vogel: Hum..

Lionel Woodyard: And i'll say okay. Because most of us have never seen anyone with with my grandmother was in a wheelchair, but she was not disabled right right she was grandma in a wheelchair, we didn't no.

Nadine Vogel: [laughter]

Lionel Woodyard: Okay, but here they are 200 wheelchair, people are people in wheelchairs coming in one week's time and there are a lot of things and you're going to have to do.

Lionel Woodyard: As a counselor to make the lives work so in order for you to understand what this is, we have a Litmus tests, they took a hat and you reached in and pulled out your disability for twenty four hours

Nadine Vogel: Yep.

Lionel Woodyard: Okay, so if you were blind your disability was being visually impaired, they visually impaired, you.

Lionel Woodyard: For twenty-four hours and everything you did was that I was cerebral palsy.

Lionel Woodyard: And it put me in a wheelchair, and they really, really tied my legs, so I couldn't and my arms.

Lionel Woodyard: Okay.

Nadine Vogel: Right.

Lionel Woodyard: And I had to allow someone to take me to the bathroom, okay.

Nadine Vogel: To take me to the shower.

Nadine Vogel: wow.

Lionel Woodyard: And to feed me.

Lionel Woodyard: You see, the reason I said I was invited because some people who showed up. couldn't do it

Nadine Vogel: yeah yeah.

Lionel Woodyard: I stayed I accepted the invitation and got an understanding of what would be happening so my Aha moment is Aha okay your ultimate humanity comes out when you.

Lionel Woodyard: Work with someone with a disability, your ultimate because if you wash someone face other than yours, you have to do it as if you're washing your own face.

Nadine Vogel: Absolutely.

Lionel Woodyard: Taking someone to the bathroom.

Nadine Vogel: Absolutely absolutely now that's that's really important, thank you for sharing that, so we have to just take a very short break so for our listeners do not go away we're having this amazing conversation.

Nadine Vogel: And, and when we come back we're going to talk about the movie that's been made with some of your old friends and talk about how to this movement keeps moving forward so stay tuned everybody will be right back.

Voiceover: And now it's time for a commercial break.

Voiceover: And now back to our show.

Nadine Vogel: Hello everyone, this is nadine vogel and norma Stanley.

NORMA STANLEY: Hey.

Nadine Vogel: Back with another great episode of disabled lives matter and we are talking with Lionel woodyard and norma I think you had some questions you'd like to ask, Lionel.

NORMA STANLEY: Well yeah I mean I just love the fact that Lionel was able to stay in touch with some of the people, he became friends with back at Camp Jened, and some of these people now internationally known disability activists and you know, Oscar nominated directors tell us about.

NORMA STANLEY: Those people and how it feels to be connected, with those people what's going on now.

Lionel Woodyard: Well, we were more family.

Nadine Vogel: yeah.

Lionel Woodyard: We were a family.

Lionel Woodyard: I went up summer 70.

Lionel Woodyard: I went back up summer 71.

Lionel Woodyard: I went back up summer 72 thinking that that would be my last time before getting a job that was the year that I graduated college and I went back up.

Lionel Woodyard: Um, the first year.

Lionel Woodyard: I you became so connected to the camp outside, in addition to the Councelors but, more importantly, the campus I still remember Clifford Seagle, Calvin Cruthers, Scott Menthal, Edmond Cremmins, ah Carrie Walker.

Lionel Woodyard: Um... I thought this guy's today Lopez john McCormick who taught me sign in one of them no in one day because we you learn the ABC's with john you know.

Nadine Vogel: Right.

Lionel Woodyard: It would be years I would be driving and I would I taught all my children how to do the ABC's in sign.

Nadine Vogel: Wow.

Lionel Woodyard: But you remember them because they became an intricate part of who you are.

Nadine Vogel: Right.

Lionel Woodyard: I could still hear Clifford Seagle's voice.

NORMA STANLEY: But you also know people like miss Judy Heumann and Jim LeBrecht.

NORMA STANLEY: Part of the netflix documentary Oscar nominated documentary crip camp, and you still stayed friends with them for all these years.

Lionel Woodyard: Okay let's go with this summer 72 after the summer 72 I moved from Alabama to New York, I live with Larry Allison who's on the film the big guy that was digging holes for the kids there.

Lionel Woodyard: he's the greatest guy in the world, he was a person that that may it understood that the disability, the world was disabled.

Lionel Woodyard: Yes, we didn't provide access for the people it wasn't the people that had a problem it was the world.

Nadine Vogel: Yep.

Lionel Woodyard: And he became the New York City czar for disability, so when I moved to New York, I live in his home jack geckelman or sheldon corey Jim LaBecht. Brecht was my camper.

Nadine Vogel: [laughter].

Lionel Woodyard: On Jim LaBrecht was my camper.

Nadine Vogel: wow.

Lionel Woodyard: I have a picture of Jim LaBrecht and I we work just just every day you woke up you were on it until sunup to sundown you were. doing things and experiences.

Nadine Vogel: And Jim is the Co director of the film I think crip camp right.

Lionel Woodyard: Jim is a Co director of the film from.

Lionel Woodyard: High School went to California for college he went to San Diego state to major in music in our in sound he wanted to be the sound technician for the grateful dead.

Nadine Vogel: [laughter].

Lionel Woodyard: And, most of the New York community, that had started disabled in action moved out to California.

Lionel Woodyard: Judy Heumann on Judy Judy is the most courageous bad ass woman you ever want to meet period if I had a knife fight in an alley I want Judy Heumann in that fight with me.

Nadine Vogel: [laughter].

Lionel Woodyard: she's such a.

Lionel Woodyard: sweet really dynamic woman who refuse to be denied.

Lionel Woodyard: Man she she got a degree in education, when she was told to major in social work she didn't want to major in social work she wanted to be a teacher, she was told she couldn't be a teacher because she's a fire hazzard.

Lionel Woodyard: Yeah. You know, in the interview that Judy Heuman when Judy Heumann got her job of started being a.

Lionel Woodyard: There were people like myself and Sheldon Court supposedly non disabled people who were part of the organization, but the organization was run by individuals with disabilities.

Lionel Woodyard: So, so we stayed in touch over the years, even through phone calls and you just heard, where people were, but when the Internet happened then we were able to really connect but I've been going out to California visiting Jim for years, and he to to would be here in the summer.

Nadine Vogel: wow wow that's that's amazing I you know, I think.

Nadine Vogel: you're listening to this, I it almost makes me want to ask every single person.

Nadine Vogel: To do something in the disability Community if they're not disabled themselves or don't have a disabled family member to do something in the disability Community to be able to feel that invitation that you felt.

Nadine Vogel: Right.

Lionel Woodyard: Yeah.

Nadine Vogel: And come away with the learnings and the perspective and appreciation that that you've come away with because that's what we're missing we're missing that from a human rights perspective we're missing it from a diversity perspective I don't know how you feel about that.

Lionel Woodyard: Well. I think that the world has to open up so that people with disabilities, become more visible.

Nadine Vogel: yep.

Lionel Woodyard: You understand. See still my nephew Malcolm has cerebral palsy.

Lionel Woodyard: Malcolm is. 26-27 he went to school at Monday's Meal, Monday's Meal is the name of the school here and and and our Atlanta he went to regular school.

Nadine Vogel: uh huh.

Lionel Woodyard: Okay. His mother has made Malcolm an intricate part of the family and of the Community and the same with Norma.

Lionel Woodyard: Norma's daughter Sierra is an intricate part of the family and the Community, but for every Sierra Stanley and for every Malcolm Janckie Janckie there 34,000 other kids who we never see and a lot of it has to do with parenting.

Nadine Vogel: Yes.

Lionel Woodyard: Okay. Some parents don't want their children, but either they are over protective, not over protecting protecting them, you know, but the more we see and become exposed to people with.

Nadine Vogel: Yes.

Lionel Woodyard: visible disabilities, we recognize the person before we recognize the disability.

Nadine Vogel: absolutely.

Lionel Woodyard: Accepting, the world will become for disabilities, I get pissed off with you know we have a look at the grocery store and you see a car parked in a disabled parking.

Nadine Vogel: Yup.

Lionel Woodyard: I walk around to see.

Nadine Vogel: [laughter].

Lionel Woodyard: I walk around the card to see if they have a tag. I say Oh, maybe I see him in the store. If they're not I curse.

Nadine Vogel: yeah yeah.

Nadine Vogel: yeah I know because you know, like you said earlier, you know it's one of those.

Nadine Vogel: it's one of those communities that anyone can join at any time yet.

Nadine Vogel: If you look how people with disabilities are often treated it's no one wants to join that Community unless, of course, like to your point oh it's benefiting me by parking in an accessible spot when I when I shouldn't be.

Nadine Vogel: You know I drive it's like nails on a chalkboard to me, so I agree with you completely.

NORMA STANLEY: You know what no we gotta go soon, but I wanted Lionel to share, about the historic site that they're doing at camp jened.

Nadine Vogel: Oh yeah please.

Lionel Woodyard: All right, as you know.

Lionel Woodyard: Camp jened is why there was a film called crip camp.

Lionel Woodyard: yep it's based on the movement that came out of crip camp, not that it was the beginning of the movement, it was a movement that was sparked more set on fire by by camp Jened by the likes of Judy Heumann and Larry Allison and Denise Denise Sharod Jacobson now, who was hoot hot.

Lionel Woodyard: woman.

Lionel Woodyard: I used to tell Denise's husband, that I love your wife.

Nadine Vogel: [laughter].

Lionel Woodyard: Densie says, if you remember in the film was just phenomenal.

Nadine Vogel: yeah .

Lionel Woodyard: but oh.

Lionel Woodyard: Oh.

Lionel Woodyard: You know I'm over 71 what was the question, I got the question I think.

NORMA STANLEY: it's about the historic. They are making it a historic site, camp jened.

Lionel Woodyard: The film and the camp.

Lionel Woodyard: I talk with people within the Community as event, we need to get a historic a marker because half those people are going to want to know where is the camp.

Nadine Vogel: Absolutely.

Lionel Woodyard: So, so we call up to the hunter mountain and we were very, very warmly received by.

Lionel Woodyard: By DD Fork it's this DD Fork which is the first person I talked to.

Lionel Woodyard: Linda Gary an attorney that's a part of the city council up there.

Lionel Woodyard: And Gary. Slovsky

Lionel Woodyard: I'm not sure how he

Lionel Woodyard: pronounces it.

Lionel Woodyard: I think this is incorrect.

Lionel Woodyard: They they they They grabbed the ball and got it rolling.

Nadine Vogel: Then the things that had to be done, the state.

Lionel Woodyard: of New York had to get involved.

Lionel Woodyard: But the site of camp jened which is now a construction company.

Lionel Woodyard: will be designated as a historic place in the State of New York October 2 2021 and I'll be there i'm going to M-C the dedication and hopefully read a letter from Barack Obama.

Lionel Woodyard: Barack and Michelle Obama became Executive Director of the film crip camp we have right now 30 odd people that are from the Jened family that are coming from as far away as California and Arizona.

Lionel Woodyard: We have had heard the camp camp America counselors from Europe, a woman named Chris and a guy from Poland, who worked at the camp have seen some of the publicity and they're they're not going to be there, but their wishes are going to be there.

Lionel Woodyard: We commissioned I commissioned we commissioned a t-shirt that says.

Lionel Woodyard: Camp Camp Jened

Nadine Vogel: uh huh.

Lionel Woodyard: a spirit.

Lionel Woodyard: That sparked the disability.

Lionel Woodyard: rights movement.

Nadine Vogel: Nice

Lionel Woodyard: changing the world forever.

Nadine Vogel: I love it.

Lionel Woodyard: Camp Jened spirit lives still.

Nadine Vogel: Awe, I love it.

Lionel Woodyard: Exists two wheelchairs on there. That shirt is available if you email because we don't have anything online.

Lionel Woodyard: But for those out there who are interested in getting this once is. This this.

Lionel Woodyard: Is family.

Nadine Vogel: yes.

Lionel Woodyard: Should, Join the Jened family and get a shirt.

Lionel Woodyard: Well, October second or after and October 2 from this point on they all will be camp jened day.

Nadine Vogel: I love I love it I love it and norma, we need to ask, we definitely need to ask um.

Nadine Vogel: Who else wants to get the shirts, you know, we should talk to some folks about doing well.

Lionel Woodyard: i'll give you my email address can.

NORMA STANLEY: Do that right now.

Lionel Woodyard: Yes, send it, send it to lionelje@aol.com yeah i'm still AOL.

Lionel Woodyard: Or send it to Lionelwoodyard@gmail.com

Lionel Woodyard: give me your size your mailing address, and we will get back to you phone numbers are better for me cause I call people.

Nadine Vogel: yeah that sounds that sounds great because we actually have Judy Heumann on speaking she's like a keynote speaker at a small disability event that springboard is my company is hosting on Tuesday virtually so.

Nadine Vogel: This is a perfect timing.

Lionel Woodyard: Tell her you talked to Lionel. Have you read judy's Book.

Nadine Vogel: Yes.

Lionel Woodyard: That book is off the chain.

Nadine Vogel: I know, I know.

Lionel Woodyard: I know often times I listened to Judy's books, I like to listen audiblely.

Nadine Vogel: Right.

Lionel Woodyard: The woman who's reading judy's book is almost as feisty, as Judy.

Lionel Woodyard: that's my girl I love July, i've been in touch with her since 1970 we kept in touch.

Nadine Vogel: Well, I will definitely tell you said hello, this is perfect timing and Lionel Thank you so so much for joining us today, I think that I know that our listeners are going to benefit from hearing from your story and and I know I did I just enjoy just talking with you norma same here right.

NORMA STANLEY: yeah well you know Lionel and I have become pretty good friends, so I appreciate him taking time out of his schedule to participate with us on disabled lives matter and we look forward to learning more about that historic site at camp jened, so thank you, Lionel.

Nadine Vogel: Absolutely.

Lionel Woodyard: Here about crip camp, see crip camp and you'll see the family.

Nadine Vogel: yeah absolutely.

Nadine Vogel: Thank you once again and for our listeners, we know that you enjoyed this episode and we will see you next time on disabled lives matter bye everybody.

NORMA STANLEY: bye bye be blessed

Lionel Woodyard: Thank you.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Disabled Lives Matter Season 1, Episode 31 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Erica Hawkins

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley… yay!

Nadine Vogel: Hello Hello everyone, this is nadine vogel and I am joined by the fabulous norma Stanley and norma you want to say hello to everybody.

NORMA STANLEY: Hello everyone it's good to be back with disabled lives matter.

Nadine Vogel: yep and together we are your hosts of what is not just a podcast but a movement and today the woman who is going to help us with this movement is Erica Hawkins Erica welcome to the show.

Autumn's Gift Respite Care: Thank you for having me nadine.

Nadine Vogel: Absolutely, so now you have if I if I know correctly you're a special needs mom like Norma and myself and your daughter has autism.

Autumn's Gift Respite Care: Yes, so autum does have autism um in addition to everything else that kind of goes along with that gamut.

Autumn's Gift Respite Care: So the ADHD and the sensory processing so yeah.

Nadine Vogel: And how old is autumn.

Autumn's Gift Respite Care: Autum is 14 now.

Nadine Vogel: Oh okay, so that's always a interesting age whether they have special needs or not.

Autumn's Gift Respite Care: Absolutely absolutely and I think that you know of course you and norma know that once they hit that age is just like you know typical or neurotypical behaviors and then you see their their own personality and behaviors coming through so it's very interesting.

Nadine Vogel: You know, I've told everyone that you know teenagers and especially teenage girls, whether they have disabilities or not they definitely have special needs.

Autumn's Gift Respite Care: Yes, I agree, I agree.

Nadine Vogel: And we've all been there ourselves so we know.

NORMA STANLEY: Absolutely.

Nadine Vogel: norma you know had brought you to to our attention because of autum's gift and I believe you founded this it's a 501 C three i'm a metro Atlanta, can you tell us a little bit more about what autum's gift is.

Autumn's Gift Respite Care: So autum's gift is a tailored respite.

Autumn's Gift Respite Care: For families that have our loved ones with various disabilities and we've really focused on customizing our programs we were founded back in 2009 we had very gracious partners.

Autumn's Gift Respite Care: Who kind of just took us on, and let us kind of fell through things and i'm going to figure out how to develop the what what we feel is the best respite program definitely in the southeastern region.

Nadine Vogel: Okay, well, I, I know that respite is really, really important.

Nadine Vogel: You know and it's it's one of those things where parents, especially of younger children.

Nadine Vogel: They don't even know how to begin to take care of themselves because they're so focused on taking care of the kids.

Nadine Vogel: Right and then norma you know, for you as a single mom at this point, I mean even harder right so so let's talk about how we define respite you know what are those services How do people find out about it let's just start with what the services are.

Autumn's Gift Respite Care: yeah so fortunate, you know for myself, I am married, but the struggles are still the same you know with our families, it really doesn't matter, because what ends up happening is.

Autumn's Gift Respite Care: You know the load of caring for that child is really handled by you know more so, one of the parents versus the other so yeah so i'm sorry nadine what's your question again.

Nadine Vogel: Well, just let them talk about when we say respite what do we mean by that what kind of services that you're providing.

Autumn's Gift Respite Care: yeah so um our respite services are twofold so those services can be delivered.

Autumn's Gift Respite Care: Within individualized basis or in a group setting we prefer group settings because our idea or our philosophy of respite is not only the character giver having a break from their loved one, but also the love when I have enough having a break as well.

Autumn's Gift Respite Care: So with That being the case.

Autumn's Gift Respite Care: We really like to focus on those small group settings and those small ratio, so that we can do different things like hit them out into the Community.

Autumn's Gift Respite Care: and get them out on the Atlanta belt line and go for walks take them to museums um just different things, and within those small groups we run on a membership basis only.

Autumn's Gift Respite Care: So with That being the case, they're always with the same people, so what we've seen.

Autumn's Gift Respite Care: With our group is that it has given them an opportunity just kind of form, builds long lasting friendships and you know that usually people you know, naturally.

Autumn's Gift Respite Care: You know form those and they're just kind of out having fun within our Community, we need a little bit more assistance with doing that right, so what we found is that.

Autumn's Gift Respite Care: By specializing in our programs, making it a membership basis, only then we're able to really continue to focus on those small groups focus on having fun, while the caretaker is having a great as well as the loved one.

Nadine Vogel: So so Okay, so when we have the respite you know, the respite is it for like an hour is it for a day or a weekend How does that work.

Autumn's Gift Respite Care: yeah so our respite programs are four to seven hours long and that's for the groups, as well as for the individualized programs, um so, and really with our individualized programs it's tailored.

Autumn's Gift Respite Care: to fit the needs of the families so some families have our services on both Saturday and Sunday and some of them have them maybe a Wednesday.

Autumn's Gift Respite Care: So that's usually how our programs fall um now we do also offer a retreat to both our adults and our she's invited program, and so they went this past year to watercolor Florida for about five days um.

Autumn's Gift Respite Care: yeah so they absolutely love 30-A, of course, it was.

Autumn's Gift Respite Care: A group of approximately six, the ratio to staff, it was about four staff, plus myself and another, head of the program was there in the city, so that we can help out as needed so that's given them the opportunity to get away with friends.

Autumn's Gift Respite Care: enjoy you know, things like go to the beach go to the pool they went out to dinner to play just to do different things, and have those overnight well, while the parents go ahead and take a break during the same time.

NORMA STANLEY: love that love that.

NORMA STANLEY: You know, I was.

NORMA STANLEY: One of the things that I really wanted to one of the reason I wanted you to kind of be on the show was because that is such a challenging and and such an important thing when you're leaving a child, with.

NORMA STANLEY: Somebody who's caring for them and it's not you, you want to know that you're going to come back and find your child Okay, there was a story that just bothered me just last week about a young lady who has cerebral palsy who's was with a caregiver.

NORMA STANLEY: And who died.

NORMA STANLEY: In the car the caregiver left her there for five hours.

Nadine Vogel: Oh, my God.

NORMA STANLEY: And left, so I just wanted to kind of get an idea because I just think it happens, too often, for our children.

NORMA STANLEY: It happens with a lot Children these days I don't understand it, but particularly for you know vulnerable populations like children disabilities it's happening more and more, and I just want to understand.

NORMA STANLEY: What the screening processes of hiring people who is taking taking care of children who can I talk to themselves and who can't help themselves, she obviously couldn't unlock the car.

NORMA STANLEY: You know that's why she didn't take her with her, I don't know, but those are kind of things that really concerned me and I was wondering if you could shed some light on the screening processes.

NORMA STANLEY: To you know when you when you're making sure that your people who are taking care of our children are handled and cared for properly.

Autumn's Gift Respite Care: And qualify yeah.

NORMA STANLEY: Definitely qualified.

Autumn's Gift Respite Care: yeah so that's that's the lesson that we learned back in 2000.

Autumn's Gift Respite Care: And when we first started when we first started, of course, you know our mission was respite and we wanted to you know have volunteers and.

Autumn's Gift Respite Care: offer this extended date service to families, but we quickly found that that really didn't work because you know volunteers, they you know we're thankful for them, of course, our Community is but.

Autumn's Gift Respite Care: um they would come and go she's had and they weren't as committed as we would like, so what we did was.

Autumn's Gift Respite Care: We started a screening process so once a person is asked to interview with autum's gift the interviewing process to face.

Autumn's Gift Respite Care: So it's pretty rigorous each phase is about an hour and that's before we even meet them in person, and so we usually do two zoom.

Autumn's Gift Respite Care: Meetings with them one on myself than one with whomever will be their lead we meet them at our campus.

Autumn's Gift Respite Care: kind of just spend time with them and then we invited them to come back again so they could spend a day with our participants, so that we can just see.

Autumn's Gift Respite Care: How, you know just kind of what their flow is what their natural feel is for the community and I always to learn, please I can't teach you compassion.

Autumn's Gift Respite Care: But one great thing about our children is that they let you know right away, whether or not they're feeling a person or not, so why before they're even higher, you know they they do a couple of those screenings as well, so that we can just kind of get a feel for them.

Autumn's Gift Respite Care: In addition to that, once that phase is done we've been introduced them to.

Autumn's Gift Respite Care: It is for an individual client we introduce them to the family and allow the family to meet them and allow them to spend some time in their home um so our process is very.

Autumn's Gift Respite Care: Rigorous, our process is time consuming it's not just the kind of job that you can jump into, of course, we do the background checks and the drug screen and things of that sort, but we also take it a step further and we.

Autumn's Gift Respite Care: make sure that persons are going to be with us for a long period of time, so with That being the case, we have their pay even structured in a way that you have to give notice Okay, so you can't just.

Autumn's Gift Respite Care: fall in the company, you know work with the family, get a check and go um so we make it so that you know they have to give us up 45 day or we're pulling back our referrals.

Autumn's Gift Respite Care: Just kind of things of that sort, in addition to that, we believe in transparency for our families, so we do operate on an APP so when our staff members are our with our small groups or with our individuals.

Autumn's Gift Respite Care: Our parents are within that timeframe receiving live pictures live videos live feedback of what exactly is going on with their loved one exactly what activities they're they're engaging in because there's no better person than the parent.

Autumn's Gift Respite Care: That can tell whether or not their loved one is genuinely having fun and that's what our focus is fun so again, we want them to have fun and have a break, but we want our families to have a guilt free break too so with the with the.

Autumn's Gift Respite Care: The zoom meetings initially the interviewing process inperson and the shadowing the interviewing with the families and then that transparency.

Autumn's Gift Respite Care: That is mandatory throughout the day once they're employed with.

Autumn's Gift Respite Care: US is kind of you know it all goes into our game of helping to keep them safe.

Autumn's Gift Respite Care: On and I know it's a lot, you know and respite is very expensive I worked in the field extensively before autumn's gift so I get it.

Autumn's Gift Respite Care: And I get that one to one can be very expensive, but I think it has just helped that i'm a mom and I know exactly you know I feel I knew exactly what our community needs what our children need that was able to put together a program that was able to treat them all, like they're mine and.

Autumn's Gift Respite Care: You know, hold everyone accountable, who comes in.

Autumn's Gift Respite Care: Contact with them.

Nadine Vogel: that's great, so we are at a point we just have to take a short break.

Nadine Vogel: For our listeners stay tuned don't go anywhere we'll be back in just a minute with disabled lives matter.

Voiceover: And now it's time for a commercial break.

Voiceover: And now back to our show.

Nadine Vogel: Alright, everybody, this is nadine vogel and I am back with norma Stanley and together we are co hosting disabled lives matter.

Nadine Vogel: We are speaking today with Erica Hawkins who's talking with us about autumn's let me see what let me get the right name autum's gift, which is this just this fabulous service for respite and I can tell you norma you and i've talked about this right as special needs parents.

NORMA STANLEY: Yeah.

Nadine Vogel: Respite respite respite capital R if you don't have the family right and friends and folks that can help, this is the way to do it and Erica it sounds like you're doing an amazing job with this organization.

Autumn's Gift Respite Care: Thank you, thank you nadine.

Nadine Vogel: Just tell us a little bit about the disability types that you serve and the ages, that you serve.

Autumn's Gift Respite Care: Yeah, so the disability types that we service um pretty much vart and we feel like we're capable to and due to our screening processes were capable to take care of pretty much anyone who comes to us.

Autumn's Gift Respite Care: Um not so much medically fragile I think that's a different level of care that we're able to to give because we are a very active Program.

Autumn's Gift Respite Care: But, as for the ages you'll see on our website that our programs actually range from age three.

Autumn's Gift Respite Care: Throughout adulthood, and the three year olds that program is every moment counts it's about three to six what I found as a mom is that when autum was at that tender age, and we really need it.

Autumn's Gift Respite Care: Daycare programs for her inclusivity and it was not fair Okay, and so, for us it was like hey let's take her to the playground let's let's get a membership at the Y so while we're working out she can go into the kids room, because every single moment counted as.

Nadine Vogel: Early. intervention.

Autumn's Gift Respite Care: It is it is and we had to kind of you know find a way, so, aside from the every moment counts, we didn't go up into.

Autumn's Gift Respite Care: Our teams and adolescence um so we have our signature respite program and those programs and they're able to get out into the Community, we may have art therapist come in for the day music therapists.

Autumn's Gift Respite Care: And they do cooking they do sewing so much just a variety of different activities, and then we have the she's invited program which allows our girls.

Autumn's Gift Respite Care: um usually our girls are you know considered neuro diverse to come together and just help to bond and form those groups and things those little social groups that they will need.

Autumn's Gift Respite Care: And then we have our adults for our social experience and really with our adults.

Autumn's Gift Respite Care: They focus on the thing which is this expanding on those relationships that they have they do in Community activities Monday through Friday.

Autumn's Gift Respite Care: On they also have programs and things on Saturdays where they go to different outings like maybe to a braves game and um fine dining we're really like to let them kind of request and tailor their own programs.

Autumn's Gift Respite Care: or just provide us with a list of things that they want to do and share with each other so so yeah so autum's gifte has something for everyone.

Nadine Vogel: And I guess if someone does have medical needs, they could bring their own nurse or someone with them as part of the Program.

Autumn's Gift Respite Care: Absolutely, and you know what I had.

Autumn's Gift Respite Care: In that would be fantastic we're totally open to that and that's something that has helped to make us unique to is because we've even gone as far as is to have para professionals and things that come into our Program.

Autumn's Gift Respite Care: If a family really wanted to be there, so that they can train us how to work with that particular that particular child, so that we can you know just kind of streamline thing so yeah.

Nadine Vogel: So how about you, this is a $50 million question, I think, norma, you and I talked about this, we you know every interview right it is covid the dreaded covid right how has that impacted what you've been able to do.

Autumn's Gift Respite Care: yeah so covid.

Autumn's Gift Respite Care: yeah. the dreaded covid.

Autumn's Gift Respite Care: And what impact it has had you know for a while we had to stop our services, we were, and you know.

Autumn's Gift Respite Care: co-listing with different places and having our different programs set up as a different locations that we felt our participants could go into and.

Autumn's Gift Respite Care: meet their needs, environmentally but we had to stop that and that really and you know just kind of stifled our movement, a bit because we had to refigure things we had to just go back to the drawing board figure out.

Autumn's Gift Respite Care: How to make it work and so that's when we started doing a lot of different things in community, but we were blessed to meet Andrea Gordon.

Autumn's Gift Respite Care: Andrea Gordon is hosting an event called fashion meets food and, within that event, it will benefit autum's gift in our respite programs for families, so that.

Autumn's Gift Respite Care: The proceeds are going to go towards helping us to move into our own location so we're looking at doing that very soon, in October, so.

Autumn's Gift Respite Care: we're very thankful to Gordon and the chef for putting on this event for us and and it's going to be an annual event, and I know that it's going to be fun and will raise lots of money for respite i'm.

Nadine Vogel: Raising money for respite they know you said that you work on membership So who is it like sliding scale based on how people can afford to pay and then this becomes you know this fills the gap or How does that work.

Autumn's Gift Respite Care: yeah so the way that the money's work out is, we have one set fee, but all of the money raised.

Autumn's Gift Respite Care: All of the monies raised for autumns gift go right back into the scholarships so because that's where the greatest need, is because.

Autumn's Gift Respite Care: For us to provide the level of care that we do and a have Apps and creme de la creme Staff and things of that sort, we want to maintain those things, and that quality of care and so all of those things go back into the scholarship pod which fall back into our staff.

Nadine Vogel: got it. Well that makes a lot of sense.

Autumn's Gift Respite Care: So all of our families have. An opportunity to partake yeah.

Nadine Vogel: Well that was great Well, I can tell you, you know norma you and I, and we are probably the biggest believers in respite right.

Nadine Vogel: And in not only the kids meaning of but even more so for the parents so Erica I just want to thank you so much for all that you do for autum's gift I believe it's a gift that you're bringing to everyone.

Nadine Vogel: And so appreciative that you came on our show today.

Autumn's Gift Respite Care: Thank you all so much for having me and for allowing me to speak with your families about respite. yay.

Nadine Vogel: Absolutely so norma another great show.

NORMA STANLEY: Yes, it was yes, it was a lot of great information shared today, so thank you again.

NORMA STANLEY: Erica and looking forward to bringing lots more great guests to disabled matter as the week's pass and they're passing very quickly as i'm looking into the year Lord help.

Nadine Vogel: Alright, everyone will see you again soon bye bye.

Autumn's Gift Respite Care: Bye.

NORMA STANLEY: Everyone have a blessed one, bye bye.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Disabled Lives Matter Season 1, Episode 30 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Valerie Ghant

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley… yay!

Nadine Vogel: Hello everyone and welcome to today's episode of disabled lives matter I am nadine vogel your co host along with norma.

NORMA STANLEY: hi everybody great to be back.

Nadine Vogel: I know I know I missed you guys in the last few I covid got me down.

NORMA STANLEY: yeah but we're glad you're back yes.

Nadine Vogel: It will not keep me out that's for sure.

Nadine Vogel: So today norma we're joined by someone, I think that you know Valerie Ghant and Valerie is someone who came to this community by way of I believe Valerie and accident of your daughter is is that correct.

valerie ghant: Yes, ma'am yes ma'am my daughter, unfortunately, was in a hit and run accident.

valerie ghant: She sustained a traumatic brain injury behind it.

Nadine Vogel: Oh, my goodness, I am so sorry how old was she when this took place.

valerie ghant: She was only 19 sophomore in college at Columbus State University at the time.

Ah.

Nadine Vogel: So, so you know, obviously norma and I are special needs moms um but, but not in that way right, you know our kids were born with disabilities and I think that when it's the result of an accident, it just as a whole nother level of trauma.

Nadine Vogel: So norma don't you think.

NORMA STANLEY: Absolutely, I think that that's a whole nother level of trying to adjust to something that you're not used to we our children are born this way, so we.

NORMA STANLEY: You know, go into we go into it, but to have it happen suddenly I can't even imagine, so you said that your daughter was in college and had the accident or was hit by a car and then she was never the same from that tell us of your experience when it first happened.

valerie ghant: well.

valerie ghant: Really when it first happened just unbelievable because it was so you know abruptly.

valerie ghant: Like I mentioned, she was in school at Columbus state sophomore just had graduated that may before the accident and.

valerie ghant: When it first took place, I was just you know overwhelmed as any mom would be with you know emotion, it was a hit and run, so the person that actually hit her you know they you know they fled the scene.

valerie ghant: So it took months.

valerie ghant: Before we actually was able to track them down.

Nadine Vogel: Oh, you did track them down.

valerie ghant: Yes, the Marshal the federal agent the marshals they got involved, and they were able to apprehend him about probably about four months after the accident, but that was just kind of you know it's just a lot of things going on in it at that time so like I said very.

valerie ghant: emotional emotional a lot of trauma, as you say just a lot of trauma involved.

Nadine Vogel: So what so what kind of I mean, I assume, she had the accident went into the hospital was in the hospital for a long time, rehab.

valerie ghant: It happen, a fourth of July weekend so fourth of July and just you know very memorable for me in that way, and that was in July, and she was in the hospital until December we didn't get out.

valerie ghant: And it probably was about two years before things just slow down, because at the time the injury was so.

valerie ghant: catastrophic she had a trach and just all these other things that we're we're new and then she had.

valerie ghant: A shunt also placed so with that it'll be a lot of hospitalization after the accident and sometimes we're in the hospital and as disability moms you guys may know you go in the hospital sometimes that's 30-45 days easily first.

valerie ghant: You know.

valerie ghant: I stay away from that place.

valerie ghant: As much as.

Nadine Vogel: I know I spent I spent three months with my older daughter when she was born, I remember, but nothing, nothing compared to two years, so so on, so you said she had a traumatic brain injury, so I guess you had a bleed or something which is why they have to shunt.

valerie ghant: Yes, ma'am she had a diffused head injury at the time I wasn't aware, you know, I was so overwhelmed on what should have taken place, as far as you know, with this type of impact this type of injury.

valerie ghant: She should have been stabilized and sent to a place that specialize in brain injury.

valerie ghant: That can handle any you know offset or anything that may occur, and you know that didn't happen at that time, so in that place would have been sheltered for us because it happened down in Columbus Georgia, as I mentioned, she was a student at Columbus State University at the time.

Nadine Vogel: A grade so oh my gosh so many issues so.

Nadine Vogel: Well let's let's go back into talk about what the different kinds of injuries were, but I do want to come back to this issue of not being brought to the right location, I think that this is.

Nadine Vogel: A huge issue in so many ways, on so you said she had a trade to breathe, I guess you can read on our own.

valerie ghant: Well, actually.

valerie ghant: She could she will stabilize she could I was able to take the trach out.

valerie ghant: That was a fight with me with doctors, because what i'm learning in the medical industry, sometimes even you know say something like cancer right your diagnosis not really you know, an injury.

valerie ghant: is just a certain format or protocol that they are trained to use, you know and sometimes you can get caught up with those things, and that becomes a whole nother issue you know.

Nadine Vogel: I you know I have and I don't know where, but you have as well experience you know I had doctor the wanted to trach my older daughter, and I said you'll have to cut my throat to get.

Nadine Vogel: to hers, you know, so I remember those things, all too well and.

NORMA STANLEY: And I don't know why, they don't listen to the parents, I mean, I know that we have medical professionals, but we know our children, we know.

NORMA STANLEY: What they feeling with and, for some reason, these doctors don't really want to listen to what we have to say.

Nadine Vogel: You know that's why I started disability mama so many years ago right, it could, and you know Valerie you've seen it but our logo for disability mom is a hot pink boxing glove.

valerie ghant: Oh God.

Nadine Vogel: And it's like we're gonna fight today right to get what we need for our kids.

valerie ghant: yeah but it becomes so overwhelming and so just so i'm so glad you ladies, you know, created a platform to you know, to discuss issues of this magnitude, because this well need it, you know.

Nadine Vogel: So so let's talk about you ask them to send her to shepherd to the right location for traumatic brain injury and how did they respond.

valerie ghant: Oh, my God, so when it first happened right, you know i'm just overwhelmed i'm like what just happened right my mind is so caught up into that so I wasn't.

valerie ghant: You know I don't blame myself, but I just wasn't thinking clearly because all they were telling me was hey you know they were telling me she was gonna die that was just it she she's gonna die she's not.

valerie ghant: gonna make it and she's gonna die so and I had a praying Community boy I can you know I remember, just like it was yesterday all too well, but.

valerie ghant: It was probably about.

valerie ghant: Maybe 45-60 days and I started getting angry like you know what's going on here a liaison from shepherd Center was there, and she came down, and they have a program that's called.

valerie ghant: What is it disorderly.

valerie ghant: it's like for people that are in a minimal conscious state or just had an injury and they're like in a coma.

valerie ghant: I don't want to quote the name wrong but um I think disorders of consciousness, or something of that something like that, and I wanted her you know I asked them well can she get a bed, you know what you know, a charity bed or something can can we.

valerie ghant: You know shepherd and the only thing that the medical that they offer my daughter at 19 years of age right because she still has aged fighting for her, if nothing else.

valerie ghant: wants to take her to a nursing facility and, later on, as I met other moms on my you know for my brain injury family that's what I like to call it now, you know I learned the things that should have happened way after you know.

valerie ghant: Asia's accident, basically, how you know what should have necessarily took place and it's a lot of is some factors that I, you know know that you know, played a part in that you know I just I don't I don't know why, especially we're being so young.

valerie ghant: And it's.

valerie ghant: You know, different accidents it's people that have been ran over by cars and different things, and you know that's that's you know that's the norm stabilize them and get them to a place that specialize in that type of injury and normally that's brain injury or spinal cord injury.

Nadine Vogel: Right well, so we need to take a really short break when we come back, I want to explore that further or explore what those factors were.

Nadine Vogel: You know why why, why do you think you know they didn't do what they needed to do, and I suspect, I have some ideas, but I want to hear from you so let's go on a very quick break.

Nadine Vogel: And, ladies and gentlemen, don't leave us, we will be back with Valerie Ghant and hearing about this unfortunate story about her daughter.

Voiceover: And now it's time for a commercial break.

Voiceover: And now back to our show.

Nadine Vogel: Hello everyone, this is medium vogel want to welcome you back to today's episode of disabled lives matter I am with my fabulous co host normal Stanley norma stanley, say hey.

NORMA STANLEY: Hi guys.

NORMA STANLEY: We're having a conversation here.

Nadine Vogel: yeah Valerie Thank you so much for for your willingness to share such a personal story and and what has happened now five years into it with your daughter's car accident.

Nadine Vogel: Before we before we took a break, one of the things we ended on was, you know that that it sounds like your daughter didn't really get.

Nadine Vogel: That necessarily the right care of that she needed right off the BAT although you were asking for it.

Nadine Vogel: And i'm just wondering if if you have some thoughts as to what those barriers were or factors to do with why she didn't get to a head injury expert, you know why she didn't get moved any thoughts on that.

valerie ghant: Well, in health care alone and it's just it's.

valerie ghant: it's Sad to say.

valerie ghant: But economical status plays a big role and race is a factor as well.

valerie ghant: You know at at not using the race car but i'm living it i've lived it, so I have to bear witness to that you know those were definitely factors that were involved, my daughter actually the insurance that January Asia turned 19 and the insurance that I had.

valerie ghant: dropped her because, when we were first their I guess the insurance Maybe it was showing up in the system.

valerie ghant: And I even had the neurosurgeon going from telling me her father that he could do xyz to he can't do anything.

valerie ghant: And I mean we you know we went back and forth and i'm like you just told us, you know you could you know perform this or take these type of measures, and now you know all of that just kind of changed in in later on in thought i'm just saying I guess that had to play a role in it.

valerie ghant: But they figured out that the insurance that we had it wasn't good they had dropped her.

Nadine Vogel: Oh, my gosh. Oh, my gosh.

Nadine Vogel: I you know I have this ongoing issue norma you and I have talked about it, we talked about here at springboard just you know we've got to change healthcare.

Nadine Vogel: In this country absolutely I mean disability or not, we have just got to change health care, I have, I have just never seen some of the things that go on, and then I.

Nadine Vogel: I do agree Valerie you know, then we add raised or we add socio economic status and it just I sometimes I wonder what country were in.

Nadine Vogel: yeah right norma I mean.

NORMA STANLEY: Absolutely.

Nadine Vogel: On a regular basis and it's just i'm in all I know, and I don't think it's getting better I think it's getting worse.

NORMA STANLEY: it is absolutely getting worse, it absolutely is getting worse.

NORMA STANLEY: Um hm.. go ahead.

valerie ghant: yeah one of the bigger barriers is cost, just like you know with my daughter, she has a head injury and.

valerie ghant: A lot of therapy, that is offered that can help you know technology Advanced therapy, they do not deal with the insurance at all, because I guess it's such a headache they're not going to approve it.

valerie ghant: I had a personal experience, and it really doesn't matter, even if it's private insurance, we have had blue cross Blue Shield and it was a doctor, I took my daughter, and we went around I went everywhere, but.

valerie ghant: it's important immediately after a big injury, you know, spinal cord brain injury things like that that a lot of the things you take certain measures to kind of preserve certain things.

valerie ghant: from happening that tend to happen so that's why it's very important to get to a specialized facility.

valerie ghant: And so later on down the road.

valerie ghant: You know, once I realized certain things I still went on a rant as a mom and you guys, you know you'll know I drove all to Houston I you know I drove different places.

valerie ghant: But it's very hard, once you get a doctor working on a person and things don't take place to get some kind of recourse because that's a big big protected territory if you know what I mean.

NORMA STANLEY: Just like the police.

valerie ghant: yeah, and so we you know we went to we went to Houston and there was a doctor there she even she was trying to get Asia, maybe then it was probably.

valerie ghant: About two years after the accident.

valerie ghant: And she was trying to get her into TIRR Harmon Memorial it's down in Houston Texas it's probably known as one of the second or third best rehabs and she was trying to get her in there kind of late.

valerie ghant: But blue cross and Blue Shield you know you have to have something like you, meaning, you have to get admitted or something after a big injury to even try to.

valerie ghant: seek some help if that makes sense because that's how these log and different things are set up, so we had a shunt revision there and.

valerie ghant: i'm not sure if you know much about it but that's the procedure we had, and she was trying to you know fight to get Asia in there.

valerie ghant: And she was just even having the conversation how you know i'm not just saying this is facts behind it, a lot of African American or minority when something happens, they are not offer, they are not, they do not receive the proper rehab for some reason.

valerie ghant: So I just want you know, this is not an opinionated thing you know what I mean.

valerie ghant: They don't and My other point is, we had a private insurance, along with medi medicare.

valerie ghant: I think i'm saying that right not medicaid because you have to get that one, two years after the injury, but we at least have both of those and my point is with the private insurance, they were fighting worse.

valerie ghant: They would not approve her to go to rehab I mean it just went back I filed an appeal and she couldn't keep holding us because you know it's about it's a monetary thing.

valerie ghant: In the hospital to get to the rehab because the insurance will not approve it, you know, so it was just.

Norma Stanley: Wow.

valerie ghant: It was just horrible.

Nadine Vogel: You know, when insurance companies say they don't make medical decisions, but when they do things like that they are making medical decisions they are altering the course of our kids lives or our lives or whoever, you know is is involved and it's just something that.

Nadine Vogel: Ugh.. it's you know you put the knife in and then you turn it so tell me tell me value, today, you know how has this changed your lives how's things going today.

valerie ghant: um well.

valerie ghant: Even at this point i'm trying to understand and adapt to the new norm.

valerie ghant: Hopefully, I mean and I guess, I asked myself some days, what is the new norm.

valerie ghant: You know, we just have a different way of life at this point i'm trying to modify my house at home, where it's A-D-A accessible.

valerie ghant: And you know that's a fight another barrier or a loophole i'm trying to jump through We live in a plan Development Community, and we have an Hoa and I find myself fighting to do that, and my daughter has a disability it's it's insane.

valerie ghant: crazy yeah.

NORMA STANLEY: yeah and your daughter is in need now. of a standing wheelchair that's something that you can help look at this point, and you need some assistance and getting that because that's a very expensive proposition tell us about what you're trying to get done

valerie ghant: Yes, ma'am i'm trying to get Asia and I go back in my mind and say miss miss norma why wouldn't they offer a 19 year old back then, and you know wheelchair that can stand up, because at that point, you know it's a fresh injury, it could offset some of the things that are.

valerie ghant: happening, when a person is not moving physically.

valerie ghant: Like we are day to day.

valerie ghant: But you know they didn't so now i'm trying to get this standing wheelchair, the cost of the wheelchair is about $40,000.

valerie ghant: After fighting for Oh, I think we went to a seating clinic at shepherd back in November of last year it's almost November again.

valerie ghant: They finally approved it, most of it, but they left a $10,000 balance saying I guess it's not mandatory, that she stands up, even though it will offset other things that take place with by you not standing or being physical.

valerie ghant: You know, physically moving around because you're going to deteriorate, eventually, and I don't know if that's what you know I hate to say it, that they you know, not just for Asia, but with people in this population so yeah it's a.

NORMA STANLEY: So you

NORMA STANLEY: you have a gofundme you're trying to create tell us about that

valerie ghant: I was trying to create a gofundme and efforts for Asia to get some rehabilitation, because I feel that she hasn't.

valerie ghant: She hasn't had a fair fight I don't feel like she's at her baseline when she returned to that bright 19 year old i'm trusting and believing God I choose to you know not to believe anything but that but besides that if she if she doesn't This could help her so much preserve.

valerie ghant: preserve her health, because if you're not active and moving around.

valerie ghant: you're going to deteriorate, eventually, you know that things are going to start to happen, but this wheelchair is good because it can stand her up like a standard up throughout the day, even if it's only for 10 or 15 minutes every two hours so.

valerie ghant: It helps in that way with her overall well being.

Nadine Vogel: yeah absolutely I you know I never understood this, you know it's not like you said there's known medical issues if someone you know, is in bed all the time we're in a wheelchair.

Nadine Vogel: And so, if we can eliminate some of those you know it's like pay me now or pay me later because if they don't pay for the wheelchair now they don't pay what's needed then there's going to have to cover other.

Nadine Vogel: expenses later like I I never understood that but.

valerie ghant: yeah you know with that it could mean.

valerie ghant: Less E-R visit us, you know what.

valerie ghant: i'm saying big medical stays because you know if you're not moving around you have situations with your.

valerie ghant: With your lungs and you know multiple atrophy is a big thing and it, you know it hurts and cause of the problem, so so i'm like what's really going on here that's why I have to say, are you, you know, hoping for the you know ultimate for this population what what is what is going on.

Nadine Vogel: Right, right.

Nadine Vogel: And, and what I would also say is in terms of your home and the Association on go go on to online and take a look for the state of Georgia, the Department of housing.

Nadine Vogel: It will cover things for private housing as well, relative to disability.

valerie ghant: Okay, thank you, I have looked at the fair housing and unfortunately I think i'm going to have to get them involved, just to make my home A-D-A accessible, I mean it's crazy it sounds crazy, but it is crazy.

Nadine Vogel: yeah. When you have an association.

Nadine Vogel: It takes on a whole new because the associations can decide really what they want to do, but they can't overrule A-D-A, so I would contact them and have them help you, they should be able to do that.

valerie ghant: Thank you so much for sharing.

Nadine Vogel: yeah absolutely I just.

Nadine Vogel: Oh, my goodness norma.

NORMA STANLEY: Well, I just want to turn to be able to share with the listeners um you know if they choose to.

NORMA STANLEY: If they have resources that can be of assistance will be they can go to get information about you know what you're trying to do to help your daughter.

Nadine Vogel: And I also want to you know folks to hear that these barriers that you've encountered are real, you know.

NORMA STANLEY: There's a lot of people.

Nadine Vogel: These are not stories you hear about you know you're a real person your daughter is a real person you're experiencing this in a real town in a real hospital.

Nadine Vogel: Like We need people to understand this, that this is not made up this is what's going on you're just one person think about how many times a day, every day, this is happening.

Nadine Vogel: in hospitals in rehabs and with insurance all across the country so so I just want to thank you so much Valerie for being willing to share your story.

Nadine Vogel: And you know from the bottom of my heart and norma, we wish you all the best and your daughter, and to be able to recover in as much as and whatever capacity, she has the ability to.

valerie ghant: Thank you.

NORMA STANLEY: share the information with.

NORMA STANLEY: Share the information about it or give them where they eed to go to hel if they can.

valerie ghant: Well, I actually created a gofundme for Asia i'll leave my contact number also you can find that link on my Facebook page and that's Valerie Ghant and Asia's Facebook page is Asia Almez, that's A-S-A-I A-L-M-E-Z.

valerie ghant: And my contact number is 706-332-1666 again it's 706-332-1666 it's a gofundme link that has been created we're trying to purchase this wheelchair.

valerie ghant: it's from new motion and her name is Asia Hoskins even if someone if they can't contact me i'm you know direct you know contact, however i'm just trying to be a voice for my daughter, right now, because she can't you know, be a voice for herself and try to get her.

valerie ghant: back to the best capacity as she stated as possible because, again I know she's not her bass line this young lady has so much fight in her.

valerie ghant: And I just don't want to sit around and watch her deteriorate, because the cost again that is affiliated with some of these things is just.

valerie ghant: astronomical for any you know even for a middle class family, the cost is just you know you would be bankrupt out of your home truck trying to seek you know seek help.

Nadine Vogel: yep absolutely well Valerie Thank you Thank you so much, once again, for joining us we're going to wish you all the best.

Nadine Vogel: This is nadine vogel and norma stanley signing off from another episode of disabled lives matter remember we're more than a podcast we are a movement, and we hope you will join that movement see you next time bye bye everybody.

NORMA STANLEY: bye bye. Be blessed.

valerie ghant: Thank you.

Nadine Vogel: Thank you.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Disabled Lives Matter Season 1, Episode 29 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Diego Mariscal

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley… yay!

Nadine Vogel: Hello everyone and welcome to today's episode of disabled lives matter, this is not just a podcast, this is a movement, and I am just delighted to be joined by Diego Mariscal today for this movement Diego welcome.

Diego Mariscal: Thank you, thank you for having me really excited to be here.

Nadine Vogel: Absolutely Now I know I know Diego that you, you know you meet people often use a i'm disabled and i'm proud.

Diego Mariscal: yes

Nadine Vogel: A little bit about your background, please.

Diego Mariscal: yeah sure sure, so I was actually born in the United States by accident.

Diego Mariscal: My parents were both Mexicans were shopping and I was born six months and a half into my mom's pregnancy so.

Nadine Vogel: Oh, my gosh.

Diego Mariscal: yep pretty tiny baby my mom jokes and said that i've always been really stubborn even before I was born, I wanted to get out quickly.

Diego Mariscal: So um and so as a result of that I have CP Cerebral Palsy and, for me it manifest in trouble walking.

Diego Mariscal: A little bit of difficulty with reading and writing and.

Diego Mariscal: little bit of difficulty although you wouldn't know it on my hands and sort of dexterity overall, but primarily my legs um and you know growing up.

Diego Mariscal: With a disability in Mexico was definitely an interesting experience from an early age, I realized that I was perceived differently, I remember asking a kid if he wanted to play with me and he said that his dad didn't let him play with weird kids.

Nadine Vogel: Oh, my gosh.

Diego Mariscal: I know. So.

Diego Mariscal: But at the same time, I was lucky enough to to you know be born in a family of supportive parents my brother who's actually 10 months and a half younger than I am so my my parents didn't waste any time.

Diego Mariscal: He doesn't have a disability, and so, because we're so close in age in fact people call us Irish twins.

Diego Mariscal: So, because he doesn't have a disability and I think my parents, especially my mom did a really good job of.

Diego Mariscal: Setting the same level of expectations for me, as she did, as they did for my brother so.

Nadine Vogel: Yay mom.

Diego Mariscal: Right right.

Diego Mariscal: So, so if he has to make is bdd, I had to make my bed too you know clean up the table, all that stuff and so obviously with accommodations and modifications right, I would only carry like plastic cups. and plastic plates.

Diego Mariscal: What it did said it did set a parameter for me of of you know, high expectations and really being able to do whatever it is that my brother, and I wanted to do and so from there, I.

Diego Mariscal: I was a and i'm happy to go into any.

Nadine Vogel: direction you.

Diego Mariscal: want me to go, but I was a paralympian for a while then I started my first company in high school and then now I work on supporting other entrepreneurs with disabilities so.

Nadine Vogel: So, so I do let's let's go back to age 18 because I believe that age 18 you while still in high school you actually started is limitless prepatec

Nadine Vogel: yeah talk to us about that.

Diego Mariscal: yeah so you know that was interesting, so I was one of the few disabled people in my high school at least outspokenly. You know.

Diego Mariscal: um and I felt like I wanted my peers, to understand what I was going through right um and so as a way to explain to other people I don't honestly as a way to make friends, I was like.

Diego Mariscal: What if we created a club that was all about teaching students about disabilities, so we would do things like eating without being able to see or using public transportation while in a wheelchair.

Diego Mariscal: love it, love it.

Diego Mariscal: and in 4 years, we were in 15 high schools across the country 80% of it was corporate funded um and it continues to be one of the largest youth led movements.

Diego Mariscal: About disability in Mexico, that in hindsight, you know, there are some things that I think we could could improved but I learned a lot, I was 19 at the time. so really really proud.

Nadine Vogel: Well, you know what's new what's fascinating about that though is that um so when my older daughter.

Nadine Vogel: And she has disabilities and when she was very young and in school, she was fed through a gastrostomy tube and had other issues and people would make fun of her the kids.

Nadine Vogel: And I would come into the classroom and we would sit in a circle, and we would kind of educate the kids.

Nadine Vogel: So that they would they wouldn't fear what they saw right and it would be more comfortable and engage her as a friend and so forth, so.

Nadine Vogel: You know it's interesting to hear what you did i'm like oh my gosh we could have started a whole movement across the country look what you did and and and I was this you know smart educated parent and I couldn't have thought of that, and you would 18 had this whole idea and oh. My gosh so.

Nadine Vogel: kudos to you, and you know it's interesting and you know I personally and I don't know how we should talk about how you do this but.

Nadine Vogel: I personally feel, how do you do we should take that program somehow right and how do you replicate it in other countries, because.

Nadine Vogel: You know i'm a firm believer that if we educate children.

Nadine Vogel: On on disability etiquette and things like that they won't become what I like to refer to as the stupid adults.

Nadine Vogel: Right and then we wouldn't have half the issues, I think that we have sometimes in corporate and to society in general, so I think that that's so powerful and especially like you said you know it's been corporate funded have you thought about bringing that to other countries.

Diego Mariscal: So that was actually so it's funny you say that. Because.

Diego Mariscal: You know how to get this Together International so it's actually international because the original name of the of the of the movement in Mexico was together.

Diego Mariscal: And so, when I came to the states we we put together international because the idea was to bring it here that was that was idea.

Diego Mariscal: Okay um but what I learned, when I was trying to do that is a couple of things culturally there's a more vibrant.

Diego Mariscal: Disability Community here, and then the movement I think it's a little bit farther along and so some people in the disability Community looked at that as.

Diego Mariscal: kind of blackface.

Diego Mariscal: So a you know just because you're in a wheelchair for a day doesn't mean you fully understand what it's like to to hop to be in a wheelchair, you know.

Diego Mariscal: So that was one side of things, but then the other side is that, and this is where I think you know things could have been better, but the other side was.

Diego Mariscal: We were educating non disabled people, and so it was a bunch of.

Diego Mariscal: And the majority of people in colleges and high schools, and you know.

Diego Mariscal: For a variety of systematic reasons tend to be not disable, and so it was not disabled people educating other non disabled people. About.

Nadine Vogel: Yeah that's not right that's what we want to do, but if we could have.

Nadine Vogel: People with disabilities, children.

Diego Mariscal: Yes, it is.

Nadine Vogel: And if it's younger children, then, accompanied by their parents.

Nadine Vogel: yeah just educating young children.

Diego Mariscal: Yes.

Nadine Vogel: right.

Nadine Vogel: Because I you know this doesn't need to be about the adults, this is about the the the elementary school middle school.

Diego Mariscal: yeah.

Nadine Vogel: Oh, my gosh well just know if you ever decide, you want to go back and do that I you got to support it here I think it's so important.

Diego Mariscal: We should we should talk about that because that'll be great.

Nadine Vogel: And i'm sure i'm sure my older daughter Gretchen who you probably talked with to get this.

Nadine Vogel: scheduled she works for our company we'd love to talk with you about how to do that.

Nadine Vogel: So yeah I should I should hook, the two of us to connect on that because that's.

Diego Mariscal: Just yeah.

Nadine Vogel: Yes, so so important, I will do that actually um so let's move forward so in.

Nadine Vogel: 2015 you founded Together International right now that's focused on supporting entrepreneurs with disabilities right.

Diego Mariscal: Yes, yes.

Nadine Vogel: So how are you supporting them what are you doing for them.

Diego Mariscal: yeah great question, so we are an accelerator by and for founders with disabilities, and so we look at.

Diego Mariscal: Really accelerating businesses, led by or startups led by people with disabilities and really the whole premises as disabled people, we have to solve problems every day.

Diego Mariscal: From the moment we wake up, we have to figure out how do we get dressed how we drive how we communicate and so those are problem solving skills.

Diego Mariscal: That if given the right resources, support and guidance can turn into thriving businesses um so it's all about a.

Diego Mariscal: Using that innate ability that or innate characteristics that disabled people have.

Diego Mariscal: to advance their businesses forward.

Nadine Vogel: got it got it and I think the same goes true for people with disabilities, not even in their own businesses but working in other businesses.

Nadine Vogel: And I you know i've heard you say disability is an asset for performance, I could not agree more, but i'd love for folks to hear when you say that what do you mean.

Diego Mariscal: yeah so the best example is you know there's this there's this common saying right doesn't matter how many times you fall it matters, how many times you get up.

Diego Mariscal: Well i've literally fallen thousands of times in my life.

Diego Mariscal: No exaggeration, literally falling thousands of times in my life and i've gotten back up thousands of times in my life right and.

Diego Mariscal: that's an example of just the resilience that that takes not in a hypothetical or metaphorical way it, you know, in a very real way very tangible way and so translating that in the business context, I mean talk about resilience right and the importance of of.

Diego Mariscal: harnessing that and that's just one aspect also um creativity right.

Diego Mariscal: You have to figure out how am I going to one of the things I have to think about is how am I going to get dressed in the morning how am I going to put my shoes on and.

Diego Mariscal: Little things like that you know force you to be creative in a way that you can translate that into a corporation, and then organization um

Diego Mariscal: I think.

Diego Mariscal: The step beyond that is for companies and organizations to create an atmosphere where that's allowed because sometimes there's a lot of internalize ableism that.

Diego Mariscal: folks with disabilities don't want to disclose their disability or don't want to show.

Diego Mariscal: that they have a disability, because of the internalized stigma um so so it's about creating the right atmosphere, to let those skills flourish.

Nadine Vogel: Right right no it's it absolutely it's about Problem Solving it's I mean, I agree, I always say you know i've seen my daughter do things in a way that i'll look and be like why on earth would you do it that way, but then you try it yourself and you realize that's more effective.

Nadine Vogel: Right or it's quicker or something it's more efficient and I, you know I clients of ours, you know as they've hired individuals with disabilities.

Nadine Vogel: And they start getting comfortable and they see and realize the benefits, then it's like Oh, we should of you know, we should have been doing this, a long time ago right it's so it's It is interesting, but people fear what they don't know.

Nadine Vogel: And what they haven't experienced and that's what that's what takes me back actually to why i'm so excited about what you've done with educating children.

Nadine Vogel: Because if we educate them at that age and they grow up not fearing disability and they grow up understanding that everyone is alike, then.

Nadine Vogel: Then it changes right by the time they get to college, by the time they get to the workplace it completely changes and that's that's what we need.

Nadine Vogel: We have a saying at springboard where we say to mainstream people with disabilities right it's not about treating everyone the same but giving everyone the same opportunity, yes.

Nadine Vogel: And that's really important, so it is time for us to take a short break, so we will do that for our listeners, please don't go anywhere we'll be right back with Diego and just hearing about his amazing story be right back everybody.

Voiceover: And now it's time for a commercial break.

Voiceover: And now back to our show.

Nadine Vogel: Hello everyone and welcome back to disabled lives matter more than just a podcast, it is a movement and Diego we are having this amazing conversation about all these just incredible things that you have.

Nadine Vogel: achieved and are continuing to achieve not just to benefit yourself but benefit the world of disability, which is really important, because, as we say disabled lives matter, and they do.

Nadine Vogel: And you know hearing hearing about what you've done what you've accomplished, and what I think is coming down the path.

Nadine Vogel: Just proves that point so to that end, I believe you have some kind of tech cohort that's coming up, I actually think you're partnering with Google or something so, can you share with us a little bit about.

Diego Mariscal: Yes, yes, so I just have to say, this is not a partnership, it is with support from Google to start.

Nadine Vogel: Okay okay.

Diego Mariscal: clarify that um but yeah no we're super lucky to have Google for startups involved in this this tech cohort um, and the reason we have to clarify that partnership pieces, because they have a partnership Program.

Diego Mariscal: That you have to respect that.

Diego Mariscal: They're whole streamline it is.

Nadine Vogel: what is this exactly then.

Diego Mariscal: so this is basically they this tech cohort and i'll get into what that is but this tech cohort it is possible.

Nadine Vogel: okay

Diego Mariscal: With the support of Google for startups um and we're actually working with them to essentially become part of their partner program, which means that our entrepreneurs will have access to programming their ecosystem all that stuff but there's a rigorous application.

Diego Mariscal: process and all that so.

Diego Mariscal: we're working we're working on making that happen.

Nadine Vogel: Okay

Diego Mariscal: um. But anyway, so the our core programming right now is our accelerator program which is basically three months.

Diego Mariscal: folks get coaching they get access to classes, they get peer to peer support network they get funding, so we tried to really do kind of comprehensive accelerator program for founders with disabilities and to that end we.

Diego Mariscal: We tend to do theme related cohorts so we had a women's cohort and we also had a DC full cohort and now we're doing this tech cohort with support from Google for startups.

Diego Mariscal: And.

Nadine Vogel: And you always have a company supporting in some way.

Diego Mariscal: Well we're moving towards that hopefully.

Nadine Vogel: Okay.

Diego Mariscal: We didn't we didn't I mean we started working with our first cohort was supported by DC government our second cohort was supported by a foundation, but we want to, we want to make sure we're involving corporations.

Diego Mariscal: As as we continue to grow so.

Diego Mariscal: what's great about working with Google for startups is that.

Diego Mariscal: Their.

Diego Mariscal: um team is involved right, so the the entrepreneurs will have access to.

Diego Mariscal: The some you know, a product mentors ah technology cloud credits, you know and really the exposure that comes with being associated with Google for startups and so that's also an added value that we can bring to the table.

Nadine Vogel: And and and when when when you have folks in this cohort approximately how many folks again, do you have.

Diego Mariscal: So we accept anywhere from 12 to 15 but so far we've gotten about 200 requests per application.

Nadine Vogel: So oh my gosh.

Diego Mariscal: yeah it's gonna be a tough time.

Nadine Vogel: what's the evaluation.

Nadine Vogel: process like who makes that decision.

Diego Mariscal: yeah great great question so um so we have.

Diego Mariscal: You know, a standard application that our Board, which is made up of entrepreneurs and people with disabilities have.

Diego Mariscal: put together, as well as looking at accelerator best practices so there's the first filter is the application process then we do a second round, which is the round of interviews with the 30 finalists then we select 15.

Nadine Vogel: wow and how long does the program last.

Diego Mariscal: it's a 12 weeks so it's.

Nadine Vogel: yeah and what is the goal at the end of that 12 week.

Diego Mariscal: So the goal is really to advance your business forward.

Diego Mariscal: At a significant to accelerate your business hence accelerator. hey.

Diego Mariscal: To really advance their their business forward, I mean we had we recently did a women's cohort and, you know when you look at.

Diego Mariscal: The the 12 women that presented, you know from their application to the three months it's night and day it's like they're ready mean they can confidently go in to an investor meeting.

Diego Mariscal: Where they can.

Diego Mariscal: confidently you know present to a partner, it really it's really great, and I think part of it is also a huge value that we see is one the coaching component is huge, but the other is being surrounded by 12, 12 to 15 like minded people for three months.

Diego Mariscal: Right and that's a huge deal.

Diego Mariscal: Because entrepreneurship can be lonely right surrounded with people that you can relate to.

Nadine Vogel: And let me, let me jump on that about the loneliness.

Nadine Vogel: Because obviously you're doing this during Covid.

Nadine Vogel: So i'm assuming right now it's virtual has it always been virtual.

Diego Mariscal: know the first the first accelerator we didn't person and we actually were adamant about maybe doing it in person to allow people to really connect and engage.

Diego Mariscal: Covid it for us really I would say, was a blessing, though.

Diego Mariscal: Because we were able to serve more people, and we were also able to make the program more accessible in terms of accommodations that.

Diego Mariscal: So we actually.

Diego Mariscal: will probably do one or two accelerators in person, but they'll be most likely they'll be people that have already gone through our Program.

Diego Mariscal: And we might invite them to come in person and.

Nadine Vogel: Maybe like an alumni.

Diego Mariscal: Yeah.

Nadine Vogel: so i'm pleased you for our listeners if someone is listening and says oh my gosh I want to add to this 200 applications and make it 201 how do they do that and they apply or get in.

Diego Mariscal: touch, yes, so the application is is on our website, right now, I believe, when this episode ends, it will be closed we're closing on a Monday.

Diego Mariscal: Okay, but.

Diego Mariscal: Hopefully i'll send you all the information and, hopefully, you can share it on the listserv put it on social media.

Nadine Vogel: Yeah.

Diego Mariscal: um because we would love to have Members from your Community be a part of this.

Nadine Vogel: Can you just tell everyone with the website is at least.

Diego Mariscal: Yes, yes it's together dash international dot org now but kicker is that together is with a 2.

Nadine Vogel: Number two and then G-E-T-H-E-R dash international www.2gether-international.org.

Diego Mariscal: That are yeah.

Nadine Vogel: Okay excellent so we don't have much time left, but in in in the time we do have, I have two questions one, what do you see the future is for the organization.

Nadine Vogel: And then I just want to end with just some of these amazing awards and things that you've won, but what do you, what do you see the future.

Diego Mariscal: So, really, I mean I started this because I wanted to redefine the way people thought about disabilities and the way people perceive disabilities, so my goal really is that people see disability as.

Diego Mariscal: An asset to business as value to diversity, and so we just happen to be doing it through entrepreneurship, right now, but that may evolve, or you know we may add things down the pipeline it really having someone who.

Diego Mariscal: Richard Branson or the the the entrepreneurs on Shark Tank they all have this ability, but they're not necessarily until recently, they weren't necessarily very outspoken about that.

Nadine Vogel: way.

Diego Mariscal: To me, and what to support the next you know, to find the next billionaire.

Diego Mariscal: Who has a disability, and say that yeah it's not in spite of my disability as exceeded it is.

Nadine Vogel: Because of my disability.

Diego Mariscal: The strength that that.

Nadine Vogel: Absolutely.

Diego Mariscal: that's the future, I see.

Nadine Vogel: In closing, I want to close on this whole interview has been a high for me that I want to close that even a bigger high you have.

Nadine Vogel: My gosh.

Nadine Vogel: You have won so many awards.

Nadine Vogel: you've participated in the global entrepreneurs summit.

Nadine Vogel: you have won awards from the International Council on disabilities, you were the first United Nations World humanitarian so with all of these things just tell us what.

Nadine Vogel: What do they mean to you individually and then, what do you what do they mean, do you believe to just people with disabilities at large, or the impact to the Community

Diego Mariscal: yeah. well.

Diego Mariscal: I mean individually to me, maybe sound counterintuitive but to me individually, they don't really much because it really it's a reflection of.

Diego Mariscal: A lot of people that have been supporting me along the way, and they're not really a recognition of my accomplishments alone their recognition of the people and the team behind me from my parents to other disability advocates who have mentored me and supported me, and so I think that.

Diego Mariscal: to tie it back to the other point which is what they mean for disability community at large, I think I hope that they serve as a reminder that.

Diego Mariscal: really effective transformative change comes from Community and being really.

Diego Mariscal: intentional about that and so um I hope that whoever is is reading or listening to this recognizes that there's a whole.

Diego Mariscal: village behind those those awards, and so the more that you can surround yourself with people that are going to push you but also believe in you, I think, the better the whole movement is going to be.

Nadine Vogel: could not agree more what a what a great way to close out this interview Diego Thank you so so much, I am just loving hearing about everything that you've done.

Nadine Vogel: And everything you're doing and just you know excited to see what the future brings.

Nadine Vogel: I guarantee this is not the last time you're going to hear from me or from springboard I suspect it might be some other opportunities we can connect on but.

Nadine Vogel: For this issue of or this this issue of disabled lives matter, I just want to thank you very much, and I know our listeners are going to very much enjoy enjoy this podcast so thank you.

Diego Mariscal: amazing, thank you for having me, really, really appreciate it.

Nadine Vogel: Absolutely bye bye everybody.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Disabled Lives Matter Season 1, Episode 28 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Khafre Jay

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley… yay!

NORMA STANLEY: Greetings everyone I am norma stanley and you're listening to disabled lives matter and my co host nadine vogel couldn't be here today, but we are so excited to be speaking with Mr Khafre Jay, am I pronouncing your name right. Khafre.

Khafre Jay: My dad put the strong E on the end of it.

NORMA STANLEY: Oh, okay.

Khafre Jay: It's K-A-U-F-R-E-E, like coffee.

NORMA STANLEY: Okay, like coffee but K-A-U-F-R-E-E. Okay.

Khafre Jay: Yeah, yeah.

NORMA STANLEY: I'm bad at pronounciations, but.

NORMA STANLEY: You know he is the executive director and founder of hip hop for change and um he you know, has an amazing organization and.

NORMA STANLEY: Actually, as an initiative dealing with mental health and we want to have a discussion with him about mental health in the black community because what disabled lives matters is all about is.

NORMA STANLEY: You know the intersectionality of black lives matter and people with disabilities, they matter to, and we want to make sure that people.

NORMA STANLEY: understand.

NORMA STANLEY: The viability and the opportunity and the significance of both these communities and how they intersect in many ways and one of those ways is mental health and how we are treated.

NORMA STANLEY: People with disabilities and black people in general.

NORMA STANLEY: Have health issues or mental health issues that.

NORMA STANLEY: they're not recognizing or.

NORMA STANLEY: You know when they do recognize it it's past the point when they should have done something so we want to talk about today with you and i'm so excited to meet you.

NORMA STANLEY: And to learn about what you've been doing them i'm very impressed with your work, I did a little research and check out a couple of videos and like I said, if I love the tedx talk and your talk on food justice cause that is a real situation, you can.

NORMA STANLEY: And you know Robin Hood tax, I mean we can have a little conversation about all of that.

Khafre Jay: yeah.

NORMA STANLEY: You know let's talk about mental health and the black Community because that's a real situation.

NORMA STANLEY: um you stated some facts, and some of these facts I already know, but you know, but I want you to if you have any I can I can put some out here, and you can send it to you, I mean you know have you talk about it but 20% of African Americans are more likely to experience mental health issues.

Khafre Jay: yeah.

NORMA STANLEY: Go ahead.

Khafre Jay: No, no, go ahead go ahead I didn't mean to lean in.

NORMA STANLEY: Basically and that's true, and one of the things that you mentioned in a post that you made recently I didn't even realize is that um.

NORMA STANLEY: You know well that's not true, I didn't realize it I just never really it never hit me until I saw it in in

NORMA STANLEY: Writing I guess that the African American children are a more likely than other children to.

NORMA STANLEY: have experienced violence and impacts their their mental health as a as they grow up and I grew up in East Harlem Spanish Harlem New York.

NORMA STANLEY: And I saw violence all around me as I grew up I grew up in the hood basically, I never thought about it, when I was 16 I was 16 I might have been 15.

NORMA STANLEY: We lived in the projects and I heard, what I thought were firecrackers so as I went to look out at the people because we lived on the first floor and all I could see was like the lightning of the gun.

Khafre Jay: Yeah.

NORMA STANLEY: They were shooting somebody, I don't know who was I found out, the person who got shot was later, it was a friend of the brother of a friend of mine uh but you know right after that my mother said, we are leaving. I'm gonna get you up out of here.

NORMA STANLEY: Um so I saw a lot of it my mother coming from the Caribbean my mother kept us kind of sheltered.

NORMA STANLEY: So we didn't get we didn't we weren't out didn't get involved in any of that stuff but I saw it.

Khafre Jay: Yeah.

NORMA STANLEY: Um you know I think you're right.

NORMA STANLEY: To see that kind of thing all the time, definitely will impact your mental health, I mean.

NORMA STANLEY: Can't event imagine.

NORMA STANLEY: Can you speak a little bit about what you know. Of that.

Khafre Jay: Yeah, yeah you know I mean We grew up in very similar situations, I grew up in the Hunter's Point San Francisco a spot that's definitely not on the tourist map.

Khafre Jay: Even though we have the oldest Opera House west of the Mississippi.

Khafre Jay: But um yeah you know violence was a part of my life and.

Khafre Jay: You know i'm really new to this mental health game, you know i'm really new to this activism game matter of fact, I started my progression even understanding patriarchy as deep as I do now, when I started hip hop for change, you know.

Khafre Jay: starting a social justice org that's rooted in egalitarian practices with a bunch of really bad as activists women around you and and queer folks like i've been coming into my own.

Khafre Jay: learning what our Community really needs you know and learning my Community better than I ever have and that's why I've been stepping into this mental health sphere.

Khafre Jay: Because I just realized that I have ptsd you know i'm saying for the last few years and I grew up in that, and I was beaten up at gunpoint twice by the S-F-P-D before I was 17.

Khafre Jay: You know first day I cashed my first paycheck and then three friends work for the SF league urban gardens and we went to the bank, at the same time to cash our checks and somebody said these 15 year old black men are robbing the bank.

NORMA STANLEY: Oh, no.

Khafre Jay: And so I, yeah so I know what the SFPD looks like when they think you're robbing a bank.

NORMA STANLEY: Yes.

Khafre Jay: It's very violent, but I also grew up around a lot of violence, you know what I'm saying I also grew up with a lot of the other issues in the black and brown community.

Khafre Jay: out here, and you know I just learned this statistic when I started hip hop for change that 30% of kids in oakland have been diagnosed with ptsd by the CDC in 2012, and this is real, you know and.

Khafre Jay: One of the things we've done with our education program is to make sure that all our teachers are trauma informed.

Khafre Jay: And that's really, really important if we talk about the ways the school to prison pipeline, you know metastasizes.

Khafre Jay: it's in the way these teachers view these kids view them as defiant rather than you know going through some issues you know i'm saying so I really feel like.

Khafre Jay: The one thing that the White supremacy does to black and brown peoples and puts us on edge, it puts us in survival mode cortisol fight or flight all this other stuff.

Khafre Jay: But it also it also changes the way that people view us right through this white supremacist lens stereotypes, it's even worse when you look hip hop right.

Khafre Jay: Now you know and your number one media representations are that of the stereotypes that suburban white men who, by 75% of hip hop they want to see about us, you what I'm saying.

Khafre Jay: As it's always been the case so you have a lot of kids growing up in violence right there also some of them are hungry.

Khafre Jay: Right, some of them are vitamin D deficient.

Khafre Jay: You know what i'm saying, which also helps to lessens your mental health.

Khafre Jay: Excuse me, but.

Khafre Jay: But you know I think I think the ways in which we view these black and brown kids is not through a lense of empathy and the lens of their own humanity we've viewed them as what we've been conditioned by.

Khafre Jay: And that exacerbates mental health that sends kids to the prison through the schools and it manifests in every social interaction that our young black and brown kids especially who are hip hop culture deal with today.

Khafre Jay: And so I started this nonprofit and it's built off of grassroots street team model I was the first black coordinator for Greenpeace I ran their entire Bay area fundraising team and I took that model.

Khafre Jay: And I meshed it with hip hop, so in that time we can pull it over 900 people with the grassroots job wearing this in white supremacy T shirt in the full white spaces.

Khafre Jay: Talking about race having about 30 to 50 conversations a day and it gets hectic. We talked to a lot of really beautiful people, but we also get cussed out.

Khafre Jay: We also do called the "N" word.

NORMA STANLEY: That's pathetic.

Khafre Jay: Oh yeah it comes out of them, you know what I'm saying.

Khafre Jay: But you know I realized quickly that when you have the only brown diverse grassroots canvas team.

Khafre Jay: You got to deal with some different things you know i'm saying you got to deal with the issues from these communities and one of that is mental health.

Khafre Jay: And i'm saying one of that is realizing that the reason why people are late sometimes is not just because they don't care you know what I'm saying they might be dealing with other things you know and, but I think I think out what is the statistic i'm trying to remember.

Khafre Jay: there's about there's about 16% of black people that report, having mental illness.

Khafre Jay: Yes, I think that is a low number I think it's probably under reported to be quite honest.

NORMA STANLEY: I agree.

Khafre Jay: Yeah and so we're working with this beautiful diverse grassroots street team and i've got people on my team who have disorders or have different mentalities bipolar disorder or whatnot i've had a person schizophrenia on my team.

Khafre Jay: And these are like these, these named illnesses that people have told me about you know what i'm saying, other than that people are just stress and stress.

NORMA STANLEY: Stress will do it.

Khafre Jay: Yeah and i'm not a therapist i'm not a psychologist.

NORMA STANLEY: I totally get it stress will do it, I ended up with epilepsy at 48 years old, adult onset epilepsy due to stress.

NORMA STANLEY: I didn't know it was under stress, I mean I was just doing what I usually do.

NORMA STANLEY: Doing everything raising my daughter with disabilities, trying to.

NORMA STANLEY: You know, build a business and running I just do a lot because that's who I am but I was putting myself under unnecessary stress I didn't realize.

Khafre Jay: yeah.

NORMA STANLEY: I'm being very particularly now, about how I take care of myself, so if it ever comes back by the grace of God i'm no longer medication for it.

Khafre Jay: Yes.

NORMA STANLEY: You know, so that hit me between 40 I would think that was 48.

NORMA STANLEY: And I was on medication for about five years and I couldn't drive and do the things that I wanted to, they take your license if you have.

NORMA STANLEY: You know, so those are things that people tend not to think about and then, when you come in situations where you know.

NORMA STANLEY: Where our young black men are being arrested and and sometimes killed because they may have you know ptsd or autism situation and sensory situations there they don't understand and the cops are not trained.

NORMA STANLEY: These things and our children are being killed as a result and so we have to address, we have to address it from every level, you know from home, all the way to the street.

NORMA STANLEY: You know this is a real thing.

Khafre Jay: I think you also bring up a really important point, you know we put the we are taught, you know as poor black people to put the world on our shoulders right.

Khafre Jay: And we have to make it through, we gotta fight a nothin promised and aint nothin given you know there aint no time to cry get up you know you gotta.

Khafre Jay: get up and punch them harder, you know we are taught to be superheroes.

Khafre Jay: And and and and and that also gets wrapped up in patriarchy a male toxicity that I also fell into, when I was 16 - 17 trying to find my power ended up gang banging a bunch, you know what i'm saying.

Khafre Jay: And going the wrong way it took me a long time of introspection and, fortunately, you know wrapping and MCing and gave me that vehicle for introspection to get out of that.

Khafre Jay: But all that is what we're dealing with we're dealing with the superhero complex and a big need for a space to just breathe and the coping mechanisms to deal with our own trauma.

Khafre Jay: And I see that coming out in people, I see that i'm dealing with a average age of 23 for our canvases.

Khafre Jay: And they're finding themselves at the age where I found myself, so I need to provide them anything I possibly can to make sure their whole intact people and that's really what i'm working with.

NORMA STANLEY: Amen we're gonna take a quick break and come right back and speak a little bit more with Mr. Khafre Jay.

Khafre Jay: right on.

Voiceover: And now it's time for a commercial break.

[COMMERCIAL] Hi, I'm here to talk to you about springboards. 2021, 7th annual disability connect forum, save the date. It's happening Tuesday, September 14 via live stream, you know, we tag the phrase, quote unquote, We Are Better Together. Why? Because together we can achieve change, especially since this forum focuses on the intersectionality persons with disabilities. The lgbtqa+ community and Veterans, the major issues impacting these constituents and more So join us for the conversation again, the 2021 disability connect Forum livestream, Tuesday, September 14th, to learn more. Purchase a ticket and register visit w-w-w consult springboard.com. Front slash 2021 - disability - connect Front / hashtag. Welcome. Can't wait to see you there.

Voiceover: And now back to our show.

NORMA STANLEY: Well, we were just talking about the whole you know mental health issue and and and the lack of sensitivity that people who don't understand African Americans and what the trauma they have been through and a few understand a few understand quite well you know and a few don't understand.

NORMA STANLEY: I mean, let's not even get into that conversation um.

NORMA STANLEY: But yeah like you say there the.

NORMA STANLEY: Black man is not allowed to have the vulnerability to cray and to feel and to to like you said it, that black men and black women are expected to be super people.

NORMA STANLEY: And to just deal with whatever comes your way just just deal with it and keep moving, but you know that manifest itself physically, as well as mentally it does, it has to go somewhere all that stress and all that you know trauma and it has it and then we end up with issues.

NORMA STANLEY: Sometimes physical, sometimes mental and.

NORMA STANLEY: If we don't have people to talk to if we don't have people to understand and like you say just kind of debrief at times.

NORMA STANLEY: It could cause a whole nother set of issues and our children are growing into this, so your organization tell us more about what your organization is doing and.

NORMA STANLEY: You know who are some of your supporters.

Khafre Jay: yeah you know first off I just got to break down paradigm with what we are dealing with and why, after the '96 telecommunications act.

Khafre Jay: It allowed for the corporate consolidation of mass media right now three media companies times sony and universal own 90% of the means producing hip hop.

Khafre Jay: And hip hop's culture and hip hop's depiction, they own that, and you know they're million billion dollar industries, so they only place their money on what's going to make the best bet for them to make money on.

Khafre Jay: It right now, you know 80% of the audience for hip hop is suburban white men almost you know i'm saying between 18 - 24 buys about 75% of hip hop.

Khafre Jay: And they you know, in the 80s, that was fine when fight the power was the number one song and hip hop is that beautiful bridge.

Khafre Jay: But you know the industry found out it's really difficult to sell diversity diverse culture, you know what i'm saying.

Khafre Jay: and selling a culture where people have all these cultural norms and values and rules.

Khafre Jay: They figured out these white kids don't even know what's going on, and you know the easiest things to sell in America is sex drugs and violence, you know the problem is is people can play hip hop with pure blackness you know I'm saying.

Khafre Jay: And these corporations only invest in an artist and they put them on the cover of the magazine, and they put them.

Khafre Jay: On this and they put them on hip hop dx and all the they have the whole machine to make these artists So while we have you know YouTube and tick tock.

Khafre Jay: it's about bandwidth we don't ever have the same band with the $7 billion industry has so they've taken our depiction and they've turned it into stereotypes like they've always done with black and brown people in all white and controlled media period.

Khafre Jay: The problem is, is now people believe that so our kids are being treated thusly when I walk down the street.

Khafre Jay: And I don't have my daughter with me people grab their babies and I tell them I don't eat babies i'm full you baby's safe, you know what i'm saying, because I gotta say something.

Khafre Jay: But I have the coping mechanisms to be able to deal with those interactions a lot of our kids don't nor, should they have to but regardless of scaring white folks you know what i'm saying.

Khafre Jay: Because of their internalized white supremacy, I think the biggest thing is, is that, if your hip hop culture right.

Khafre Jay: Meaning you walk it you talking it you dress it, you paint it you think it you dance it you're hip hop culture.

Khafre Jay: You should be able to have access to that culture into the cultural expression to the forums and to the economy of hip hop without being exploited by the music industry that's not FUBU, it's not for us, or by us.

Khafre Jay: So what I did is I created a non profit 501 C three Community controled platform.

Khafre Jay: To read to recreate the needs of producing hip hop for local local hip hop.

Khafre Jay: You know, we have all these artists that are so powerful and they have important narratives but they can't get people to come to their shows they don't have the budgets for them, they don't have the funding and all that.

Khafre Jay: And we lose the economy around that so we started a grassroots street team stand out there, just like Greenpeace and all them, but we flag you down say talk to me about white supremacy.

Khafre Jay: And then we talk to you about the cooperation of hip hop and the racism and oppression and the criminalization of black and brown youth through that and that's what we get most of our money from those communities that are afluent.

Khafre Jay: We have 50,000 conversations about who we are, every year we take that money back, we put into educational where we're getting local hip hop artists fingerprinted TV testing trauma informed and in the schools we taught 26,000 kids K through 12.

Khafre Jay: The history of hip hop that's rooted in peace love unity, and having fun and really letting these kids know they aint doing nothing different than their parents did their ancestors they come from an unbroken chain of excellence right.

Khafre Jay: And then we teach them how to actually wrap break dance FUBU beat and DJ and, lastly, we throw fat hip hop shows where we get big organizations like.

Khafre Jay: Greenpeace, Sierra club, to sponsor so it's free and for all ages, we just had our environmental justice seminar with black thoughts, side rock from from dead prez and.

Khafre Jay: Matthew Tejada from the office of the EPA last year we had to Ilhan Omar's daughter on our panel and we invite.

Khafre Jay: Local environmental justice orgs who want to come table and connect to these.

Khafre Jay: People who create these free all age platforms to create the economy and also to pass around important issue so we're taking the game back and we're just asking people to go to hip hop for change.org and join the fight for the culture.

NORMA STANLEY: Well, I will be one of your people. Because.

Khafre Jay: Yes, Yes.

NORMA STANLEY: Because I mean, I just love it I know anything we need to do to say take back our narrative and make sure that people understand actual power, you know, and we have to, we have to create it.

Khafre Jay: Yes.

NORMA STANLEY: We have to do it ourselves and not so much depend on anybody else to do for us do it ourselves, and I love what you are doing and I love you know I don't know if you have any disabled rappers, but.

NORMA STANLEY: You know, we've got some for you.

Khafre Jay: yeah yeah.

Khafre Jay: there's there's my man.

NORMA STANLEY: Is a place that you know.

NORMA STANLEY: And that's got a place in my heart and nadine's heart and we want to make sure our community is included.

NORMA STANLEY: So you have any artists who have disabilities.

NORMA STANLEY: In additionl to mental illness or challenges are there any that you know of do you know the mass of people I can introduce you to.

Khafre Jay: This is an amazing man, named leroy who runs a nonprofit called crip hop.

Khafre Jay: And he runs a community.

Khafre Jay: Definitely able people that are wrapping.

Khafre Jay: break dancing and doing all kinds of stuff.

Khafre Jay: yeah he's a cool cool guy and really stands up for the culture,you know what I'm saying and that's The one thing it's like people hit us up and they're like you know hip hop artists like this, and this and that like yeah because hip hop is the Community.

NORMA STANLEY: It's everything

Khafre Jay: Yeah, it's everybody like so yeah you know. You know pride SF hit us up and we got PRIDE artists, you know, we had a Spanish speaking delegation go down to El Salvador like it's you know it's nothing we hip hop is everybody, you know so yes everybody's rapping in the hood.

Khafre Jay: everybody's talking and that's the thing it's like that's why hip hop is not a fad.

Khafre Jay: And disco actually went out because disco you had to dress up and have nice clothes to go to it and whatnot you had to have a whole band, and what all this other stuff but hip hop was created by people who had nothing you know what I'm saying, and they turn nothing into everything.

Khafre Jay: Right.

Khafre Jay: And that's why I table that's why that's why it is the largest organizing cultural force that humanities ever created, it will be cool of us to take it back you know because they're rappin in the streets again, right now, the president of Thailand is rapping, they're rapping in Nambibia they're rapping everywhere.

NORMA STANLEY: Everywhere.

Khafre Jay: You know so so and that's the thing we have to understand that hip hop is not what corporations, you know, make it out to be you know we all know, taco bell you know sucks but we don't get mad at Mexican people because taco bell sucks. right.

Khafre Jay: You know what I'm saying, and I think right now we're getting mad at hip hop culture.

Khafre Jay: Because corporations don't do it right, and I know that our young kids on the ground, regardless of what intersection they're in they're still doing it the same and rapping has never changed on the ground.

Khafre Jay: And hip hop has this nugget of self affirmation, which is why there's all these marginalized communities.

Khafre Jay: falling into it, because it's one of the first time that young kids get to deal with the concept of self affirmation, no matter what, no matter how the Lord built me.

Khafre Jay: You know i'm saying I need to grab this microphone, no matter how the Lord built me i'm gonna move and i'm a rock and.

Khafre Jay: i'm a going to gig you understand, and anybody can own that space and not to mention the fact that that expression is one of the most healing things that you could possibly possibly do.

Khafre Jay: yeah I mean I could just I could proselytize all day about hip hop.

NORMA STANLEY: Well I love it I wish I wish we had more time, but i'm definitely gonna be in touch with you about some opportunities, because you know I just believe that you know there's nothing there's no coincidences it was it was meant for us to meet through Ivette Lopez and and and and we're looking forward to do.

NORMA STANLEY: What we can to help you move your your mission forward I love what your mission says to so thank you so much for taking time out of your busy schedule to be a part of disabled lives matter today and i'm looking forward to continuing the conversation.

Khafre Jay: right on Thank you all so much for having me make sure you all go to hiphopforchange.org or subscribe to our newsletter will keep up to date with the culture, what we're doing and what we need, so we can take back our culture and spread nationwide all right y'all.

NORMA STANLEY: Thank you.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Disabled Lives Matter Season 1, Episode 27 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Bishop Dedric Avery (aka Oba Chikelu)

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley… yay!

NORMA STANLEY: All right.

NORMA STANLEY: Greetings everybody, my name is Norma Stanley I'm co host of disabled lives matter our regular co host ms. nadine vogel couldn't be here today, so I am kind of pitching in.

NORMA STANLEY: and taking the reins on our interview so today, we are going to be speaking with the awesome Bishop Dedric Avery, also known as oba chikelu.

NORMA STANLEY: Who is a scholar and author.

NORMA STANLEY: Someone who I greatly admire, he is the senior pastor of salt and light truth Center, which is based in decatur Georgia and he is a spiritual leader.

NORMA STANLEY: Progressive non traditional type of spiritual leader who shares information with his congregation about empowerment and enlightenment and.

NORMA STANLEY: Other like you know and enrichment, which for my company which is called e-e-e lightning which.

NORMA STANLEY: e-e-e marketing stands for enlightened empowered and enrich we're on the same page in that area, so I am so excited to have him share with us today about.

NORMA STANLEY: You know his experiences um and becoming someone who acquired a disability and how that has changed his life what he's doing.

NORMA STANLEY: To address some of those issues as an advocate Community advocate and as someone who's you know walking the journey now through this whole process so welcome to disabled lives matter Bishop avery.

Oba Chikelu- Dedric: i'm so glad to be here.

NORMA STANLEY: Well, you know i'm and I first met you, you were a young man.

NORMA STANLEY: young man who was doing your thing as a pastor.

NORMA STANLEY: And and.

NORMA STANLEY: You did not have a disability, at that time but since then, you have aquired one this was how many years ago, tell us a little bit about that experience and what happened.

Oba Chikelu- Dedric: um it started.

Oba Chikelu- Dedric: In 2015.

Oba Chikelu- Dedric: I was volunteering at a local high school.

Oba Chikelu- Dedric: In their football program as the chaplain.

Oba Chikelu- Dedric: One of the initiatives the plans that I had was to reach out to the schools and the businesses and different things and create collaboration and I was volunteering.

Oba Chikelu- Dedric: And it was a particular football game on a Friday night, it was I believe September 9 2015 i'm not sure what exactly the date but.

Oba Chikelu- Dedric: The first play of the game I just prayed with the team that they had no injuries or that they'd be covered throughout the game, and the first play of the game two of the players.

Oba Chikelu- Dedric: ran up on the side of the field to tackle one another and they rolled into my legs and that was when my journey began because I heard snap crackle and pop.

NORMA STANLEY: wow

Oba Chikelu- Dedric: and, in my mind psychologically I didn't know what was going on, because I just knew that my knee or something was just sticking out of the out of my skin and it was crazy.

Oba Chikelu- Dedric: It took them an hour to get me off of the football field to get me into an ambulance to get me to another ambulance and.

Oba Chikelu- Dedric: that's when that's when my journey began 2015.

NORMA STANLEY: And one of the things that i'm I was very impressed with the Church, that it was such an accepting um Ministry for people with disabilities.

Oba Chikelu- Dedric: Yes.

NORMA STANLEY: my daughter Sierra is a wheelchair user and I've attended many larger churches that weren't as welcoming um you know to our children, sometimes and make some noise, maybe different things like my daughter sometimes love singing she loved the music.

NORMA STANLEY: As you pull out of her seat and crawl up to the altar.

NORMA STANLEY: To be closer to the.

NORMA STANLEY: Music and a lot of services would nnot accept that so.

NORMA STANLEY: I really appreciated about your service in your ministry um tell us about what that.

NORMA STANLEY: The Church Community when it comes to people with disabilities.

NORMA STANLEY: You would think that would be more what's the word accepting and welcoming should we be feelings were those of us who have children, like mine, feel more comfortable doing services online than being their with the congregation.

Oba Chikelu- Dedric: I would say that.

Oba Chikelu- Dedric: I will say that the teachings of a spiritual Community sets the tone as it relates to the treatment of others and the teachers of our ministry week we focus on accepting and acknowledging everyone unconditionally.

Oba Chikelu- Dedric: It that it's a skill set, you have to develop that and being able to enter the inner act and engage people from different cultures perspectives.

Oba Chikelu- Dedric: Whether they have disabilities mental illness, whatever the situation is we are teaching that every humanbeing is a manifestation of the creator and so when we engage one another we're actually engaging God.

Oba Chikelu- Dedric: And so, when we do that it heightens the level of sensitivity to the needs of people and and I saw that even before I even attain this this new direction of life.

Oba Chikelu- Dedric: You and I had a lot of intensive conversations about what can we do to serve the disabled Community we'd already kind of started doing some things right, I didn't really feel hip.

Oba Chikelu- Dedric: You know, hypocritical by having the injury and being in the Community myself, because I was always supportive of the Community.

Oba Chikelu- Dedric: So the teachings of the environment, really sets the tone for the treatment of the environment.

NORMA STANLEY: mm hmm. That is important, is it comes from the head and and so you know those are the kind of things that I don't think a lot of ministries realize that they may they may be something that they are not recognizing.

NORMA STANLEY: As the leader of that particular ministry, that is not allowing that opportunity to to open up to those of us children like mine um you know I.

NORMA STANLEY: that's one of the things that will hoping to make some changes in that area from a spiritual component, as well as a Community, because.

NORMA STANLEY: faith is a big part of how parents like myself manage you know if we do a lot of praying and we depend on that that strengthen and that body of people to support and sometimes when you see that they just Basically, it seems, in some cases that i've been exposed to that you know.

NORMA STANLEY: we're more of a nuisance, it seems.

NORMA STANLEY: unwelcomed and that's something that I hope.

NORMA STANLEY: to see change as a they become more aware of how the ministries come off to others like families like mine.

Oba Chikelu- Dedric: You know, society has a way of setting pseudo standards of what's acceptable.

Oba Chikelu- Dedric: In society has is has it all figured out as to how we're supposed to look.

Oba Chikelu- Dedric: You know the size, the shape the whole nine and if anyone doesn't fit in that little scope.

Oba Chikelu- Dedric: Then we are faced with many different forms of reaction and rejection.

Oba Chikelu- Dedric: And, even in the Church, because even though.

Oba Chikelu- Dedric: You really find out what the real purpose of a church is when you have people in need, or have needs and I find that no one wants to be inconvenienced.

Oba Chikelu- Dedric: No one wants to kind of kind of inconvenience themselves for those who have needs you know, are you going to even, even in the scriptures when Jesus was killing they made provisions and they could demand and and brought him down through the ceiling.

Oba Chikelu- Dedric: Minister, whereas you know people won't even open up aisle for a person in the church today, so that tells you just kind of the world we're in and just this is how real this thing that is in the challenge, even in the spiritual houses that the disabled community has.

NORMA STANLEY: Absolutely.

Oba Chikelu- Dedric: Because I never wanted to exploit the situation because you have a lot of ministries, that would.

Oba Chikelu- Dedric: They would bring in disability members, but they will try to set it up for monetizing.

Oba Chikelu- Dedric: You know we're going to get this big grant for the Church, because now we have disabled members, you know as a good way to make some money.

Oba Chikelu- Dedric: And, and I never wanted to do that I never wanted to exploit anything for monetization.

Oba Chikelu- Dedric: Is you know that's not the right heart and that's not of God.

NORMA STANLEY: You know the disabled lives matter podcast is.

NORMA STANLEY: You become a movement, along the lines of you know, black lives matter but to people with disabilities, because there's an intersectionality when it comes to African Americans.

NORMA STANLEY: You know, basically, the 25% of population with disabilities and you know that's a major major component and people are going to have to realize that.

NORMA STANLEY: And there's so much issues when it comes to mental illness and mental health.

NORMA STANLEY: And issues that are not being addressed when it comes to some of these people who are being arrested and and not not paying attention to the fact that they may have some ptsd issues they may have some you know.

NORMA STANLEY: All sorts of issues when it comes to sensory things that they're doing and they're arresting them and end up paying attention so we're just trying to bring awareness to.

NORMA STANLEY: intersectionality of things like that, so that people can be aware and and hopefully make some positive impact and do things differently.

NORMA STANLEY: That could greater enhance enhance the quality of life for.

NORMA STANLEY: Families like mine and people with disabilities individuals as well as families, and I know that that's something that that's very important to you and I know that some issues that you've recently come across since you started this journey just in daily life that.

NORMA STANLEY: You never even thought about probably before could you share a little bit about something as basic as going grocery shopping.

Oba Chikelu- Dedric: Sure um definitely until I became disabled, I was very unknowledgeable i've always been sensitive but unknowledgeable of the reality.

Oba Chikelu- Dedric: of people who are physically challenged until I had to do tasks as simple as going to the grocery store.

Oba Chikelu- Dedric: You know a lot of people take it for granted, why just go over here and pick up some things and go home and it just sounds really easy.

Oba Chikelu- Dedric: But for people like me, I have to plan out the opportunity to go to go to stores, first of all I have to find the grocery stores that have the scooters for people like myself who have impairment in walking.

Oba Chikelu- Dedric: Then you have to find the locations that have the ones that actually work or operable that's another one, because they might have four sitting there, but only one works.

Oba Chikelu- Dedric: So you see that that that particular store or franchise just did what was you know is being asked of them to do.

Oba Chikelu- Dedric: They did the bare minimum, but there's no sense of maintenance no sense of reception no sense of sensitivity of you know nothing you know so.

Oba Chikelu- Dedric: it's very difficult, not only getting the groceries putting them in the car but going home and creating your own independent regiment of how to unload the things that you have.

Oba Chikelu- Dedric: That you bought from the store those little simple things that people take for granted are monumental task for people like myself.

NORMA STANLEY: yeah I can imagine, I know that I had sustained an injury that I don't know exactly where came from it something in my arm and the doctor told me it was um.

NORMA STANLEY: I guess it was something that had come over time because I pick up and puts sierra's wheelchiar in and out of my car, since she was you know, having to use a wheelchair and i guess.

NORMA STANLEY: It wore on my shoulder, and it was very painful and that same thing happened, I could not collect groceries the way I used to and had to be very particular of things that I was lifting and how I lifted them so that I wouldn't reinjure my arm and because I need I need everything to pick up sierra's wheelchair.

NORMA STANLEY: And you know you don't think about these things, and those are some of the things that.

NORMA STANLEY: they're trying to generate awareness about through disabled lives matter i'm the kind of business that nadine vogel of springboard consulting as she does i'm.

NORMA STANLEY: Working with companies to understand the workforce and the marketplace when it comes to people with disabilities and the kind of work that I do of.

NORMA STANLEY: multicultural communications, and you know and helping companies understand diversity equity inclusion and we both have a similar.

NORMA STANLEY: mission in you know, helping people understand the viability of this community and why they need to be paying more attention to making things.

NORMA STANLEY: Better because of who we are as a population and how important we are to the population anybody can acquire one at any time, so you can't ignore.

NORMA STANLEY: This population we're gonna take a quick break and then come back and talk a little bit about you know some of the things that that you're doing as an individual in through your ministry and just continue the conversation with bishop dedric avery.

Voiceover: And now it's time for a commercial break.

Voiceover: And now back to our show.

NORMA STANLEY: All right, and we are back speaking with Bishop Dedric avery, also known as Oba Chikelu, and like I said he has a very.

NORMA STANLEY: Non traditional church ministry in decatur Georgia and i'm I am actually one of the Members and I just you know wanted him to share because there's some and i've been to some large churches in the mega churches that i've been to some small ones and.

NORMA STANLEY: Some of them have not been as as as welcoming and and that was something that drew me and it drew my daughter, because I can tell when she's not comfortable.

NORMA STANLEY: And she can she can tell when people don't make her feel comfortable she lets me know, and so you know, so this particular you know the space at.

NORMA STANLEY: salt and life truth Center provides is something that you know I would love for families to experience and you know the families.

NORMA STANLEY: stay home because we don't want to we don't want to bother anybody, and some of our children, make a lot of noise when they are having fun when they are enjoying themselves just noisy they can't help it they that's how they express themselves, they do things that are not what.

NORMA STANLEY: Typical children would do and i've come across a lot of situations we have heard some horror stories with churches have actually put member that have put children like mine out.

NORMA STANLEY: um you know and things i've heard some stuff I mean you know lived experiences of people who, I know, so you know so it's very important to me to try to make an impact.

NORMA STANLEY: For to the just the work that you're trying to do with the Community to change change the mindset and the approach some ministries have to people with disabilities.

NORMA STANLEY: The younger ones.

Oba Chikelu- Dedric: yes.

Oba Chikelu- Dedric: Once again, we have to realize that we're in a new paradigm is a paradigm shift and I always say this so that people can truly understand what's being said.

Oba Chikelu- Dedric: there's a reset that's happening, you know with the shutdown and the virus that we have and some of the things that have been ushered in.

Oba Chikelu- Dedric: It's the transitioning.

Oba Chikelu- Dedric: And the way things have been done, the institutional mindsets are there they're going out they're phasing out people are more independent and and thinking they're more.

Oba Chikelu- Dedric: focused on self care growing trying to figure out things they've taken advantage of opportunities of seeking counsel.

Oba Chikelu- Dedric: Life coaches and different things, because people are tired of.

Oba Chikelu- Dedric: being stuck and and one of the things that comes with that is the revolutionary mindset of how we are to see humanity.

Oba Chikelu- Dedric: The way we see humanity is is is a lot more upgraded than it was before.

Oba Chikelu- Dedric: People are starting to foster more mutual respect for one another, you see a lot of organizations that are in activism and advocacy for the small person.

Oba Chikelu- Dedric: And we, we see a new.

Oba Chikelu- Dedric: Interest infrastructure being created.

Oba Chikelu- Dedric: it's in this small stage which is growing it's going to grow even more, because when you look at the disability community, it is really a force to be reckoned with.

Oba Chikelu- Dedric: But they don't acknowledge it because it does not produce revenue does not produce an eco economic.

Oba Chikelu- Dedric: influence, and I would say that's, the main thing.

Oba Chikelu- Dedric: Because they're more disabled people than there are probably any other group of people in America at least.

Oba Chikelu- Dedric: But we don't produce the economic strength that will make the legislators or anybody else really look twice matter of fact, they are putting money into the disability community and they see it as a liability in many cases.

NORMA STANLEY: and that's because they don't understand that the monetary value, because you know just in the U.S, alone, their are 64 million people in the US alone, you know with disabilities and you know 1.3 or so billion people around the world, but the economic when you when you add their friends their friends and family network.

NORMA STANLEY: that's huge you know when you talk about globally, that's like eight trillion dollars.

NORMA STANLEY: mm hmm I mean you know, and when the US I forget about eight I forget what the is what isn't us but globally is about 8 trillion

Oba Chikelu- Dedric: wow

NORMA STANLEY: when you add the family and friend network.

Oba Chikelu- Dedric: Right.

NORMA STANLEY: and you know, we are all over the world and it is a lot of money there they just have not figured out how to focus it because they didn't understand that about the black Community either or the Hispanic community.

Oba Chikelu- Dedric: Right.

NORMA STANLEY: So we started getting really vocal about the fact that we need to be included and that's what the disability community is doing now, and very vocal.

NORMA STANLEY: about being included and that's where they're starting to listen it's still not there, what they need to be starting to listen and pay attention, which is what we have to do.

Oba Chikelu- Dedric: Any movement, you have to assess the what if, as you approach the power structure and speaking truth to power to convince them of the need of this group that's that's in activism.

Oba Chikelu- Dedric: You have to present the case that if we were to come together in unity and do this, this is how would it impact, the bottom line.

Oba Chikelu- Dedric: of your structure you know if we can ever come together and have unified efforts but there's a lot of division even how they perceive the disability community.

Oba Chikelu- Dedric: You have the profound, then you have those who are functional you have so many different types of when you have even in your in your retail settings you have four handicapped parking spots, but you have a parking lot full of handicap stickers.

Oba Chikelu- Dedric: You know, so what is truly disable you know what is truly a true member of the disability community, and so, when you are able to even define that it will probably bring bring some definition to the struggle.

NORMA STANLEY: And not unification is definitely going to be important and that's one of the things that we're trying to help generate awareness about because, again, the.

NORMA STANLEY: various factions is you know down syndrome community and there's the autism community and the.

NORMA STANLEY: cerebral palsy community in the mental health community and but it's one Community is the visible and the invisible and it's but it's really one community.

NORMA STANLEY: And what I find sometimes is that you know each community content okay autism, is where everything is when you hear disability it's were you go to automatically.

Oba Chikelu- Dedric: right right.

NORMA STANLEY: And, and that is something that usually always bothered me becuase.

NORMA STANLEY: My daughter has cerebral palsy. You know.

Oba Chikelu- Dedric: It depends on which wealthy people have children that are affected.

NORMA STANLEY: that's true too that where the attention goes.

NORMA STANLEY: A lot so it's a struggle and it is almost an uphill battle, but.

NORMA STANLEY: that's life and you just have to keep struggling and pushing pushing past the obstacles, which is what you know shows like disabled lives.

NORMA STANLEY: matter podcast is trying to do, push past the obstacle and talk about opportunities that people with disabilities are bringing to the table and and contributions that they are bring to the table that.

NORMA STANLEY: General media tends not to talk about as much, there are some people in the Community, what so powerful amazing things the A-D-A came to because of revolutionaries.

NORMA STANLEY: that's right, you know judy heumann and the people who bought for and crawled the steps you know when they couldn't walk to the protest, so it could come into to being if you saw the the the netflix documentary crip camp if you haven't seen it check it out.

Oba Chikelu- Dedric: Oh crip camp, okay.

NORMA STANLEY: crip camp that's where it all started at a camp, some of those counselors who worked as counselors at Camp called camp Jened

NORMA STANLEY: Who moved into activists for the A-D-A.

NORMA STANLEY: And so it's a powerful of powerful movie but you know i'm excited about you know, like I said just knowing the fact that.

NORMA STANLEY: becoming a leader in this area and and working towards the goal of making positive change, which is what we're trying to do an individual areas.

NORMA STANLEY: So tell us you know, in addition to being a pastor you also an actor, you also a businessman tell us some of the areas that you would really like to make some impact as you move forward.

Oba Chikelu- Dedric: Uh listen everything that i'm about of I first of all want to put my emphasis on modeling.

Oba Chikelu- Dedric: The reality of a disabled person in a victorious state.

Oba Chikelu- Dedric: A person who is definitely persevering through the disability to produce and maintain a certain excellence in life.

Oba Chikelu- Dedric: to kind of regress a bit when I initially was told by my doctor that I would never be able to walk again in the normal normalcy of other people, I had to make a decision at that time whether to quit roll over die or to fight.

Oba Chikelu- Dedric: And I realized that in many of the things i'm involved in i'm in leadership and people are watching how I negotiate.

Oba Chikelu- Dedric: My the things that I do you know how I handle things and.

Oba Chikelu- Dedric: Just just just that whole strength piece.

Oba Chikelu- Dedric: So you know with with the with the spiritual Center it's the same thing teaching, but then modeling perseverance showing people how to maintain.

Oba Chikelu- Dedric: Who, you are in the midst of challenges, not losing your composure losing your perspective or your worldview because of what's going on in your life and then even as a writer.

Oba Chikelu- Dedric: That deals with that.

Oba Chikelu- Dedric: I happen to be consistent as well you know going to the meetings and being visible in in in and showing that you are just as functional as anybody else it takes a little bit more effort but that's part of the fight, you know.

Oba Chikelu- Dedric: The fact that you have to show up for the fight, you know.

Oba Chikelu- Dedric: I go to the water aerobics for therapy.

Oba Chikelu- Dedric: I go to strength training with my personal trainer just trying to be functional and fight the fight, you know and show people.

Oba Chikelu- Dedric: That regardless of what is happening that I have a strong mental perspective and optimistic perspective as to how to still get the results in life and fulfill your mission and assignment.

Oba Chikelu- Dedric: You know, without quitting or showing that you know you can handle the situation.

NORMA STANLEY: I agree, I when people are always telling me how strong I am and they're so amazed it's like you know i'm not doing anything else other than trying to have my daughter have the best life possible so it takes a little bit more work because she's full care.

NORMA STANLEY: But I don't want her to miss out on anything so i'm not doing anything more than any other mother would do.

Oba Chikelu- Dedric: But I would tell you norma, you are a source of inspiration for a lot of people, the fact that you commit your life, to make sure that your daughter had a normal life.

Oba Chikelu- Dedric: You sacrificed and now you're at a place where you are operating in your endeavors but you still you didn't leave the first love.

Oba Chikelu- Dedric: Even though you're doing your your businesses and different things but your heart still goes back to your daughter, and the disabled community, so you are to be honest, if I have flowers right now given to you right now.

Oba Chikelu- Dedric: You certainly.

NORMA STANLEY: Youknow just do it, you know that's what my heart to do and and and that's what I believe my purposes is to use my gifts and talents and skills, whatever those are.

NORMA STANLEY: to generate awareness about this Community, and all that it brings to the table and it brings some powerful talents and abilities and skills and contributions that people don't talk about people in that really sharing and we need to just need to know.

NORMA STANLEY: I was just talking with Ivette a bit earlier about the.

NORMA STANLEY: The the Paralympics were not part of the Olympics, they weren't shown on TV.

NORMA STANLEY: yeah, why not.

NORMA STANLEY: Right it doesn't make any sense.

NORMA STANLEY: Those people work really hard to train.

NORMA STANLEY: They want to be seen to.

Oba Chikelu- Dedric: That's right.

NORMA STANLEY: And they didn't make a point to show them and that's just unfortunate so those kinds of thing's just have to change.

Oba Chikelu- Dedric: What would have to happen is the regular Olympic athletes would have to to go into activism for that.

NORMA STANLEY: yeah.

Oba Chikelu- Dedric: On that level, they will have to be sacrificial to say hey we're not going to do this until you do that for for that Community as well.

Oba Chikelu- Dedric: I don't know if anybody ever think that big, but it would have to be people that will stop the process of the regular Olympics, so that will give attention to the spectrum, from.

NORMA STANLEY: Which is what's happening now, unfortunately with the whole what happened to George floyd and everything and now people are starting to realize that racism really does exist and we need to make some changes in our with.

NORMA STANLEY: The police policing and things like that, but it was always there, but until people started saying, people who are you know, not necessarily us started saying.

NORMA STANLEY: yeah this is real and we have to address it i'm nobody was really listening and so yeah you probably.

NORMA STANLEY: right, you probably need some people who are not actually who don't necessarily have a connection to the Community, but want to help make some things those of us who are making the most noise have a connection to the community already.

Oba Chikelu- Dedric: Yes, it has to be people who are afluent away from the community that has a heart for the struggle to make more of an influence, because if the athletes.

Oba Chikelu- Dedric: boycotted or were very vocal or had some type of unified commemoration to give attention to the special needs in the Olympics.

Oba Chikelu- Dedric: Then it would be more powerful powerful and it will be heard, but if you're dealing with the the powers that be they're going to see how can we make more money if we can't make money from it, if you cannot.

NORMA STANLEY: It all comes down to economics.

Oba Chikelu- Dedric: comes down to economics, you know who wants to see little Johnny run across the field or miss Sarah with no legs do gymnastics you know and look at it, with the right mindset, not as a spectacle, but as competition on a special level.

NORMA STANLEY: level that.

NORMA STANLEY: Most people would never be able to do and so many again athletes who are just accomplishing such amazing things but.

NORMA STANLEY: When you have situations like you know Simone biles being ridiculed because she had to take a mental health break as fantastic, as she is the typical athlete it's a growth it's a it's an education and growth process that we just have to keep moving towards and.

NORMA STANLEY: And it's just the way it is.

Oba Chikelu- Dedric: That, I want to bring out the fact that.

Oba Chikelu- Dedric: Me being a veteran.

Oba Chikelu- Dedric: When people see me walk into a room know that i'm a veteran and not knowing what happened to me it seems to be more uplift and respect.

Oba Chikelu- Dedric: in thinking that that was something that was acquired in the military service.

Oba Chikelu- Dedric: So if you're disabled by military service, it seems to be a whole different world view and value as it relates to a person that civilian with a disability, the value in your stock goes down.

Oba Chikelu- Dedric: So when they find out it wasn't a military service related situation they go, oh okay.

Oba Chikelu- Dedric: You know.

NORMA STANLEY: And it should not be either one.

Oba Chikelu- Dedric: yeah but that's the way people process this yeah yeah.

Oba Chikelu- Dedric: like, if I were my veteran hat and go anywhere and they see me with that Walker they are just they want to salute me.

Oba Chikelu- Dedric: I get that open the doors for me, I get smiles it's like every day is Memorial Day and fourth of July, you know what i'm saying you know veterans day.

Oba Chikelu- Dedric: But when I take that hat off and become a civilian i'm just that the guy with the Walker and let's let's help him out because they don't open the doors for me, because they care for me, they want to make sure I get out of the building without falling for lawsuit.

NORMA STANLEY: wow.

Oba Chikelu- Dedric: You can feel the spirit of the treatment of the people, oh, let me help you why do you want to help me, are you helping me because you want to make sure your policies and procedures are right, if I fall.

Oba Chikelu- Dedric: Or do you really care about me, you know these are things that psychologically, we have to deal with, and you have to be strong.

Oba Chikelu- Dedric: Because people treat you many different ways, when you leave the four walls of your home you go into this world that has so many perspectives you're going to be met by many of them within the course of eight hour day.

NORMA STANLEY: Absolutely and and that's where faith and a spiritual foundation like I said it's always something that I fall back on.

NORMA STANLEY: And so you know, at the end of the show but i'm happy to share some people some you know where they can reach you how to keep in touch with you at salt and life truth Center and need some more information.

Oba Chikelu- Dedric: salt and life truth center's in decatur Georgia, the address is 2622 snapfinger road decatur Georgia 30034.

Oba Chikelu- Dedric: We have a website is the.

NORMA STANLEY: www.sltcempowermentzone.com

Oba Chikelu- Dedric: That way you can find out more about us and learn more about us, but please come we have services in the building twice a month, the first Sunday is at 9am the third Sunday is at 10am and we also have a Teleservice that we have on these on the second and fourth Sunday.

NORMA STANLEY: that's right, so you guys it's an awesome awesome ministry and i'm thankful to be a part of it, and I just wanted to have Bishop avery share.

NORMA STANLEY: Some of His story, because I think it's something that people need to understand because there but for the grace of God, for all of us all of this and all it takes we're all just one incident away.

NORMA STANLEY: from being a part a member of the disability community and that's just a reality, so thank you for taking time out of your busy schedule to be on disabled lives matter and we'll be talking with you again soon.

Oba Chikelu- Dedric: Thank you so much, I appreciate the opportunity for being on here today.

NORMA STANLEY: Thank you.

Oba Chikelu- Dedric: See you later.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Disabled Lives Matter Season 1, Episode 26 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Francine Falk-Allen

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley… yay!

NORMA STANLEY: Hello everybody and i'm norma Stanley co host of disabled lives matter and our co host nadine vogel.

NORMA STANLEY: can't be here today, but I am going to be interviewing miss Francine folk Alan Allen who is an author and she has written a few books she's also a disability activist and.

NORMA STANLEY: advocate and has written a few books and I will be talking about those on the show today at three years old, she was.

NORMA STANLEY: You know contacted a polio, and the temporary lost the ability to stand and walk she's gonna share a little bit about the challenges, she shared or has experienced.

NORMA STANLEY: growing up with someone who, you know as someone who had polio and disability and actually you know overcame some of those challenges.

NORMA STANLEY: And I had a couple questions I wanted to ask you some examples in Francine and welcome to disabled lives matter which is basically more than just the show more than just a podcast we are working on it becoming a movement.

NORMA STANLEY: So. tell us a little bit about your story.

Francine Falk-Allen: Thank you, thank you norma um well I had polio, when I was three in Los Angeles, and I was hospitalized for six months at three years old, which kind of put an end to my toddler phase of life.

Francine Falk-Allen: And they told my parents, I would never walk again but.

Francine Falk-Allen: Some of the physical therapist felt that I had the potential to learn to walk so they did get me up on little crutches which I used for about three years and and wore braces and the whole thing and.

Francine Falk-Allen: Finally, was able to let go of those for a number of years and then, of course, when I got into my 20s I found that having a short.

Francine Falk-Allen: Mostly paralyzed leg was difficult, and I mean it had always been but I realized that it would be helpful to use a cane, so I started using a cane.

Francine Falk-Allen: And now that i'm in my 70s, I frequently use lofstrand crutches arm cuff crutches if I have to walk any distance so it's been a.

Francine Falk-Allen: You know, a journey of adapting and I think that that's that's true for for anyone who has a disability and also their family members it's it's a process of adapting over time.

NORMA STANLEY: Absolutely, and I can imagine as a child growing up that must have been challenged, because today we have so many instances where children with disabilities are you know bullied I was wondering if that is something that you dealt with you know, growing up.

Francine Falk-Allen: Oh yes.

Francine Falk-Allen: Yes, I was.

Francine Falk-Allen: I had there was a there was a boy in kindergarten who used to hold me up against the wall, with his big fat stomach and it was very frightening.

Francine Falk-Allen: And if there wasn't a teacher nearby he knew that he had a lot of power over me and he started calling me hop along Cassidy.

Francine Falk-Allen: That was the cowboy in the 50s that was on TV because I limped so badly and then the other kids started calling me hop along Cassidy.

Francine Falk-Allen: And they used to grab my things and run away with them, because they knew it couldn't run after them and but not everyone was like that it was there were a few kids that were mean that way and.

Francine Falk-Allen: There was the same boy actually hit me in the in the solar plexus and knocked the wind out of me at one point and.

Francine Falk-Allen: And the principal was called in on that one and he was punished because there was still corporal punishment in those days, and he never bothered me again but yeah there were incidences like that quite a bit yeah.

NORMA STANLEY: wow so How did the challenges, you had growing up like what are the things you shared in one of your books is.

NORMA STANLEY: you had some issues with driving but you were able to drive, you said you just came back with you that was that was fascinating.

NORMA STANLEY: because you know of your leg, you had a special way of driving.

Francine Falk-Allen: Yes, um I couldn't use my right leg to drive because I don't have any ankle motion and I tried using my right leg and was quite dangerous, because I was pushing from the hip I didn't really have that much control over the accelerator, so I learned to drive with my left foot.

Francine Falk-Allen: which meant that I had to.

Francine Falk-Allen: Sit kind of sideways and I would use my left foot for both the accelerator, and the brake and then, when I was in my early 40s and it's amazing to me that it took this long to get to this.

Francine Falk-Allen: But I was driving a lot, because my boyfriend who became my fiance and I eventually married him lived to 60 miles away, and it was really hard on my back at that point.

Francine Falk-Allen: So I learned that you could get a left foot accelerator, and I had one installed in my car at the time, and I have one in my current car car and oh jeez it made such a difference.

Francine Falk-Allen: It allowed me to drive without pain So yes.

NORMA STANLEY: that's interesting because I truly didn't know there was left foot accelerators so that's definitely is news, to me, I mean it makes sense because other people who have had these kind of challenges need those types of things so that's good to know.

NORMA STANLEY: um, so tell us about your book I love the title i'm no spring chicken.

NORMA STANLEY: Stories and advice from a wild handicapper in who is aging in the disabilities and again.

Francine Falk-Allen: Stars and advice from a wild handicapper on aging and disability.

Francine Falk-Allen: yeah so I felt that I had a lot to share with regard to adapting to aging.

Francine Falk-Allen: And aging with the disability so most people as they age end up having some kind of physical challenge, whether it's.

Francine Falk-Allen: You know very sore hip or bad back or needs that need replacing or whatever, and also things like.

Francine Falk-Allen: Becoming overweight that often is part of it, especially if you have difficulty walking so I felt like I had a lot of suggestions about ways to deal with it and also.

Francine Falk-Allen: Also ways for family members to adapt to the changes in people's bodies, because there is a lot of women taking care of their parents now.

Francine Falk-Allen: it's it's it's not it's very challenging to be raising kids and taking care of your parents as well.

NORMA STANLEY: Absolutely, and as I am the primary caregiver my adult daughter, who has intellectual and physical disabilities, and so you know, as I age and i'm in my early 60s that also is.

NORMA STANLEY: especially challenging, so I would love to hear what you share in your book about a whole thing about aging the some of the things that you care about in your book specifically that you could share with us.

Francine Falk-Allen: Oh gosh let's see um well, one of the things that I share, which is kind of amusing is that when people are in a wheelchair it's it's condescending to pat them on the head.

Francine Falk-Allen: And it's it's kind of natural for people to be affectionate in that way with someone that they care for but it's like it's like treating someone like a puppy so that's.

Francine Falk-Allen: that's The kind of thing that.

Francine Falk-Allen: I suggest that you don't do that my sister was in a wheelchair when she was much older and.

Francine Falk-Allen: Her husband used to pat on the head and she just hated it and i've had that happen to i've had it happen in airports, when I needed to use a wheelchair so that's something that is a very simple thing but.

Francine Falk-Allen: Another thing is to sit down at people's eye level, because if you can't stand at parties or other gatherings and have.

Francine Falk-Allen: Direct eye contact with people it's really great if they sit down next to you or if you can find a stool at a party, so that you sit up at the same height, you know that sort of thing and.

Francine Falk-Allen: I mean those are just simple physical things, but I also suggest that.

Francine Falk-Allen: For instance, it's it's really kind it brings people down to say gosh I don't know how you deal with this, I just I would feel terrible if this had happened to me.

Francine Falk-Allen: I'm mean that is not encouraging it's more encouraging to say.

Francine Falk-Allen: You know how are you doing, and you can ask people How did this happen to you, it must have been hard you want to tell me about it, because a lot of times it's it's really helpful for a person to have an opportunity to explain what happened and you deal with it.

NORMA STANLEY: You know just basic disability etiquette which a lot of people don't have.

NORMA STANLEY: yeah they haven't been exposed or been around.

NORMA STANLEY: The Community or an individual with a disability, you don't know what to do and don't know what to say, and many people are afraid they are going to say and do the wrong thing and sometimes they do.

NORMA STANLEY: I was in a store, I think I was in Virginia attending a friend a family members home coming service and I went to the store with my daughter who's in a wheelchair user and the person who is the cashier said Oh, what happened to your daughter um let's not sure what's wrong with your daughter.

Francine Falk-Allen: Oh

NORMA STANLEY: There is nothing wrong with her at all, she was born with cerebral palsy and as a result, she cannot walk but you know she could do a lot of things she cannot walk and she cannot talk, but that was part of her birth process and to she's a very happy child.

NORMA STANLEY: a young woman rather because my daughter is no longer child, but I called her a child because she's my child.

Francine Falk-Allen: yeah right.

NORMA STANLEY: yeah you do have to you have to educate people on what they do and say that makes the person who.

NORMA STANLEY: Is i'm disabled feel comfortable and and not be afraid to talk, but you don't want to invade their personal space either you know, by patting somebody on the head you don't know almost like you know, being an African American and somebody white comes up, and you know touches the braids.

NORMA STANLEY: You know if you don't do things like that. You know.

NORMA STANLEY: So it's a learning process and it's and you have to be willing to learn.

NORMA STANLEY: And you have to be willing to be open to learning new things about this Community, and this population and that's part of what we tried to do here on the disabled lives matter podcast.

NORMA STANLEY: Is share information that can you know again that people know how vital and how vocal this Community really is, and really you know they're not putting up with a lot of nonsense that we probably took a lot of back in the day.

Francine Falk-Allen: Yes, yes i'm while you're speaking I thought of a couple of other things that have happened to me i've had especially doctors, but also friends.

Francine Falk-Allen: refer to my polio leg is my bad leg.

Francine Falk-Allen: To call it that, too, when I was younger my bad leg and I realized that it's not you know it's worked really hard to accommodate me and try to keep up and it's a really good leg, so I call it my weaker leg.

Francine Falk-Allen: And it's much more accurate and uh oh i'm sorry it slipped my mind I had another thought that maybe it'll come up later sorry.

NORMA STANLEY: Well that's Okay, so you know is your book kind of humorous the title sounds like it would be a little bit funny you know no spring chicken I guess i'm aging too so it's.

NORMA STANLEY: I find the title kind of funny but you know, the point is that you have to look at our lives with a little bit of humor.

NORMA STANLEY: You know to be able to get through some of the challenges that we deal with on a daily basis that's just me, it should be, I mean.

NORMA STANLEY: Every day, is not a day of you know gloom and doom there's some amazing moments that take place in our lives as people with disabilities invisible or visible.

NORMA STANLEY: And, not to say i'm a caregiver, and so there are days, where you know with yeah I sit and cry sometimes, but there are days when I am as happy as a you know a clam because.

NORMA STANLEY: she's been a blessing to me and i've learned so much about the population and the Community and and have found that it is something that I can help through my journalism background.

NORMA STANLEY: make a difference, by just sharing stories like yours so um tell us about a little bit about your book and we felt compelled to write it.

Francine Falk-Allen: I I had I had written my first book about my my experience of polio growing up as a handicapped child and Oh, I want to say that I do use the word handicap.

Francine Falk-Allen: Somewhat briefly.

Francine Falk-Allen: I did not understand until maybe three or four years ago that the disabled Community preferred person with a disability, and I understand that and I respect it, but I have always felt like.

Francine Falk-Allen: handicap was not a bad term and that it it describes someone who needs a little bit of assistance and is able, but needs some assistance so i'm you know I use that term but.

Francine Falk-Allen: I had written my book about my my experience of being a disabled child in and and, eventually, of course, the disabled woman and the challenges that I face in and not a poster child and.

Francine Falk-Allen: I did have a lot of things that I wanted to say which my editor felt were more like self help, so I saved some material and then I magnified it and I especially talked a lot about disability travel in no spring chicken.

NORMA STANLEY: Great.

Francine Falk-Allen: Becuase I think a lot of people tend to think that you can't travel anymore, once you have a disability, you just have to adapt and there, there you have to do more, planning more advanced planning, make sure that.

Francine Falk-Allen: The place that you're going to stay has an elevator not so great to stay in bed and breakfast because they almost always have stairs unless they have a downstairs bedroom and the things like that and and planning to get a wheelchair at the airport, if you need one and.

Francine Falk-Allen: Adapting to have there's another section about adapting to assistive devices, a lot of times older people don't want to start using assistive devices like canes crutches walkers and wheelchairs and they can.

Francine Falk-Allen: scooters especially they can really assist you to have a better life, so I talked about that you know don't want to use them too soon, because you do want to keep.

Francine Falk-Allen: Exercising the muscles and using them to stand up, but when it gets to the point where you're staying home all the time it's time to look at how you could use some devices in order to get out into the world, even if it's just going to the park.

Francine Falk-Allen: Because it isn't healthy to stay home all the time.

NORMA STANLEY: Absolutely, and I take a quick break and and for commercials, but I do want to come back and talk a little bit more about the travel aspect because accessibility is important, and some of these.

NORMA STANLEY: Some of the hotels have gotten better in terms of you know cruise lines and things that are still some needs, I think that that needs to be addressed and i'd like to be able to talk to you a little bit about that.

NORMA STANLEY: Because that's something that I typically like to travel with my daughter, who is a wheelchair user, so we are going to take a quick break and come back to disabled lives matter and speaking with Francine Falk Allen.

Voiceover: And now it's time for a commercial break.

Voiceover: And now back to our show.

NORMA STANLEY: And we're back speaking with miss Francine Falk Allen and i'm normally Stanley and our co host nadine vogel couldn't make it today, but we are having a wonderful conversation.

NORMA STANLEY: About Francine's work as an author and as an advocate for the disability community and she was just talking a little bit about our.

NORMA STANLEY: A travel at people with disabilities and traveling and I would that's something that's near and dear to my heart.

NORMA STANLEY: I love to travel and I love to take my daughter, who is a wheelchair user with me and I know i'm one time we took cruise and we're getting off at the Bahamas and.

NORMA STANLEY: The way they had to get off of that ramp was kind of scary because I mean you know it has some one in the front and back and i'm walking backwards on a this really high thing.

NORMA STANLEY: And I said Oh, my goodness that was that was a little scary and then other times when they could not let her get on to we were going to an island, and the water was very choppy and.

NORMA STANLEY: They basically said I don't think it's a good idea for her to come off, and I said that's okay you don't have to tell me twice that's Okay, it looks like to me I'll just stay on the boat on the ship but there's so much when we travel like I was just in Las Vegas in May, and they were just opening up and I had my daughter with me and.

NORMA STANLEY: I love to walk and i'm always pushing Sierra in her chair and there was, you know that I don't know if you've been to Las Vegas.

NORMA STANLEY: You get to a certain point where you have to take you know either an elevator the steps, or you know.

NORMA STANLEY: elevator or the steps or an escalator.

NORMA STANLEY: but the elevator wasn't working to get to the other side.

Francine Falk-Allen: Oh. NORMA STANLEY: So i'm had to turn around and go the other way and I was kind of disappointed, because you know something I won't see on the other side and there was no way to get up there, or over there and I said I thought you guys.

NORMA STANLEY: were supposed to be open.

NORMA STANLEY: You know how to do not have the elevated open there's a lot of seniors.

NORMA STANLEY: that travel to Las Vegas.

Francine Falk-Allen: Yes.

NORMA STANLEY: in wheelchairs and and scooters and anything else and you know and i'm sure they're headed to the same situation.

NORMA STANLEY: And so those kind of things cities, need to be paying attention to the accessibility in every way, shape or form and not enough people paying attention, I think, to the needs of people with disabilities who, like to travel and not just travel, but.

NORMA STANLEY: You know in grocery stores and things like that there's so many issues and there is so much I could talk about but go ahead.

NORMA STANLEY: share what your perspective is on that.

Francine Falk-Allen: I, I find that the most important thing to do when you're planning a trip, if you have a disability is to call ahead and find out what's going on.

Francine Falk-Allen: Because one of the biggest questions for me is is there an elevator and.

Francine Falk-Allen: You know if we're going to be upstairs and I also have usually call several times and make sure that I get a room that's not too far down the hall, because I can walk.

Francine Falk-Allen: But I can't walk long distances very easily, I have to use my crutches so if if we're somewhere near the elevator then i'm able to go down to a lobby if that's where the breakfast is and I don't necessarily have to take my scooter.

Francine Falk-Allen: But yes, I mean uh it's unrealistic to plan a trip to a place where there are lots of hills, for instance, especially if someone's going to be pushing wheelchair but.

Francine Falk-Allen: Even as a person who uses crutches i'm certainly not going to go to positano Italy or to Portugal, where there are tons and tons of stairs.

Francine Falk-Allen: And that's just an unrealistic thing, but there are cities like Las Vegas is pretty flat so that tends to be a good place if you have a scooter or you know some way to get from one place to another, but I think that.

Francine Falk-Allen: Knowing the terrain, of the place that you're going to go is is really a big deal I have questions that I always ask you know, one of one of them is is there an elevator I also.

Francine Falk-Allen: Usually will always try to make sure that there is a restaurant on site or right next door, so that I don't have to go three blocks to get breakfast because, for some people, that would be a nice walk, but for me it's a problem.

Francine Falk-Allen: So you have to find out about those things, and I find that cities tend to be an easy place to go, because you can get.

Francine Falk-Allen: An uber or lyft or a taxi to get from one place to another fairly easily it's not so easy getting on and off buses, but that also.

Francine Falk-Allen: begs the question of how much money you have so it's better to take fewer trips save up some money and take fewer trips that you're prepared for financially then to take a lot of.

Francine Falk-Allen: A lot of TRIPS where you have not been accommodated where you know you have to end up walking too far and that sort of thing.

NORMA STANLEY: And that's one of the things I really want to go to Italy.

NORMA STANLEY: And I wouldn't want to take my daughter, I want to go, you know, and those are such the Old Cities and they can't accommodate her wheelchair, you know a lot of those places have a lot of these every narrow streets and.

NORMA STANLEY: cobblestone streets and lot of steps to see things, and so I had to do some research before I take a trip the trip but i'm sure there's some ways to do it, we can do, I just haven't had a chance to do the research that is definitely in the plans are.

Francine Falk-Allen: A lot of European cities, although they have cobblestones they do have sidewalks that are pretty smooth and I think that that evolved, because women wear high heels and.

Francine Falk-Allen: those cobblestones are hard to walk on with high heels although in a lot of places you go you see that they're wearing thicker heels, and you know, like anyway, you know thick soled shoes rather.

Francine Falk-Allen: than spike heels, and that sort of thing but um, but I think also it's helpful to have a scooter or a power chair, because.

NORMA STANLEY: A lot of times they can go.

Francine Falk-Allen: Over something bumpier than then it a hand push wheelchair, so that all those things to consider you can often rent a scooter at some of these places, if the person is able to use one.

NORMA STANLEY: That's a child where my daughter is.

NORMA STANLEY: not intellectually capable of doing those things.

Francine Falk-Allen: yes I understand.

NORMA STANLEY: So that's my challenge, but you know we're going to work around that i'm going to Italy. But tell us.

NORMA STANLEY: A little bit about you know.

NORMA STANLEY: Through this process for the child to and adult and dealing with going through now I mean just as you as an advocate and as just one somebody wants to share information.

NORMA STANLEY: Are you comfortable with the changes that are being made because of accessibility in terms of the ADA and in terms of things that you've seen in the course of your your life as a person who grew up with a disability and and would you like to see change that has not happened yet.

Francine Falk-Allen: I really appreciate the Ada.

Francine Falk-Allen: And it has been great to have ramps, even though i'm not in a wheelchair now I use the scooter and I often use those ramps but even as a person who needed to use a cane or crutches.

Francine Falk-Allen: ramps were really great because stairs have always been difficult for me with one leg that's pretty much paralyzed it's difficult to climb stairs.

Francine Falk-Allen: I used to be able to do the more easily now they're you know really more challenging even a high curve is challenging for me, so I really appreciate the ramps the thing I don't appreciate is the little bumps on the ramps, because I.

Francine Falk-Allen: trip over them and and most people who have disabilities are actually not in wheelchairs and so they are a trip hazard and I feel like that wasn't thought out very well one thing's thing that we've been addressing i'm on the.

Francine Falk-Allen: Accessibility Community for the city of San Raphael actually i'm an alternate member, but I always go to the meetings and we've been talking about how contractors tend to think of some is good more is better.

Francine Falk-Allen: So it's great that the bumps keep wheelchairs from going out into the street, especially if you're a blind person in a wheelchair.

Francine Falk-Allen: But um contractors often put them over huge expanses of driveway when they aren't necessary in the aren't required, but they think well i'll just do the whole thing, because then.

Francine Falk-Allen: i'll be sure and cover it and I don't know for sure what all the requirements are so i'll just put in more than what it calls for so we've been.

Francine Falk-Allen: Looking at a program to educate contractors another thing that we noticed is that when when they put a disability restroom in to.

Francine Falk-Allen: A facility a building or whatever, a lot of times they put the coat hanger up too high to reach it when you're in a wheelchair so that was another thing that we felt that they needed to be educated about that it's crazy to have.

Francine Falk-Allen: A wheelchair wheelchair accessible stall, and then the person can't reach the place to put their coat or their purse or whatever.

NORMA STANLEY: And they also be to when they do at the airports need to put an in restrooms if at all possible, which I don't know but definitely at the airports places where you know, those of us who have children who may not be baby.

NORMA STANLEY: children with disabilities, so that we don't have to put them on the floor and change them.

Francine Falk-Allen: Oh yes.

NORMA STANLEY: That's a situation that people tend not to think about you have to change this child, not a baby in your arms if she's a child or he's a child they need to be changed.

NORMA STANLEY: because they can't use the restroom by themselves.

Francine Falk-Allen: Yes.

NORMA STANLEY: and you have to put them on the floor.

Francine Falk-Allen: yeah oh that's terrible.

NORMA STANLEY: that's, what are the things that we face that people tend not to talk about but it's a situation.

Francine Falk-Allen: Sure

NORMA STANLEY: And so, I have some colleagues who are advocating for some changes at the airports, and you know these restroom airports, you know i'm assuming at airports, but hopefully we can see restrooms in a lot of places, but these airports, because when you get off a plane generally, you have to go.

Francine Falk-Allen: Actually, and i've seen changing tables inside a large disability stall from time to time but it's rare and I didn't actually realize that that was a problem that's something I wouldn't have thought of either.

NORMA STANLEY: yeah yeah so I mean what would you like to share with our listening audience about your book about the things that you have coming up just to know and how people can reach you if they have any information and any questions about learning more, about you and the work that you do.

Francine Falk-Allen: Well um I do have a section in the book that lists ten, ten tips for leading a healthy life and they're really obvious things like don't smoke cigarettes and eat a healthy diet and get a little exercise if you can be sure to.

Francine Falk-Allen: keep a social network and relax there are a lot of things like that, but it's all in one place that's the thing I like about it it's all in one place and it's just reminders and.

Francine Falk-Allen: Another thing that I talked about in the book is that it's really important to ask people what they need and.

Francine Falk-Allen: offer if you can, if you have time to offer your assistance to people that need help in your life but it's also important to keep your own life in balance and not over commit yourself, you know.

NORMA STANLEY: Absolutely.

Francine Falk-Allen: Particularly aging parents that's mostly moms because women tend to live longer, they need to know when you're coming and.

Francine Falk-Allen: it's good to have like a calendar on the wall, or something so that they know you're going to be there, Wednesday night at 630.

Francine Falk-Allen: And they don't have to worry about it because they're not necessarily going to remember, if you say well i'm coming back in a couple of days, you know that sort of thing.

Francine Falk-Allen: And it's really important to ask what the person needs, I know that that occasionally when i've been trying to get through a door with my crutches and my computer case i've had someone say you should have asked for help.

Francine Falk-Allen: And that's that's really not helpful if you just want to open the door and say here i'll get this for you, then it doesn't blame the person.

Francine Falk-Allen: We have to ask for help a lot, so we tend to save up our asks for things that we really need a lot because it's hard to keep asking and asking and asking so offering help is is really helpful but but.

Francine Falk-Allen: You know, not to the point where you detriment, you know the point of detriment, for your own life, you have to take care of yourself too.

NORMA STANLEY: I absolutely agree and as a mother of an adult daughter, like you say, we don't like asking we just do you have to do.

NORMA STANLEY: And you know, hopefully somebody will offer, but we don't sit there and wait, I was like we do we have to do and just keep it moving, but so How can people reach you and get more information about your books and products and things like that they can maybe go.

Francine Falk-Allen: Well there's two places to reach me one is at my website, which is Francine Falk dash Allen dot com and that's F-r-a-n-c-i-n-e.

Francine Falk-Allen: F-a-l-k dash A-l-l-e-n dot com and the other is on Facebook Francine Falk Allen author i'm there I'm in both places.

NORMA STANLEY: awesome awesome well Thank you so much we're at the end of the show, and I thank you so much for being a part of disabled lives matter today and you know, on behalf of nadine vogel my co host.

NORMA STANLEY: You know, she would have loved to have met you i'm sorry she's not she said she couldn't be here, but thank you for being a part of our show today and we look forward to having you back.

Francine Falk-Allen: Thank you norma it's been really fun talking to you it's great to meet you.

NORMA STANLEY: You too, you too, but we're talking again soon.

Francine Falk-Allen: Okay.

NORMA STANLEY: Have a blessed day.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Disabled Lives Matter Season 1, Episode 25 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Gary Norman

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley… yay!

Nadine Vogel: Hello everyone, this is nadine vogel your co host of the podcast disabled lives matter I joined by my fabulous co host norma stanley.

NORMA STANLEY: Greetings everybody, how you doing.

Nadine Vogel: Good so norma This is just going to be another interview to show why disabled lives matter and it is about a movement, not just a podcast.

NORMA STANLEY: Absolutely awesome movement.

Nadine Vogel: yeah so today we're really excited we are joined by Gary Norman who's an attorney he is someone with a disability and I just you know I just found his journey.

Nadine Vogel: and his experience is really, really interesting and really illustrates why we say disabled lives matters so welcome welcome welcome Mr Norman.

Gary Norman: Thank you so much, this is my pleasure to be with you, I hope, certainly my life has mattered I think it's important.

Gary Norman: In the history of men and women that we make an impact before we leave this great plane and, hopefully, some of my journey will show that i've done that, and hopefully maybe share some wisdom too.

Nadine Vogel: Well, that would be great so Gary tell us about your personal journey with disability let's start there.

Gary Norman: So it has been a long one i'm a person who was visually impaired and now I will place myself in the blindness camp, I have a rare genetic eye disorder called retinitis pigmentosa.

Gary Norman: Sometimes it impacts people much older in life, but, for me, for better or for worse, I was diagnosed with rp when I was 10 years old.

Gary Norman: In a similar fashion, my brother was diagnosed because he's nine years older than me as he was a teenager at about 19 so i've lived with visual impairment blindness, for some time now.

Gary Norman: And all the things that are good and perhaps negative about that journey.

Gary Norman: And then certainly More specifically, I started off for losing my night vision and about the fifth grade I lost my peripheral vision and about the seventh grade.

Gary Norman: And then I would say that I kind of pretend pretend that I could see print, but I really lost my ability to read standard print about the ninth grade and so everything in between it's been quite an adventure.

Nadine Vogel: Well, it sounds like it um and you know why it's it's amazing to me how individuals like yourself with disabilities.

Nadine Vogel: You know, can take such a positive and proactive view on life and business and yet others who don't have disabilities don't get it right, they just don't understand it, for some reason.

Nadine Vogel: My understanding is that you also have credentials in journalism and publishing.

Gary Norman: yeah no yeah for sure we're we're trying to be diverse in our career path, I think.

Gary Norman: Some people disagree with me some people I think perhaps say that as a disabled professional you need to specialize and I think that's a legitimate point of view, but from my own personal point of view.

Gary Norman: I really think it's important, at least in my sense of the great history of lawyers that we kind of have a lot of diversity and a lot of.

Gary Norman: irons in the fire so journalism is one thing that i've really been kind of working on lately, I have a column in our legal newspaper in Maryland and then i'm also a newly minted.

Gary Norman: feature contributing author at government loop, which is kind of a online leadership platform for young leaders and public service.

Nadine Vogel: that's great, and I think my understanding is that with your column in the Maryland daily record you focus on policy and how to influence policy as a lawyer, with a guide dog Is that correct.

Gary Norman: That is correct, so I think this journey with guide dogs, which has been since 2001 when I first obtained my first dog Langer.

Gary Norman: has been this really rich one that's not only taught me a lot, but I think gives me a lot to share with the public.

Gary Norman: So both my my formal writing or more legalistic writing even in kind of a newspaper context.

Gary Norman: or even my new kind of like leadership writing with government loop really focuses on this idea of my journey with a disability, as a dog handler and I think that's just so more unique than using a cane.

Gary Norman: In some ways and depending on the context really either talking about public policy us with the maryland daily record and and how i'm influencing that, as a lawyer, with a disability.

Gary Norman: Or the context of government loop trying to share sort of my wisdom as an employee or leader, with a disability, and what that means, to have an active or meaningful career in spite of perhaps barriers or accommodations issues.

Nadine Vogel: yeah no absolutely and and I also understand that you're the first Chair with a guide dog at the board of Commissioners So could you tell us a little bit about that experience.

Gary Norman: Sure, so that's been a rich, perhaps even complicated one but it's been one that i've been honored to hold.

Gary Norman: I was appointed under two different governors as a person who promotes nonpartisan service.

Gary Norman: I was first appointed by governor o'malley in Maryland and then more recently reappointed by governor hogan to a new year six year term retroactive to 2017.

Gary Norman: And then, and our board under the statute, we have a specifically designated chair and then as a custom we've created a vice chair, so I served as an associate Commissioner from about 2005 or six until about.

Gary Norman: 2016 and then I was Vice chair from 2016 to 18 and then the board elected me in 2018.

Gary Norman: And since we've really been trying to rebuild the board under my chair in partnership with my really talented Commissioners.

Gary Norman: It will be a limited term I I know there's something about making ourselves obsolete, but I do so, happily, because I believe there's an importance in the change of power.

Gary Norman: And my term will end because of that this December, basically, and then in terms of the disability piece of that I think it's been this.

Gary Norman: This balance between sharing my experience and even trying to educate our staff about disability, because I think frankly they've never seen a chair, with a guide dog.

Gary Norman: In recent history but also really being a fair arbiter and servant of all the people have of just a whole range of different kinds of issues that we cover and try to protect against in terms of antidiscrimination so everything from L-G-B-T-Q, plus too.

Gary Norman: Basic kind of like what we call commercial discrimination or sort of like issues around contractors and then really trying to be a visible chair, with a guide dog, which of course means very interesting.

Gary Norman: benefits and challenges of navigating spaces or meeting with people or just them, and having a reaction to me as a blind person and.

Gary Norman: For for it stress or its workload it's been really an honor and a good learning leadership experience for me.

Nadine Vogel: Well, you know it's interesting norma didn't you have like a dog like show up at your House, one day, I think I remember this recently.

NORMA STANLEY: yeah

Nadine Vogel: with Sierra.

Nadine Vogel: was just loving life.

NORMA STANLEY: yeah we have a doberman pinscher puppy to follow me home, one day, a couple weeks ago and i'm hoping we can train her to be a therapy companion.

NORMA STANLEY: But the canine PhD didn't think it would be a good fit so i'm not gonna be able to keep her unfortunately and I i'm kind of sad about this and sierra's gonna be sad about that, it's a beautiful dog.

Nadine Vogel: Any dogs dogs are amazing right.

NORMA STANLEY: oh yeah.

Nadine Vogel: My.daughter my oldest daughter has a service dog for her disabilities, and you know, one of the things i'd love to ask you about.

Gary Norman: Yeah sure

Nadine Vogel: You know, we talk about how we work with our service dogs or guide dogs, but I feel like the dogs have impact on us beyond just what they do right beyond just the tools of daily living that they help with I would love to hear your perspective on that.

Gary Norman: Maybe not everybody thinks this way, but I think the outside world is sentient active world and dogs as part of that are included so.

Gary Norman: While each of my dogs are certainly had the guide dog role, which is.

Gary Norman: One that we can talk about they've been so much more to me each dog has been a chapter of my life and they've influenced each chapter of my life.

Gary Norman: in ways that are beyond just helping to get from here to there so.

Gary Norman: Personally professionally emotionally spiritually and everything that i've learned as i've grown has been because of my partnership with each of these dogs, not only on a.

Gary Norman: level of again getting me from here to an escalator but in terms of.

Gary Norman: learning how to, I think, to be a better human, to be a better leader and also to be perhaps hopefully a better person connected with the outside world and.

Gary Norman: I hope that maybe in these kind of inclusion revolutions we're living through, maybe we're starting to realize that.

Gary Norman: Much more of us are starting to realize that truth that that these dogs these these sentient beings really have such an impactful role on us as humans and.

Gary Norman: Therefore, perhaps, while maybe i'm not necessarily promoting veganism which was certainly something I worked on with the animal law section, but maybe we could all just have a better sensitivity to our outside world and our animal friends

Nadine Vogel: yeah. Absolutely, and I, and I believe you've had you on your third guide dog where you had Mr langer Mr Pilot and currently Mr Bowie.

Gary Norman: Oh that's right yeah langer worked 2001 to 2010 many service animal handlers may not be able to keep their dogs in retirement, but i've been very blessed to keep each one in retirement.

Gary Norman: So as soon as I retired langer I went to school for pilot and California and unfortunately pilot didn't have as long of a career as langer he worked from 2010 to 2017 and unfortunately brother pilot went to the celestial lodge of he fought cancer and soon as he retired.

Gary Norman: We lost him in 2019.

Gary Norman: And then i've been working Bowie since December 2017 i'm at a new school new york's in the New York City area.

NORMA STANLEY: Whats the average time to have a dog, I mean what is the average time to have one. You've had your dogs for quite a long time what's the average amount of time that it tend to be able to stay with. the human.

Gary Norman: um.

Gary Norman: yeah sure so in terms of a guide dog, we like to shoot for seven eight or nine years nine years, perhaps, is a long kind of timeframe.

Gary Norman: With langer he was solid at he was one of my best guidedog workers, of the three he was solid for eight and then I push them a little bit for the ninth because I was in post Grad school and then.

Gary Norman: Pilot just developed unfortunately some anxiety issues and then he started with the cancer problems, so that really did shortness career a little bit.

Nadine Vogel: So how difficult, is it if it's difficult, you know transitioning you develop these amazing you know relationships with these dogs right dependencies many ways on each other and then you have to transition what's the impact of that.

Gary Norman: is really is so profound.

Gary Norman: I thought perhaps it would be easier over time and I think if you talk with different guide dog handlers each transition is unique and.

Gary Norman: Each transition is exciting and happy and really outstanding and yet each transition is often very emotionally taxing.

Gary Norman: and difficult because you're saying goodbye to a partner you've worked with so many different years and that very unique tight relationship.

Gary Norman: So it is a challenging transition it's a difficult one emotionally physically and even physically, I would say, because each dog guides a little different they each.

Gary Norman: kind of have the textbook skills, but how you work with them and how you communicate with them really in my experience varies across dogs what my langer needed.

Gary Norman: was different or would be different than what pilot needed and that has also been true with Bowie.

Gary Norman: What motivated pilot or got him to focus is different than how I work with Boeing now and and in learning that I think that's a huge lesson and leadership and in life in terms of dealing with other people .

Nadine Vogel: right right. And I mean look it's no different than the rest of us right, we all have our own personalities.

Nadine Vogel: You know.

Nadine Vogel: We could have 10 law school graduates, you know they go to the same law school and practice, the same kind of law, but they practice differently.

Gary Norman: I think that's absolutely right.

Nadine Vogel: Though I I see it as that.

Nadine Vogel: So you know i'm just i'm curious and maybe we should you know take go to commercial break in a minute and come back, but one of the things that really like to talk about.

Nadine Vogel: And norma are you and I have had many conversations about this, but it's it's you know, disability, as it relates to this crazy pandemic we've all been going through a covid.

Nadine Vogel: And some of its unique issues, perhaps i'll say for individuals with disabilities.

Nadine Vogel: I suspect that you have some really great information on that and perspective, I know that you've worked a long time on health related disabilities.

Nadine Vogel: Disparities excuse me for people with disabilities and I think that i'd love to hear more about pre covid what your perspective was on that.

Nadine Vogel: And then during covid and post covid that if that if that makes sense, let's go to a short commercial break and when we come back let's attack that so I think there's a lot packed in there, so for our listeners stay tuned we will be right back with you.

Voiceover: And now it's time for a commercial break.

Voiceover: And now back to our show.

Nadine Vogel: Hello Hello everyone and welcome back to today's episode of disabled lives matter norma Stanley my co host and I are interviewing Gary Norman.

Nadine Vogel: And right before we went on commercial break we had asked Gary to start talking about the work that he has focused on for quite some time on health.

Nadine Vogel: related disparities relative to people with disabilities so Gary let's talk about that pre covid what the perspective in the practices and then we'll move into the covid ear.

Gary Norman: So I would say they're mixed in a way that pre covid or pre pandemic health disparities existed for people.

Gary Norman: with disabilities or by people with disabilities and.

Gary Norman: Whether it's because of covid or not, that continue to exist and covid only shed a spotlight on that that data and that issue.

Gary Norman: And maybe it come home to many people who are not perhaps have historically marginalized status so whether that's people of color people disabilities L-G-B-T-Q-plus individuals pre covid, however, specifically and, as now, I worked on health disparities in the.

Gary Norman: sense of being a manager.

Gary Norman: Can you think of federal attorney and healthcare and and also as a senior advisor to you.

Gary Norman: know at the Center on medicine.

Gary Norman: At the Center of medicine and law where I held.

Gary Norman: dialogues.

Gary Norman: and worked to try to bring attention to the issues, specifically.

Gary Norman: People disabilities.

Gary Norman: For a long time, perhaps in public health, there was a sense that disparity still exists, but often or sometimes people disabilities weren't included in that conversation.

Gary Norman: So I think as as we've grown and understanding about disparities, because because of covid we're finally starting to accept that A there are disparities, but people disabilities and B.

Gary Norman: Hopefully, as a society because of the inclusion revolution, we have to address healthcare disparities like we have to address every other umteenth issue that we're doing and grappling with.

Gary Norman: As a society, I think, in a positive way.

Gary Norman: Of course, there are always negatives to anything but largely.

Gary Norman: The inclusion revolution is really spotlighting that maybe we haven't always treated people of color well in our society, maybe we haven't always treating people with disabilities and.

Gary Norman: That that's not the I don't think we should blame anybody for that, but I think we.

Gary Norman: should say.

Gary Norman: This is our past.

Gary Norman: We need to accept our past.

Gary Norman: And we need to come together to address these issues, whether that's disparities in healthcare disparities and a good living for people or any other way that we can make ourselves really truly live our.

Gary Norman: American tenants.

Gary Norman: I have always fretted with being the civil rights chair I deal with what I feel is negative conversation, like the United States is bad.

Gary Norman: And what I say is that this country is incredibly.

Gary Norman: unique and wonderful, but as one of the greatest countries in human history we have even more responsibility to be the leader.

Gary Norman: And to address when we have failed, and we have failed in many ways as Americans in terms of disparities and inequities and now we have a chance that we have learned more that we can do better.

Gary Norman: And I think that's that's why it's been one form of honor to be a civil rights, Chairman and hopefully other God willing, more important more high level positions i'll have in the feature.

Nadine Vogel: So norma you and I have had conversations about these issues. Of implicit and explicit bias.

Nadine Vogel: And you know it doesn't work, does it exist or not exist.

Nadine Vogel: And Gary you know my personal opinion is that you know, there is no such thing as unconscious bias right.

Gary Norman: You know it doesn't mean that people are.

Nadine Vogel: Trying to be mean it's just based on their experiences, but as it relates to health disparities, I do feel like bias kind of somehow feeds this I, what do you think.

Gary Norman: bias for sure or.

Gary Norman: Even bias in terms of people not not being open to educating themselves as they should be it's, not to say that if i'm a nurse right or i'm a nurse practitioner which.

Gary Norman: I have one right now, who, I think, is not as disabilities where's my former primary care Doc is not that they're bad people or even incompetent professionals but I.

Gary Norman: Think incompetent in the sense that.

Gary Norman: Any professional should first do no harm and they should also serve customers and the healthcare system to the best ability possible.

Gary Norman: If that means your patient is green blue or otherwise, then you should really meet that patient where they are unfortunately these disparities grow from the sense that every patient is the same and that's just not true.

Nadine Vogel: Right right and I, and I think that you know and again norma you and I have had these conversations that you know we talked about a equality it doesn't mean we should be treating everyone the same where we need to give everyone the same access.

Nadine Vogel: Right and and. that's what you're saying.

Gary Norman: I think so yeah and.

Gary Norman: I just think also that we really need to work with providers or.

Gary Norman: deliverers of healthcare and really nudge them on this issue because there's a lot of work to do in terms of making health care, accessible, inclusive and usable by people with disabilities and and not in some sort of charity model, but I would. Say for.

Gary Norman: Everybody we're customers doctor or our service delivery provider, where the customers, they need to do a better job of being good customer service oriented practitioners.

Nadine Vogel: Absolutely, and you know it's interesting I I just this week, I had a conversation with a major hospital, I talked to hospitals and med schools and teaching hospitals, all the time.

Nadine Vogel: About allowance from work to come in and train and do some training at the Med school level nursing schools, you know grand rounds anything, and you know it's always I always get met with Oh well, that's yeah that's interesting but.

Nadine Vogel: it's always the but but we don't time but we don't need it, but whatever and it's just very frustrating as as the parent of an adult with daughter with disabilities and norma the same for you, I know.

Nadine Vogel: This is something that's like nails on a chalkboard for us.

Gary Norman: I hear you work I think we're making progress, and I think the health care industry is making progress, but there's there's a lot of work to do, hence why put together a panel that's happening tomorrow on American healthcare lawyers on health care accessibility.

Nadine Vogel: Oh excellent excellent So how do you feel about technology right, it means that you know, especially with covid and everybody, you have these.

Nadine Vogel: You know virtual doctor's visits, all of these things So how do you feel the technology weaves into this do you think it's helpful, do you think it's hurtful relative to these disparities that we're talking about.

Gary Norman: I think technology provides incredible amounts of promise whether that's Tele health or the ability to me with you via zoom platform or any other kind of online platform, perhaps.

Gary Norman: Or whether that is perhaps even conducting mediation online I was just talking with the court system earlier this afternoon about making sure that future online ADR assess is successful, so that.

Gary Norman: Is short there's a lot of promise and a lot opportunity, maybe wasn't present 10 or 15 years ago, on the other hand, with technology or emerging technologies, we also have some.

Gary Norman: Some guardrails and we need to be aware of in terms of whether they were some disparities bias or discrimination so.

Gary Norman: I spoke earlier this year at the International Conference trying to provide the disability lawyer perspective about technology, I would say that i'm a tech optimist, but I also am.

Gary Norman: Someone who you know personally struggles with V-P-Ns every day, I know that technology could also worse in these conditions, so I think machine learning.

Gary Norman: Probably has already done a lot of good for people and could do good, but we need to make sure that we have fair algorithms that they don't worsen discrimination and one example I talked about is is sort of the article I hope to eventually get publishes.

Gary Norman: Working remotely as an attorney really has helped me lessen my stress is saved me a lot of money in terms of transportation costs with lift.

Gary Norman: On the other hand, we are aware that there are instances with employers, which employment by people disabilities never been great, but it can only perhaps worseen potentially because of Ai, we know that.

Gary Norman: There is like is zip recruiter type platforms that's just one that comes to mind where they're using different kinds of Ai technologies and.

Gary Norman: If we're not careful about how we make sure that we include people of color people disabilities as we set up those systems those systems will perhaps exclude more people than the help and I think that will be to the lessening of all of us.

Nadine Vogel: yeah no I agree completely.

Nadine Vogel: Though you know, sometimes on this show not too often, but sometimes we get a little controversial and I know I make Norma nervous.

Gary Norman: Like.

Nadine Vogel: Oh, where are we going where are we going on, but I believe that that Gary you have been a voice for death with dignity legislation in Maryland and and I know that that is an extremely personal and highly controversial topic on anything you could share with us about that.

Gary Norman: yeah, so I think that i've been a voice in that issue in Maryland even nationally now because.

Gary Norman: I see it as a libertarian at heart i'm a centerist libertarian, so I think as much as as I question it for myself.

Gary Norman: I want people have choice, I fear that, with some movements, like the disability rights movement there's kind of.

Gary Norman: You have to think this certain way to it sometimes, and I think that in my observations into general assembly in Maryland has been true of the disability rights community.

Gary Norman: And I also fear as much as is willing to say doctors need to do better, I don't think anybody is our enemy as a movement.

Gary Norman: I think that our powers and the power relationship and partnership, so a lot of the conversation on this issue, unfortunately, to my point of view, has been very negative like doctors are here to harm people with disabilities.

Gary Norman: I think we need more doctors with disabilities or nurses with disabilities, I think perhaps we need more training to the Community.

Gary Norman: Of those who are medical practitioners without disabilities but I don't think any of them mean harm or are our enemy.

Gary Norman: And so i've promoted the concept and testified in favor of legislation or Maryland because hey I just I think it's A personal choice.

Gary Norman: and B I think it has enough safeguards for the most part in the Statute, at least in Maryland to where it should be a choice for people it doesn't mean that.

Gary Norman: i'm i'm not one to force my beliefs on anyone, so I don't think necessarily that what's good for me is good for the two of you, but I definitely think if you to work with people with disabilities, I don't know for sure.

Gary Norman: You should have that choice and that's why I supported it and then, on a personal level, I don't know if this makes my feeling sound inappropriate or trite.

Gary Norman: But having put down two dogs now I don't see why we can be so compassionate and understanding of our animals, and when we can't be equally the same with our loved ones who are facing terminal illness.

Gary Norman: I just I came to came to the issue in that vein, as well as a dog handler who my two guide dog partners have been the best friends in my life and I wouldn't anything.

Gary Norman: For them, then I wouldn't want from my wife for for myself yeah.

Nadine Vogel: yeah no I I yeah I couldn't agree more.

Nadine Vogel: I couldn't agree more.

Nadine Vogel: it's so you know Gary i'm glad you mentioned your wife, I believe that you referred to your marriage as I think i've heard you say a mixed marriage makeup meaning one person is disabled, the other is not so i'd love for you to share a little bit about that if you if you don't mind.

Gary Norman: yeah i'm was incredibly blessed to meet my wife, with my first guide dog langer and then I kind of consider like the three of us got married together.

Gary Norman: Five years of langers career, he was my bachelor kind of dog and then next five years.

Gary Norman: Our partnership and then in four years of retirement, he was kind of our family dog that my wife him and I got married together and then each of my dogs had been close friends of my wife and just really like our kids in a way, and.

Gary Norman: So I am really blessed to be married and in the way up I think of it as sort of a mixed marriage, where I have a disability.

Gary Norman: And she doesn't I think that's positive and negative I think perhaps what I told some kids at college at a speech I gave a couple years ago you can't on we've the threads of your life so.

Gary Norman: What I like maybe not to have my disability, I think, I think, maybe some days, yes, on the other hand, what I'd be.

Gary Norman: As good of a dog handler or I hope a decent husband I don't know, maybe not.

Gary Norman: would life be as interesting or unique I don't know, maybe not.

Gary Norman: On the other hand, my wife has some incredible disability advocates and good human being.

Gary Norman: she's also had to encounter the same issue, as I have from negative attitudes to bias to people glancing at us in a restaurant or at a bistro because wow there's a guide dog and a blind person and how could this sighted person ever like live with a blind person kind of crap.

Gary Norman: out so it's positive and negative, but I think it's a really rich journey, and I hope my wife finds a way to kind of share her her point of view on kind of the the marriage, with a blind guy.

Nadine Vogel: well. you know.

Nadine Vogel: This interview has been so interesting you know, a couple of times you've referred to the state of the state, if you will, as you know, the inclusion, the revolution.

Nadine Vogel: Right yeah and I love that, and you know we're just about out of time, but before we end I would love for you to share with us and our listeners why you refer to it as a revolution.

Gary Norman: So i've heard that term I was fortunate to travel as a foreign policy fellow that's not the exact title but that's a shorter version but.

Gary Norman: The Marshall Fund in 2008 my first guide dog and i've remained active, both in dialogue policy work, even through a mini grants my.

Gary Norman: Partner Boston and I got for a year from them and then, more recently, at a tech inclusion some in December 2020 and I wish I could say I coined that term, but that would be dishonest.

Gary Norman: I was co moderating the workshop on inclusion, to make sure that disability was discussed in many ways, and we had this really unique former fellow like myself, but from New York say we're living in the inclusion revolution.

Gary Norman: And that just resonated with me and it, it still has because I think we've all lived, not only during negative stuff like covid and all these unfortunate people have died because of it, but we've also lived through this revolutionary revolutionary discussion where.

Gary Norman: I think probably my colleagues at the lichen Commission think there's a lot more work to do, but I feel like maybe people of color starting to be recognized in the way that as white Americans we've never really heard them.

Gary Norman: And so I think it's a revolution in that sense.

Gary Norman: More people are feeling like they have a voice and you know for a country that's based on the world to be free that's that's incredibly not only living with our tenants but that's freeing for our fellow citizens.

Nadine Vogel: Right. wow.

NORMA STANLEY: that's it I think it's part of the revolution is that I think people are realizing the actual power and actually tried to use it and, like you said, the greater Community actually hearing what we've been trying to say for so many years, and so that's the blessing and i'm hoping that it.

NORMA STANLEY: And the people disabilities others who have been overlooked and untapped and neglected, this is our time to make some things happen.

Gary Norman: And what's great about this country is that we have a trajectory or more freedoms, but sometimes we don't tap people we haven't always stopped people of color we haven't always tap people with disabilities and.

Gary Norman: Hopefully these kind of movements are teaching us that there are so many more threads to the fabric that that make this rich whole and, ultimately, like benefit economically and emotionally and spiritually and that will only make us a much better country in the end.

Nadine Vogel: At the end of the day, you know, none of us, or just one thing it's about that intersectionality.

Gary Norman: And I think that.

Nadine Vogel: that's what it's about so Gary we are oh my gosh we are so out of time, I feel like we could have talked for at least another half hour, but I want to thank you so much for joining the show and just illustrating once again that disabled lives matter, so thank you for joining us.

Gary Norman: Thank you for having me on the show.

Nadine Vogel: Absolutely. so norma another great show thank.You. For being my amazing co host.

NORMA STANLEY: Thank you for allowing me to do that.

Nadine Vogel: Absolutely, and to our listeners We look forward to seeing you on another episode of disabled lives matter. bye everybody.

Gary Norman: bye bye.

NORMA STANLEY: bye nice to see. you.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Disabled Lives Matter Season 1, Episode 23 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Leslie Lipson

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley… yay!

Nadine Vogel: Well Hello everyone, this is nadine vogel your co host of disabled lives matter, this is a podcast but, along with my co host Norma Stanley Hello norma.

NORMA STANLEY: hey. everybody how are you doing today.

Nadine Vogel: Good. This is more than a podcast right norma this is.

Nadine Vogel: it's a movement

NORMA STANLEY: World changing.

Nadine Vogel: right and today, this movement is going to grow even more, because we are joined by Leslie lipson and Leslie gosh you are an advocate from an educational standpoint legal strategy about legal and education so i'm just telling us a little bit about yourself.

Leslie Lipson (she, her, hers): Sure, and thank you so much norma and nadine for having me today so um I am an attorney and i've been practicing in the field of disability civil rights for around 20 years.

Leslie Lipson (she, her, hers): And i've done lots of different kinds of work but i'm always just continually attracted to working on behalf of kids especially kids whose.

Leslie Lipson (she, her, hers): Whose behavior other people find challenging it's probably my favorite kinda kind of group that really I feel really fierce about that and.

Leslie Lipson (she, her, hers): And about two and a half years ago, so for about 17 years I was with the Georgia advocacy office, which is a statewide nonprofit doing work.

Leslie Lipson (she, her, hers): on behalf of people with disabilities who experienced abuse and neglect and about two and half years ago I went on my own, and I have my own consulting firm and I do work for businesses and nonprofits and mostly about the kids.

Leslie Lipson (she, her, hers): i'm a parent, I have two kids. in Canada.

Nadine Vogel: so i'm curious what got you interested in disability rights, specifically and then even more so for children.

Leslie Lipson (she, her, hers): Well, I think, like most people in this work, I have a personal genesis story I don't think you can really get away from that, but I have hidden disabilities myself and.

Leslie Lipson (she, her, hers): had some pieces as a kid that were really then occasionally as an adult that had been really challenging and I think I thought that disabled people were something different, and somewhere in college and I was a disability student services and I realized that.

Leslie Lipson (she, her, hers): That was me to.

Leslie Lipson (she, her, hers): Re all have different.

Leslie Lipson (she, her, hers): Different parts of our identity for, and then I decided, I wanted to go to law school and I always wanted to do this, I actually interned in law school in this work and my second year law school and so.

Leslie Lipson (she, her, hers): This is just always been my passion.

Nadine Vogel: got it well you know for norma and me we're both special needs moms and so obviously our passion as well i'm i'm curious, I know, one of the things you were involved in was safe schools initiative could you tell us a little bit about what that is.

Leslie Lipson (she, her, hers): Yes, absolutely so in Georgia, up until I guess about.

Leslie Lipson (she, her, hers): me, maybe 25th no 2012

Leslie Lipson (she, her, hers): You could restrain and seclude meaning, you could tie up lock up put in a box put it, a cardboard box plywood box i've seen all these you can use ripcords or handcuffs or anything you want to restrain and seclude any kid at anytime for any reason, and not tell their parents.

Leslie Lipson (she, her, hers): And that was that is still the law of the land.

Leslie Lipson (she, her, hers): federally and many states have no legal protections for students experiencing these what we call restraint and seclusion in public schools.

Nadine Vogel: Oh, my gosh.

Leslie Lipson (she, her, hers): And I was the leader but along with lots of other people, I mean it was a big effort to outlaw the use of seclusion in Georgia and we greatly limited the use of restraint and the research is very clear and it makes sense if someone tried to take you and lock you up in a box.

Leslie Lipson (she, her, hers): You fight them really hard on the way the best way to reduce the use of restraint.

Leslie Lipson (she, her, hers): is to reduce the use of seclusion is to outlaw the use of seclution, but I would really like to see restraint, also outlawed, and so I worked on that for years.

Nadine Vogel: And we are.

Nadine Vogel: On protections well i'm curious because i'm actually appauld.

Nadine Vogel: Generally, this is, this is still Okay, so what is happening on a federal level if anything to outlaw this.

Leslie Lipson (she, her, hers): So there currently is and there has been for several years, a federal.

Leslie Lipson (she, her, hers): package of legislation that I think it's called I have to Google, right now, but I think it's called it starts with the K Okay, I just want to find the acronym but it's to.

Leslie Lipson (she, her, hers): To do the same ideas to outlaw the use of restraint and seclusion across the nation, the idea being if you live one mile to the East, a one mile to the West you shouldn't have the experience of restraint and seclusion and generally if you can't do this in you know.

Leslie Lipson (she, her, hers): that some of these actions are considered by the United Nations to be you know illegal.

Leslie Lipson (she, her, hers): Okay, for some reason.

Leslie Lipson (she, her, hers): against kids with disabilities it's okay.

NORMA STANLEY: definitely needs to change.

NORMA STANLEY: i'm sure.

NORMA STANLEY: i'm sure the parents who encounter situations like that are not too happy.

Leslie Lipson (she, her, hers): No, no, I think we have to remember the real victims are kids.

Leslie Lipson (she, her, hers): Were teaching kids you know it's really amazing that we talked about what do we talk about with kids with disabilities, we say what are what our kids are supposed to keep your hands to your.

Nadine Vogel: self. Right.

Leslie Lipson (she, her, hers): If you're angry what should you use.

Nadine Vogel: Your words.

Leslie Lipson (she, her, hers): Right.

Nadine Vogel: And we went to school, we remember.

Leslie Lipson (she, her, hers): I know i'm enjoying y'all y'all are good y'all are good.

Leslie Lipson (she, her, hers): You can do the presentation.

Leslie Lipson (she, her, hers): So we you know we learned a lot from that.

Nadine Vogel: Right.

Leslie Lipson (she, her, hers): kids are learning. A lot.

Nadine Vogel: i'm shocked to tell you the truth, and I would think this is especially difficult for those students that are on the autism spectrum where behavioral issues, probably come out more.

Nadine Vogel: than most.

Leslie Lipson (she, her, hers): yeah and I think a lot of it is super predictable the kids who are sensory defensive you'll see written in people's IEP when this kids upset do not.

Leslie Lipson (she, her, hers): Because it's very predictable that the kids going to be defensive and it's going to feel like that's a threat.

Leslie Lipson (she, her, hers): then you see people you know who are not looking at that, and then we see school initiate juvenile court charges on kids for behavior That is exactly predictable written verbatim in IEP don't do this.

Nadine Vogel: Right.

Nadine Vogel: right, so if it's in the IEP, this makes this even worse because everybody's supposed to be following the IEP the individualized education plan.

Leslie Lipson (she, her, hers): But if you have you know, unfortunately, in America kids with disabilities, especially kids psychiatric disabilities kids with autism.

Leslie Lipson (she, her, hers): Especially black youth black boys.

Leslie Lipson (she, her, hers): Even kids who are gender diverse or who are LGBTQ on that entire beautiful rainbow.

Leslie Lipson (she, her, hers): kids are perceived to be even more of a threat to go these multiple identities that make.

Leslie Lipson (she, her, hers): Not only are they experiencing really harsh discipline practices um they're expensive experiencing those practices more often and and it's more of them.

Nadine Vogel: RIght. Oh, my gosh well.

NORMA STANLEY: On.

NORMA STANLEY: This has been something that's been going on in you know, in the in the black Community for a long time the whole special education perspective.

NORMA STANLEY: You know when they put the kids in detention or in special programs when they seem to be acting up quote unquote and generally it's because of.

NORMA STANLEY: You know, a special need, if they're on autism spectrum and all these things may not have been diagnosed and they get put into that pipeline of detention and going to jail, of things they don't even realize that they've done and things like that can.

NORMA STANLEY: happen and before you know it lives are ruined and because it's either been undiagnosed or people just don't care and not paying attention to the way they need to be paying attention.

Nadine Vogel: yeah absolutely. well leslie i've heard you said something or you intended to say saying something about you know why is special education.

Nadine Vogel: Not special your education, and you know when I when I first heard that I kind of laughed a little bit, but but it's it's serious, so I wonder if you could explain that a little bit.

Leslie Lipson (she, her, hers): So I don't remember where I read it, and I cannot take credit for it.

Leslie Lipson (she, her, hers): But the special education is often neither special nor education.

Leslie Lipson (she, her, hers): And so, even though the propaganda around special education is it's highly individualized for each kid to get what they need in a therapeutic way you know we know all of this language around it right.

Leslie Lipson (she, her, hers): Well, we know that many things are one size fits none programs that they call it the autism classroom but that doesn't necessarily mean it fits kids needs with autism, one of the problems in America, the way we've structured our education is we've structured it around eligibility.

Leslie Lipson (she, her, hers): And not around services so let's take a service for fun let's take like note taking let's think about all the different.

Leslie Lipson (she, her, hers): types of students that might need note taking right, you might have had a traumatic brain injury or learning disability.

Leslie Lipson (she, her, hers): You might have auditory processing disorder, you might have broken your arm, although you probably wouldn't be eligible for IDA but you get my point, you may have limited mobility they're all of these different areas right that might need a note taker.

Leslie Lipson (she, her, hers): But we make that classification based upon usually eligibility or behavioral support you may have you know kids with OCD coming back after this covid 19 disruption contamination OCD i'm feeling for them.

Nadine Vogel: yeah.

Leslie Lipson (she, her, hers): I really want to.

Nadine Vogel: Talk about that, after as well.

Leslie Lipson (she, her, hers): Right, and so you have like you have like pockets of services like maybe a small groups classroom integrated or.

Leslie Lipson (she, her, hers): Reduced modified homework for kids that have less endurance for homework and that may be kids who have chemo right now, or maybe kids who are just run out after what is necessary at school, but instead we've created these.

Leslie Lipson (she, her, hers): Eligibility and placement our locations totally based upon.

Leslie Lipson (she, her, hers): Disability labels which really isn't smart fiscally isn't smart for human rights perspective isn't smart for our Community definitely isn't a smart smart for our families.

Leslie Lipson (she, her, hers): Your parents kids have disabilities you got your kids in different schools have different schedules and different places, siblings are such a protection for kids okay.

Leslie Lipson (she, her, hers): I have a lot to say about it.

Nadine Vogel: We have to read to go to commercial break, but as soon as we come back norma I think we should really start talking about you know covid and everybody go back to school and what that's gonna look like relative to these topics so listeners don't go anywhere we'll be back in just a minute.

Voiceover: And now it's time for a commercial break.

Voiceover: And now back to our show.

Nadine Vogel: Hello Hello everyone and welcome back to today's episode of disabled lives matter I am joined by my fabulous co host norma Stanley norma.

NORMA STANLEY: How you guys doing.

Nadine Vogel: Good and we in Norma I are just so excited to be speaking with leslie lipson today we're talking about.

Nadine Vogel: The state of the state, relative to children with disabilities in the school system and some of the horrific horrific practices that are still going on.

Nadine Vogel: So so Leslie let me ask you this, I mean so many kids have been out of at a physical school right, you know being homeschooled which we know is just a whole issue right there but.

Nadine Vogel: Some of the things that you're talking about you know how do we successfully reintegrate I guess i'll say children with disabilities back into in person learning and then you know let's talk about what that actually means relative to some of the issues that we've been talking about.

Leslie Lipson (she, her, hers): So it's going to be fascinating you know, seeing what happens because, like.

Leslie Lipson (she, her, hers): You know we're all three parents of kids with disabilities, like, if I had an eight year old kid with a developmental disability and we've all seen the covid health outcomes for.

Leslie Lipson (she, her, hers): kids a developmental disabilities and eight year olds aren't you know vaccinations a personal decision, but there are no eight year olds that are vaccinated.

Leslie Lipson (she, her, hers): They might not be going back in person. I think one thing is that we do still have I actually just looked I know this is a national Program.

Leslie Lipson (she, her, hers): But just looking quickly at my own state this morning 14.7% of kids 12 to 17 are vaccinated in Georgia.

Leslie Lipson (she, her, hers): So that's 14% of kids eligible for vaccination or and not disability specific right, and so, then we're thinking about kids under the age of 12 that aren't vaccinated at all, and we do know the Community spread is very small within public schools we've got very good data on that now.

Leslie Lipson (she, her, hers): But they're you know, in small pockets, so I think what's going to be interesting what we're seeing nationally, is that districts are.

Leslie Lipson (she, her, hers): or States are having cyber schools like instead of like your school like your teacher doing distance learning they're these now kind of.

Leslie Lipson (she, her, hers): Individual schools, who are cyber who are virtual and then your local schools where you would go for face to face instruction.

Leslie Lipson (she, her, hers): So I think it'll be really interesting to see how schools choose to financially and programmatically continue providing some virtual learning opportunities, especially for kids who.

Leslie Lipson (she, her, hers): I think it's pretty arguable, especially if they're immune compromised it's really not safe yet.

Leslie Lipson (she, her, hers): And then I think I may be so interesting nadine and norma to hear like what you did in August to get your now adults, but your kids ready to go back to school every September like what did y'all do.

Nadine Vogel: Oh, my gosh.

Norma.

NORMA STANLEY: It was a big deal, I mean I was getting on the school to school clothes and preparing for that whole thing I mean Sierra is just.

NORMA STANLEY: always have just getting her out of the house anyway, even the same thing getting back in the day program was the same thing, I mean you know she just started back this past week and um you know I want to make sure that everything would be the way it needs to be before I was telling her back and.

Nadine Vogel: and for so many kids you know, unless they're in you know you're around school.

Nadine Vogel: Right so so that now is the education stop for a couple of months, but so typically does therapies occupational physical.

Nadine Vogel: right all of the related services so yes kind of working your way back and getting the brain back functioning again.

Nadine Vogel: And and just you know the schedule right I think that's that adjustment is an adjustment for any child typical children when you add disability to that, depending on the nature and severity of the disability I think it's just another layer

NORMA STANLEY: a whole other layer I know .

NORMA STANLEY: Sierra was glad to see her her her colleagues in the day program she was happy to see them all.

NORMA STANLEY: On but again I was rushing back because I wasn't sure and until they made me sure that it was going to be safe for her she wasn't gonna go back so, but they did what they need to do, and everybody there has been excellent, it is all adults, though, so it's a different thing but.

NORMA STANLEY: You know how can I feel for the parents only because you know especially the younger children but it's a whole nother that's a lot of stress on these parents and.

NORMA STANLEY: those who also need to go back to work um it's a lot of stress and that doesn't help when the school system is doing those kinds of things that you're having to address and try to put a stop to in terms of the abuse.

Nadine Vogel: Right and, leslie, I mean correct me if i'm wrong, but I would think you know when kids, especially if you have developmental disabilities behavioral issues.

Nadine Vogel: You know if they're on a break, so to speak, and then you put them back into a more structured environment I would think some of the the behavioral issues kind of come out at least at the beginning.

Nadine Vogel: And i'm assuming that being away from physical space school for so long, this is only going to really pronounce this even more, I mean is that true.

Leslie Lipson (she, her, hers): I mean we're worried to in the literature like where educational folks leadership is talking about what's going on, I think we're all there's a lot of worry about really increased.

Leslie Lipson (she, her, hers): Harsh discipline policies, I mean you could see like a kid who was in first grade and march of 2020 they're going back a third grader well the behavioral expectations for a first grader third grader they're pretty different.

Leslie Lipson (she, her, hers): Right these kids have really lost, you know we're very focused on academic loss which is kind of interesting because I think what we're really going to see, as people have really lost the context of the role of student.

Leslie Lipson (she, her, hers): So, like packing a school lunch opening it up and eating it changing classes, bringing your books going to sleep on time writing the school bus I got all these pieces to being a student.

Leslie Lipson (she, her, hers): That we really I would encourage parents and teachers for kids, especially with kids have disabilities but really with all kids to focus on the role of student before we're focused on this academic learning loss or missed services.

Leslie Lipson (she, her, hers): As an adult like I kind of relate to it, you know when you first go to work for eight hours a day, I mean you are exhausted.

Leslie Lipson (she, her, hers): Right yeah most of us are starting back you know, they were not five days a week restart back three days a week in the office you know, and these kids in school it's going to be like, here we come in August or September and like here you go five days a week, full days I mean it's.

Nadine Vogel: Right.

Nadine Vogel: they're not easing into it.

Leslie Lipson (she, her, hers): No, but I think parents have suggestions for parents.

Leslie Lipson (she, her, hers): would be definitely working back to that schedule try to get in pre planning get your kid to go visit the school meet their teachers, obviously it depends on your where you are.

Leslie Lipson (she, her, hers): Personally, as a family and where you are your State be comfortable with whatever the distancing or mask measures are some state mandated that some dates dates have not.

Leslie Lipson (she, her, hers): And I think, maybe doing some academic bridge work I think most of the things that we usually do to get our kids ready to go back in the fall would be similar.

Leslie Lipson (she, her, hers): um and I think that the most interesting thing and the I think I think this is fascinating because you've done this for many years, is that, whereas normally the school holds all the information about the kid academically and socially.

Leslie Lipson (she, her, hers): Now the parents hold all the information.

Nadine Vogel: And that is interesting.

Leslie Lipson (she, her, hers): isn't it.

Nadine Vogel: It is.

Leslie Lipson (she, her, hers): doesn't love the performance, who really knows what's.

Leslie Lipson (she, her, hers): going on with that kid.

Nadine Vogel: Well, and that's true it always I always said, the parent is.

Leslie Lipson (she, her, hers): An A-D, but I think a lot of parents who kind of throwing their hands up and said.

Leslie Lipson (she, her, hers): they're special they're educators and I didn't really know how to teach my kid but i've heard from parents who said they told me my kid could never do X, Y or Z.

Leslie Lipson (she, her, hers): And over and over the past 16 months, you know what I can do that they've done it interesting and then I think, on the other side, I think you know, there are a lot of, especially for psychiatric disabilities covid it has not been kind.

Leslie Lipson (she, her, hers): Right, a lot of kids and then we kids with acquire trauma drain this time.

Nadine Vogel: Oh yeah absolutely.

Leslie Lipson (she, her, hers): Post traumatic stress.

Leslie Lipson (she, her, hers): Now we have 600,000 people that died in America there's a lot of grief.

Leslie Lipson (she, her, hers): And then there's been a lot of financial repercussions for families and we've been through.

Leslie Lipson (she, her, hers): You know incredible.

Leslie Lipson (she, her, hers): Time of.

Leslie Lipson (she, her, hers): Protests and attention on.

Leslie Lipson (she, her, hers): on racial terror and injustice and all of these things our kids have experienced since they've been before they've been they haven't been students, so I think we have a we have a lot to come to right.

Nadine Vogel: Well, you know it's interesting because I think he said before I come back you said a child left a first grader now they're back a third grader and behavioral expectations, but I just went through my head was what about the child that left as an elementary school student.

Nadine Vogel: and is now in middle school or junior high school or the left to junior high another in high school.

Nadine Vogel: So a whole nother range of processes, maybe they never changed classes, you know we don't entry school, and now they have to do it so.

Nadine Vogel: I just you know made me think of all of these issues that you know, especially as parents, I always felt like the burden of proof of needed for a child, the burden of just about everything is often on the parent, and I think this is no different.

Leslie Lipson (she, her, hers): you're not feeling like that that is let's not get i'm saying like let's let's honor the experience of what is educational advocacy in America.

Leslie Lipson (she, her, hers): It is 100% people will image kids with disabilities as a burden, I would clearly argue it's not the kids have disabilities is the burden it's the system, yes, that puts all of the all of all of the the pulling all the levers pretty much is on parents.

Leslie Lipson (she, her, hers): Who already are parents, because of disabilities already in a country that's pretty hostile.

Leslie Lipson (she, her, hers): To to family supports.

Leslie Lipson (she, her, hers): yeah in general right so I think that's really true and I appreciate you saying it nadine because I just don't think I can't I read an article yesterday piss me off sorry that's.

Leslie Lipson (she, her, hers): made me so mad that was on parent engagement.

Leslie Lipson (she, her, hers): Okay, like, I mean I was i'm all for parent engagement, but what i've seen in my career.

Leslie Lipson (she, her, hers): is very powerful parents.

Leslie Lipson (she, her, hers): Who can't pull levers, they need to pull, for you know for 1000 reasons.

Leslie Lipson (she, her, hers): That it's not about unfortunately one of the things that binds us together as parents, because of disabilities is it actually does not matter your race or your income listen, some of it helps a lot, but like people can't pull the levers, because the system is so unbalanced.

Nadine Vogel: Right.

NORMA STANLEY: Yes.

Leslie Lipson: What do you think.

Nadine Vogel: yeah I mean certainly the systemic inequalities, and I mean it exists, I always used to feel bad when we would go in and have our IEPs and I have like 20 people there, I had all my peeps you know one to match the school districts.

Nadine Vogel: And I always worried about you know the parents who couldn't attend the IEP because they couldn't get off from work now you have the financial ability to do that or or English is not their first language right, I mean it's.

Leslie Lipson (she, her, hers): Not their language at all.

Nadine Vogel: Right, I mean it's confusing enough for those of us who actually it is you know, and it was always very upsetting to me to see a child who I knew.

Nadine Vogel: Could you know needed just as much, if not more support, as my daughter yet couldn't access what they needed because of that that was really and I think the parents just felt.

Nadine Vogel: an even greater burden because of that, and something that they didn't have control of I mean norma if you had I don't you feel that way.

NORMA STANLEY: Absolutely, and you know because of lack of control, depending on i'm still finding out again about parents who.

NORMA STANLEY: are not getting some of the services they need and they've been here all these years, I mean there's one mother would just call me the help.

NORMA STANLEY: She had a 21 year old I mean you know he's just coming out of the system, but she has not had the help.

NORMA STANLEY: That supposed to be there, she lives in a place where he can't walk he's immobile in terms of physical challenges and another one level to the House to the next, just to put a bed and put him on it and slide him down.

NORMA STANLEY: Imagine, I mean this is a 68 year old woman.

NORMA STANLEY: You know i'm so she's going through all this and it's like i've got to find a way to get into some help so much is still being you know falling through the cracks when all these organizations out there is one of the things that really concerns me.

Nadine Vogel: is not unique just to.

Nadine Vogel: Georgia right.

NORMA STANLEY: I mean no.

Nadine Vogel: this is in all states, but just something I did want to ask relative to Georgia, specifically i've had many parents of kids with disabilities tell me that when it comes to special education or services in the state of Georgia, that it's Atlanta and it's every place else.

Nadine Vogel: That it's very unequal, if you will, even just within the state is that is that true.

NORMA VOGEL: Yes.

Leslie Lipson (she, her, hers): Interesting data on it, depending on what you're after so obviously as norma as nodding school funding is a huge difference and there's actually a lawsuit currently in Georgia is going on for quite some time around funding.

Leslie Lipson (she, her, hers): equalization between rural and urban but that's for sure, an issue now it's interesting like what your goals are so a lot of rural places don't hide away or segregate to the same level of kids with disabilities, because that's pretty expensive.

Nadine Vogel: Interesting.

Leslie Lipson (she, her, hers): so from the fabric sense like who do we go to faith, who do we worship with.

Leslie Lipson (she, her, hers): And who and who do we hang out with on birthday parties and the weekends and who's in my class and who are family, friends you'll see, in a sense of the data says a higher level of social an academic integration.

Leslie Lipson (she, her, hers): and rural America, because they just don't have what we call like a shadow system like separate church services.

Leslie Lipson (she, her, hers): and separate transportation and separate have you know separate social things like they don't have the infrastructure to provide the shadow system that is this segregated world.

Leslie Lipson (she, her, hers): um now for some people, they say, you know I really want all that this you know, bring this to my rural county um we think, as far as the lifetime, you know, having more friends and family and connections, because the unfortunate thing is we're not always going to be around at some point.

Nadine Vogel: right.

Leslie Lipson (she, her, hers): But yes it is Atlanta and outside of Atlanta, especially when you think about psychiatric services, I think there are two or three child psychiatry south of macon.

Leslie Lipson (she, her, hers): A number of play that's mostly like I think one or two about Boston three or four in savannah I mean, so we definitely have and for medical services, you know people got to drive to Atlanta, all the time, you know.

Leslie Lipson (she, her, hers): Norma I feel like I should not be talking y'all should be.

NORMA STANLEY: Talking, no, no.

Nadine Vogel: Listen.

NORMA STANLEY: the whole dental situation.

NORMA STANLEY: I mean people come in Tennessee for to get dental care for their kids with disabilities, because a lot of dentists still don't get it, so this globalization that we all tend to go to and people.

Leslie Lipson (she, her, hers): yeah.

NORMA STANLEY: yeah DVD foundation is where we go.

NORMA STANLEY: select yeah it's a real situation it's a real situation, I mean i'm coming from New York New York actually used to have a really big programs for people with disabilities, I didn't know that when I was living in New York or I would have stayed, but I love living in Atlanta.

NORMA STANLEY: You know until I got here that new york had to do some work too.

NORMA STANLEY: Still it's still.

Nadine Vogel: Live we had lived in Los Angeles, when my.

Nadine Vogel: Older one was was young, and we ended up in a charter school but yeah there were so many issues and we went after the schools, but we moved back east.

Nadine Vogel: We were very specific about where we move, not just the state like we had moved to New Jersey, which county and what part of the county all because of the things you're talking about Leslie.

Leslie Lipson (she, her, hers): Burden that's such a burden, not your kid, but you have to that you have to structure the rest of your life around that and can I tell you about something I read recently that's been cracking me up.

Leslie Lipson (she, her, hers): It said.

Leslie Lipson (she, her, hers): Only in America, do we insure our teeth and our eyes and then the rest of our body separately like who came up with that i've been laughing I mean it really is asinine.

Leslie Lipson (she, her, hers): Like who decided it was teeth eyes and the rest of your body like why isn't it like your left hand.

Leslie Lipson (she, her, hers): Your kidney and the rest of I mean it really is. Okay, sorry.

Leslie Lipson (she, her, hers): you're you're in.

Nadine Vogel: Our society we treat physical health so different than mental health.

Leslie Lipson (she, her, hers): Well, that would be another now let's just be clear we're not insuring psychiatric health but that's.

Nadine Vogel: not really but, again, even the stigma in the schools and how the children are supported or not again, it is very different.

Nadine Vogel: And I find that going to go back to what you said earlier, the burden on the parents, I find that if the child has a behavioral related issue.

Nadine Vogel: Somehow it always ends up being more you know what is the parent not doing right or not doing right to cause that versus a child that has CP OK, we get it.

Leslie Lipson (she, her, hers): Oh no they'll still go after your your your pre you're in utero sorry yeah they'll still go after you so yeah the joke, the joke and it's not funny but the conversation amongst strategy is this first they'll blame the child.

Leslie Lipson (she, her, hers): And then they'll blame the parents yeah very rarely to hear people say what.

Leslie Lipson (she, her, hers): In our instruction is faulty one in our assumptions is faulty what our methodology is faulty what the grouping of kids and the match of the teacher is is problematic.

Leslie Lipson (she, her, hers): But those would be questions that would be running through because you know the faith obligation, the free and appropriate public education obligation does not exist between a parent and the child.

Leslie Lipson (she, her, hers): right and it is not a child's obligation to behave well enough for the school to educate the kid right the faith obligation is between.

Leslie Lipson (she, her, hers): A parent i'm sorry between a school and a student I just spent this morning working actually for Georgia, Casa, who i'm huge fan of and thank Thank God.

Leslie Lipson (she, her, hers): that the obligation is not supposedly legally other you know it is on depending on every single parent, because that would really, really further disadvantaged kids, but we also know it it's just a lot of untruth about it right.

Nadine Vogel: Right right absolutely.

Nadine Vogel: Absolutely well oh my gosh I just I just saw we are out of time.

Nadine Vogel: This flew I I know there's so much more we can talk about but Leslie Thank you so much for joining us today, this is a topic that is so important in.

Nadine Vogel: it's kind of hidden nobody's really talking about it too much, and I know that the the information that you shared while coming from Georgia, I know is very real in most states, if not all states around the country in some way, shape or form, so thank you so much for joining us norma.

Nadine Vogel: Thank you for another great session and for our listeners, thank you for joining us on another episode of disabled lives matter norma take us away.

NORMA STANLEY: You guys it's been a wonderful show be blessed until next time.

Nadine Vogel: Okay bye everybody.

NORMA STANLEY: bye bye.

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Disabled Lives Matter Season 1, Episode 23 Co-Hosts: Nadine Vogel & Norma Stanley Guest: Tawana Williams

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley… yay!

Nadine Vogel: Hello everybody, this is nadine vogel you are your co host of disabled lives matter, this is a podcast but actually it's more than a podcast it's a movement, and I am joined by norma stanley my amazing co host.

NORMA STANLEY: Hello everyone.

Nadine Vogel: hey normal this is going to be a really exciting episode and i'm like totally stoked abouth this.

NORMA STANLEY: Absolutely absolutely I mean this lady is amazing, and I am a big fan.

Nadine Vogel: Absolutely, so this amazing woman that we're kind of hinting about is to Tawana Williams.

Nadine Vogel: Tawana is known as the hope coach she's an award winning keynote motivational speaker a TV personality businesswoman humanitarian former talk show host.

Nadine Vogel: She's coming out with a movie I don't think anything is woman can't do on and, interestingly enough, Tawana was born without arms and parodies of her legs, which just makes her story that much more amazing so welcome Tawana.

tawana williams: Thank you, thank you ladies, how you doing.

Nadine Vogel: Good good better that we're on with you right now.

tawana williams: awesome awesome we're super excited about today, and you know, giving hope and letting people know that it's possible.

tawana williams: I i'm the hope coach tawana Williams your messenger of hope, help and inspiration.

tawana williams: And I was blessed to be born without arms and impaired use of my legs due to the drug the thalidomide that was given to my mother during pregnancy.

tawana williams: Then, my mother told me there was nothing that I could not do, and I believed her yes, I did, and I had a grandma Rogers that did not play with me and I was a little girl, I was four and a half years old.

tawana williams: One day she looked me in the eyes and she said T, you must not have needed arms because God didn't give them to you, she said nothing's missing if you don't have it.

tawana williams: Then you don't need it and those words continue to resonate throughout my soul, you know i've overcome some major adversities and challenges.

tawana williams: Throughout my life I was gang raped during a home invasion raped my my stepfather I was addicted to crack and cocaine for 10 long years.

tawana williams: i've experienced abortion motherhood a stroke and a mild heart attack, so I know that i'm here to give hope and to help you overcome whatever adversities and challenges, you may be facing in your life and that's why I am unarmed but dangerous and an eagle without wings. woo-hoo.

Nadine Vogel: i'm exhausted right.

Norma Stanley: Wow.

Nadine Vogel: let's let's let's start with where you just ended right unarmed but dangerous, you have a book that you titled on unarmed but dangerous so talk to us a little bit about that.

tawana williams: yeah I title my book unarmed but dangerous the Tawana Williams story of relentless struggle and ultimate victory.

tawana williams: I titled it that way, because that's who I am you know the title is not about me not having arms it's about me using what I have you know it's not physical, this is a mental mindset that I have adopted.

tawana williams: long time ago that told me that I could do anything but fail I have that can do attitude, and you know that.

tawana williams: That self driven determination that's who I am and you know i'm so so when other people say I can't I let them know, let me show you how to figure it out.

tawana williams: You know I I've learned, you know that that.

tawana williams: That power, you know that power of being unarmed but dangerous because I realized that the title sounded like a weapon, but you know you don't need a weapon a gun.

tawana williams: Or you know your gun is your mind your skills your knowledge your abilities to soar like an eagle and so that's why I titled my book unarmed but dangerous because that's Who am I never stop.

Nadine Vogel: You know, norma, you and I talk all the time about mindset.

Nadine Vogel: Right, and you know and i'm so glad you said you did tawana, because you know all the time when we talk with people when they have physical disabilities, they say that but it's not physical it's about our mindset and knowing what we can do not, not even in spite it, but because of.

Nadine Vogel: Anything that's that's what you've done.

Nadine Vogel: experienced such adversity, more than any one person or a group of people.

Nadine Vogel: In a lifetime so talk to us a little bit about you know how you got from there to here right obviously there were times that were really difficult for you right and challenges so talk to us a little bit about that.

tawana williams: yeah you know it was hard challenges were hard for me, but that's my strength challenges came to make me strong I realized that over the years.

tawana williams: You know, every time I fell down I got up again and again and again, and you know growing up people would tell me you can't do this and you can't do that and not.

tawana williams: The next time they saw me I was doing what they said, I could not do because of the challenges, because of the mindset because of what my grandma Rogers.

tawana williams: told me and instilled in me as a child, you know my mom you know it was you know it was tough, especially as a child.

tawana williams: You know, I was picked on laughed at talked about mistreated ridiculed humiliated on a daily basis, sometimes until I realized that I had the power.

tawana williams: And the possession, you know what i'm saying, I had the power to win I had the power to soar, and so I just realized that i'm.

tawana williams: I could do this that I was fearfully and wonderfully made by God, just like everybody else, and so I just started moving on what I knew that I could actually do and it started working.

NORMA STANLEY: and

NORMA STANLEY: That is important when you realize your power, how did you turn that into your purpose, how did you go and make it something that other people could adopt and and learn how to fly themselves whatever challenges they were going through.

tawana williams: I made some significant changes into my life for my life, you know.

tawana williams: I started changing my mindset number one you know I started telling myself that I could do it, you know I had to give myself permission to get it done and I did it, you know with you know the possibilities of soaring.

tawana williams: I started talking to myself really and changing my thinking about who I was and what people said I was you know I had to change that thinking.

tawana williams: And then you know, the second change that I had to make was I had to change the company I kept because you know as a child as a teenager that's when.

tawana williams: It was tough for me peer pressure was hard for me, because I was a follower straight up I followed you say, I love you tawana.

tawana williams: I was a follower you know and so that's what how I got caught up in the drug addiction, you know I went to a party, I thought it was a.

tawana williams: dance party, it was a drug party and I didn't know it, it was a crack party and when I walk when I walked in my friend, put the crack pipe to my mouth and said pull on it Tawana and I did it and it.

tawana williams: consumed my life for 10 long years, and so what i'm really saying i'm change is what happened, for me, you know when I realized that I was bigger than crack that I was better than crack you know when my husband.

tawana williams: started praying for me and my grandma Roger started praying for me that's when change came into my life, and then the third significant change that I had to make was I had to change.

tawana williams: The way I saw myself because growing up everybody used to tell me oh you look funny or you're too short, you walk funny use it's weird not having arms yada yada yada and one day I was like.

tawana williams: Stop you know stop that mess, and so I started like I said I started realizing that I was fearfully and wonderfully made and created by God for good purpose, for you know for for the world, you know, and I realized.

tawana williams: That I could do anything but fail and then my husband told me years ago.

tawana williams: In 1996 as a matter of fact, because that's when I started speaking when my mindset really when things shifted in my life my husband toby and I had a conversation, he was like T.

tawana williams: You know, I was having a bad day that day I was having a pity party and he was like T, he said, wait a minute, he said, you weren't born this way for me.

tawana williams: me and our family, you were born this way to help other people, you know, because most people live defeated lives when they don't have to, and here you are without arms doing everything with your feet.

tawana williams: Changing lives getting hope showing people as possible, he said don't do it, and I did it I tried, what do you suggest it and it work so here, I am the hope coach giving hope this is our 26 year and i'm super excited about where I am in my wife.

Nadine Vogel: We know you I mean well, I was gonna say you know what you said was so important, we said so many.

Nadine Vogel: important things, you know that stood out for me about giving yourself permission yeah because we don't we don't do that you know.

Nadine Vogel: You really don't we never gives ourselves permission, whether it's to just take a break or do something for ourselves, whatever it is.

Nadine Vogel: And the other thing that I thought was really important was you know, change the company you keep because they say that you know we become the people we hang with.

Nadine Vogel: Right, so we, but you know, sometimes you get so deep into it it's hard to dig yourself out it's hard to see the end so so one of my questions is you know, have you had help along the way, who were your personal coaches your personal heroes that helped you dig your way out.

tawana williams: Absolutely i've got many of course my grandma Roger she passed away in 1999 however prior to her death, she was that foce that girl that.

tawana williams: Then that fierce woman in my ear That said, you can do it go do it, you know, and my husband toby who is by loudest cheerleader my biggest fan my pusher man, and you know and i'm a les brown platinum speaker so les brown he's one of my personal friends and mentors you know.

tawana williams: Dr Joe Dudley Dudley hair products i've got a list of people that are in my ear I have maximum people in my life that have more that do more.

tawana williams: That push me that you know that helped me along the way, and then we've got Dr creflo dollar and pastor Chad Beck and his beautiful wife we've got a lot of people in our lives that.

tawana williams: push us, and when I say us i'm talking about me and my husband toby because we're one but yeah I just do what I do.

tawana williams: Because I know that if i'm supposed to do this, and I have people in my life I surround myself with people who have more and do more, and they pushed me right into my greatness every time.

Nadine Vogel: So you know when we think about this.

Nadine Vogel: I can just imagine like my older daughter she's she's 30 she has disabilities, and you know she gets down on herself, for the way she looks and different things that she thinks she can't do, and so you know i'm just i'm actually i'm thinking of her as you're talking and you know i'm thinking.

Nadine Vogel: Especially when she was younger when she was about 12 she got into this, why me why was I born this way when I have these issues so if you were talking to your younger self right now.

Nadine Vogel: You know, maybe that teenager who's going through so many issues, anyway, what would you say what actual tips, would you give them and say do these three things, but you know I think that's a big deal.

tawana williams: It is well, I think one of the first things that I always say is up to give yourself permission, of course, tell yourself, yes, tell yourself it's possible.

tawana williams: You know and that's what I had to do, personally, years ago, you know even before the speaking i'm a.

tawana williams: lifestyle that i'm in right now, you know I had to tell myself on a daily basis, and then I had to start focusing on the things that I could do the things that I, you know.

tawana williams: I couldn't focus on what I didn't have you know I had to focus on what I had.

tawana williams: And i'm you know my husband gives me great quotes and he gave me a quote about focus, he said, if you're not focusing on what you want.

tawana williams: Then what you don't want will automatically find you and I was like whoa you know that is powerful so focus is the key you got to focus on what you can do focus on what you.

tawana williams: are capable of doing because we're all capable of doing something greater than ourselves, and when I realized that you know what i'm doing, and all of the things that are.

tawana williams: Helping and helping people, it was bigger than me, you know when I realized that you know me being unarmed but dangerous me being an eagle without wings was so much bigger than Tawuana Williams, I said okay I got this you know so so focus is one of the major key keys.

tawana williams: In my life and in other people's lives, you know you gotta.

tawana williams: focus on it, you can either fall or or or focus, you know what i'm saying you got to really focus on what it is you want to do and move on that don't worry about the naysayers the doubters and the haters you have to get in and you know internally.

tawana williams: You know your daughter.

tawana williams: You know, for me, I had to get into myself, you know, looking at myself and saying tawanna you can do anything but fail and I believed that I could and every time I tried to do something that people told me I couldn't do, and once I did it, I was like oh my God. I am da bomb.

tawana williams: So.

Nadine Vogel: on that note, we need to go to a Short commercial.

Nadine Vogel: Commercial with she's the bomb I like.

tawana williams: The bomb.com

Nadine Vogel: So for our listeners stay tuned Norma I will be back with you amazing tawana Williams, in just a moment.

Voiceover: And now it's time for a commercial break.

Voiceover: And now back to our show.

Nadine Vogel: So tawana you know before we went to commercial break what I was hearing a lot of was the self talk right and mantras you know so many so many people.

Nadine Vogel: You know, talk about where they want to go where they want to be what they want to do in life, but they don't really commit to it, the way you do in terms of that that mantra that self talk, can you talk about that a little bit.

Tawana Williams: yeah absolutely i'm totally totally committed to serving others and helping others that's what motivates me, you know.

Tawana Williams: Because I see so many people that are slack that are lazy that complain about everything, and so I realized a long time ago that it was possible for me and if it's possible for me, without arms.

Tawana Williams: it's possible for you, with everything that you have, and one thing I found out, you know is that excuses don't hide.

Tawana Williams: They just reveal.

Tawana Williams: Who you really are and so you know my motto is and always will be, is that excuses or results you can't have both I.

Tawana Williams: Created results throughout my life on every level of my life i'm totally committed i'm sold out 99 and a half won't do anymore, for me, so I just.

Tawana Williams: You know i'm just that girl that just says, you know what i'm gonna do it as I show up early and I stay late to every event, you know and and that's how I have.

Tawana Williams: soared like an eagle you know it doesn't matter what it looks like for me, you know I just make it happen, I make a difference, because I realized that I am the hope coach and people need to see an example of hope and that's who I am.

Nadine Vogel: Okay, so i'm hearing about all this amazing all these amazing things that you've been doing wanna and how you've overcome, but let me ask with all the challenges that you've had in your life is there one or two that just really stand out is the most challenging and, if so, why.

Tawana Williams: yeah i'm my most challenging moment was motherhood, you know, taking care of a baby.

Tawana Williams: You know I came in there, with no instructions nor direction that was my figure it out moment you know and then today my middle name is to figure it out i'm tawana figure it out, William.

Tawana Williams: i'm just saying you know mother, it was hard, it was it was a challenge for me, but I did it, you know, and I would love for you know your your listeners to.

Tawana Williams: check out my YouTube channel unarmed but dangerous so that you can see how I took care of my daughter, with my feet I I put.

Tawana Williams: Her on the floor on a blanket I took care of her I fed her I bathed her I braided her hair, I mean I am the bomb.com i'm just saying I make.

Tawana Williams: It happen, I made a difference in my own life and I did some things that really literally amazed myself.

Tawana Williams: You know, because there are some things that I thought that I could not do, but once I got in that that mode, you know of.

Tawana Williams: figuring it out yeah the sky was the limit, you know I just kept going and I kept doing it and so today i'm a shaker and a mover and.

Tawana Williams: In all areas of my life i'm super i'm super excited but yeah motherhood and taking care of my daughter was.

Tawana Williams: The most one of the most challenging moments in my life and now she's 35 years old, and she has three boys i've got three grandsons and i'm loving life and loving being a momma, so it is awesome whoo.

Nadine Vogel: whoo yeah.

Nadine Vogel: Norma, you and I have talked about you know the challenges stresses, and you know, being a mom to a daughter with disabilities but I gotta tell you after after hearing tawana i'm thinking we got an easy baby, no, no, you know no excuses just resolve and what did you say tawana, you can't have both.

Tawana Williams: that's right.

NORMA STANLEY: And I said I actually love the story in the reality of.

NORMA STANLEY: The love between you and your husband that started when you were children, can you tell us a little bit about how that came about to do, he was your protector when you were younger tell us a little bit about that and I just think it's beautiful thing.

Tawana Williams: yeah my husband toby and I, we met as children, I was six and he was 12 when we met and I went to grandma, Rogers House every summer, because she lived in North Carolina.

Tawana Williams: And I grew up in DC and my mom and me and my three sisters would always go to go, Mr Rogers house for the summer, but I met toby.

Tawana Williams: I was six and he was 12 and the only thing he asked was what happened to your arms I said I was born without 'em, he was like oh Okay, and we just clicked immediately.

Tawana Williams: And he was like my guardian angel over the summer, each year, each summer, he would walk me to the store he would carry me he would be me he was just like a guardian angel over the years, and you know.

Tawana Williams: we've been friends over 50 years now.

Tawana Williams: And we're super excited this year Christmas Christmas Day will be celebrating 30 years of marriage.

Nadine Vogel: They.

Tawana Williams: Were super excited about life and love and our foundation of love and how he protects me and how he takes care of my every need, and I take care of him too so it's just a blessing it's an awesome Union yeah.

Nadine Vogel: wow that is a beautiful story Norma, thank you for bringing that up that's ah does my heart good right.

Nadine Vogel: So, since tawana you know my gosh there's so many other questions, I want to ask you in unarmed but dangerous and in the book.

Nadine Vogel: Is if our listeners, you know are listening to you and hearing about this give them one or two top reasons why they need to go and get that book immediately.

Tawana Williams: so that they can learn some things that they have not learned i'm just saying, and then you know just to see how blessed they really are because you know the story is really not about.

Tawana Williams: me being born without arms it's my life story and, as a matter of fact, you know the book unarmed but dangerous is about to be.

Tawana Williams: turned into a movie my debut movie eagle without wings no excuses, everyone can fly, and so, but unarmed but dangerous is really about you, seeing who you are because I have.

Tawana Williams: Questions at the end of each chapter that will compel you to get out of your heart.

Tawana Williams: You know, out of your head rather and get into your heart and and figure out what it is you want to do and what you're supposed to be doing, because I realized that we all have something great.

Tawana Williams: You know, in our lives, we all have we were born for greatness, and so, if we can figure out what it is we're supposed to do, then Bam you know it'll be history for you, too, so unarmed but dangerous it's a powerful tool to bring.

Tawana Williams: balance into your life and i'm super excited about it.

Nadine Vogel: I like that Bam for the bomb.

Nadine Vogel: So so tell us a little bit what when is the movie coming out how we get to see that.

Tawana Williams: Well, we don't have a projection time as far as a date yet, however, my producers are saying late 2021 will start pre production so we're super.

Tawana Williams: excited and um yeah we're excited about it and they're talking to the likes of netflix right now so we'll see nothing's set in stone, right now, however, we're doing what we're supposed to do and it's a challenge because we're still in the middle of covid.

Tawana Williams: Right, you know so it's a challenge but guess what challenges come to make us strong and so i'm just super excited about where we're going and.

Tawana Williams: All of the things that we're doing and I have two young girls young ladies that are going to portray me in different areas of my life or different.

Tawana Williams: ages in my life, rather, and they were also born without arms and they're going to do their thing they're going to portray me as as young tawana in different.

Tawana Williams: areas and scenarios in the film so it's going to be powerful but um You can check it out at eagle without wings dotcom and you'll be able to see where we are and.

Tawana Williams: I would love for you guys to stay in the loop by texting seven two seven two seven to.

Tawana Williams: team eagle te am EA GL E no spaces again text seven two seven two seven to team eagle team eagle we're super excited and you can stay in the loop and you'll know where we are and where we're going and how things are.

Tawana Williams: Moving forward but we're super excited about eagle without wings the movie, which is based on my book unarmed but dangerous and yeah we're excited.

Nadine Vogel: Well i'm excited as well, so I you know i'm not even sure it's fair to ask this question because you have done and continue to do so much, but i'm going to ask it anyway.

Nadine Vogel: so norma I know you want to ask this as well what's next, what are we doing movies down and what comes through after that.

Tawana Williams: Well what's next i've got a lot of things going on in my life so i'm after the movie i'm going to create.

Tawana Williams: My talk show motivation for the soul.

Tawana Williams: And not only talk show reality show you know I want to be able to show people that what you see on TV that's not my reality my reality is not fighting fussing and in all that foolishness that's not me and so i'm just super excited about that.

Tawana Williams: chapter in my life motivation for the soul reality show and at some point i'm going to create a drug rehabilitation Center in my own community, because when I was a drug addict we had to travel.

Tawana Williams: 100 some miles to get help, and so it was tough, for me, and so I realized that that's another thing that i'm going to do i'm going to create a drug, we have.

Tawana Williams: A drug rehabilitation Center in my hometown which is Wilson North Carolina and i'm super excited about helping others spite their addictions and their challenges and i'm just super excited about you know where i'm going and what God is doing in my life yeah.

Nadine Vogel: I think that's amazing norma I don't know about you, I feel exhausted.

NORMA STANLEY: But again It just shows all that you can accomplish when you put your mind to it and and and give yourself permission to soar and that's what she's done and she's definitely you know excited me about my own potential like hey I haven't done anywhere near.

NORMA STANLEY: I have stuff that's gotta get done.

NORMA STANLEY: Absolutely.

Nadine Vogel: Well, unfortunately, we are out of time for this episode, but Tawuana, this is not the last you're going to hear from us, we definitely need to keep talking.

0 Nadine Vogel: Anything that norma and I can.

00 Nadine Vogel: Do or this podcast for you to help you or our listeners, and what they could do to help you please let us know, because you are just the epitome of this show rate disabled lives matter.

Tawana Williams: wow.

Nadine Vogel: And what you are doing matters to a lot of people, and I am just grateful for you and everything that you've done so thank you for joining us today.

Tawana Williams: Thank you for allowing me to come and just you know I wanted to share also that you know i'm also an artist, I draw with my feet, you know i've got you go to Tawuana Williams dotcom that's t a w a, n a Williams dotcome you'll be able to see my artwork my.

Tawana Williams: other products, and you know see my books on on but dangerous they only everything is exclusively only at Tawaana Williams dotcom, so I am super excited about life, and thank you so much for having me and i'm grateful and humbled to serve Thank you.

Nadine Vogel: Well, thank you and don't forget the bomb.com Norma I going to be looking for.

That.

Tawana Williams: Better know you better know it.

Nadine Vogel: yeah.

Nadine Vogel: so norma another great episode yes.

NORMA STANLEY: Yes, absolutely she's awesome and so many awesome people coming i'm real excited about the next few weeks and all the ones we've done so far.

Nadine Vogel: Absolutely so for norma and myself another episode of disabled lives matter, we look forward to speaking with you next week, on another great episode and remember it's not just a podcast it's a movement bye bye everybody.

NORMA STANLEY: be blessed.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Disabled Lives Matter

Season 1, Episode 22

Co-Hosts: Nadine Vogel & Norma Stanley

Guest: Nic Novicki

Intro: [Music playing in background] Disabled Lives Matter… here we go!

Voiceover: Hello and welcome to this week’s episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley... yay!

Nadine Vogel: Hello everybody, this is Nadine Vogel coming to you with another episode of disabled lives matter podcast joining me is my partner in crime Norma.

NORMA STANLEY: Hi everybody.

Nadine Vogel: And we are joined today by someone I think, Nic, I think you nd I met maybe, four years ago now, five years ago we kind of knew of each other but we met in person, Nic novicki so Nick is a comedian and actor producer, I think you perform now on six seven continents that's right I go yeah you know I think I’m busy until I see what you're doing and then I’m like oh my God I’m exhausted let's just start with if we can talk to us about just life as an artist as a producer with a disability right because that doesn't take away from you being this amazing artist and producer but it adds to it so talk to us about that a little bit.

nic novicki: Yeah, yeah Well, first of all thanks so much for having me on and for those of you that don't know me I’m as you said, an actor comedian and producer. I’m also a little person so I’m three foot 10 and I would say in terms of my career as an artist and producer and having a disability they definitely intersect. But for me it's always about you know the art first you know, creating writing doing the stand-up producing creating my own content. I think part of that you know went side by side because of the fact that I am a little person, I am a person with a disability. So, to you know, have the kind of career, I wanted to have I learned pretty early in my career that I have to be in charge of all aspects learn how to write how to produce how to market how to get myself out there how to connect how to bring people together how to help other people, rather than just ask them for help. So, and then ultimately that's where you end up building a network and then from that network, you get hired but you hire other people, and then it just sort of just all goes you scratch my back I scratch yours, but it's this kind of beautiful community that I’ve you know worked with and I just feel honored to be a part of people with disabilities that are working comedians, singers, producers. You know, a step further, is eight and a half years ago I created the disability film challenge, which is a weekend film competition where you need to have somebody with a disability in front of or behind the camera. In 2017 I partnered with Easter seals southern California, the nation's largest disability services organization. Or now that Easter seals disability film challenge, we've had hundreds of films created from all over the world, so it's kind of another layer to that you know connection with artists with disabilities, because now it's not just me as a working artist with a disability, but I’m also somebody that in many instances ends up referring people and becomes a facilitator that helps others get jobs but.

Nadine Vogel: Well first of all I have to say thank you because the Easter seals disability film challenge is amazing, I have had the opportunity to actually be there in person. I know many of your award winners and oh my gosh I don't know what well, you should be aware of our foundations, Springboard foundation, we had a fundraiser and what we did we worked with a Carl right and what we did was we actually showed award winners from the film challenge.

nic novicki: That was awesome that was so cool.

Nadine Vogel: And it was it was a way for us to introduce your filmmakers your actors to a much, you know casting a much wider net, right, so people know about who they are, I think it's really important because, just how you open Nic I mean it just sounds like as someone with a disability, you have had to work that much harder. Do that much more to just get to that same playing field as others, would you say that's true.

nic novicki: To an extent, you know I think in some senses, as a person with a disability, to be honest, I got in the door really quick. Because I happened to be a little person, when I was you know, only a couple years in the acting I was on the sopranos so that doesn't happen for most people with disabilities. But with that being said I got on sopranos I got to work with all these other people and then all the sudden I was limited with the kind of roles that I was able to get because they were like well you know we have this kind of role for you it's a non-speaking thing and it's bad and I’m like well I’d rather be the romantic lead so I’m gonna write down to produce that and I’m going to be the gangster you know that's what I want to be so. That way, you know, so I think in some senses the doors can actually open up a quicker if you haven't disability. And so, if you're listening in and you're thinking well it's going to be harder for me with a disability, I actually disagree. Because right now I mean, even if you look at the sponsorship that we have for the Easter seals disability functions response by Sony pictures and you know, universal pictures and you know Viacom CBS and all these studios and networks and Warner media and adobe and they're all actively trying to include more people with disability, so I think now is like the best time to get your foot in the door, and I think whether you have a disability or not, or you don't have a disability it's a very difficult industry so you're gonna have to work hard. And you know, depending on what your disability is there may be other things that you're going to have to learn about in terms of what you need for accommodations. How, you know what your talent is honestly, you know as a little person I’m probably not going to be the best key grip and daring like heavy stuff. You know, you got to find your place in the industry and what you're passionate about. And what you are able to do the best and utilize your disability, because I also think is people with disabilities, we’re used to being kind of entrepreneurs in a certain sense. You know as a little person I can never reach things like public restroom sink; I have to move the trash can stand on it. So, the fact that I can do that in real time that's Problem Solving and that's what I needed and most you know TV sets film sets because they usually don't go 100% the way that you plan you know and location it rains. You know somebody gets sick; you know it's a very fluid process. So, if you have that ability to kind of roll with things, and you know you're better off, and so I think as people with disabilities, we bring a lot to productions with having that sort of you know, entrepreneurial spirit, but also just that willingness and experience and adapting.

NORMA STANLEY: Resourcefulness

Nadine Vogel: Yeah, absolutely. Do you think people know that readily though or is that something we have to educate.

nic novicki: You know, I think that people learn it through working you know, it's work gets your work, so a lot of times it's still the process of you know people being exposed to the talent within the disability community and so that's what I’m really proud of you know, we do screenings around the country and workshops and seminars and you know we're able to have not just you know referral but we're able to show films. So we're able to show the people doing the work not talking about what they want to do, but seeing that their work as a writer or their work as an actor and so I think the more that people are familiar with and get to know, then they see that talent and they see that work ethic and yeah that resourcefulness so you know it's a process, and I think the more and more we're able to be in the same room together doing in person workshops, obviously with the last year that's been a little difficult because nobody's been in the same room. At all been you know, in a zoom or you know Microsoft team’s meetup event so.

Nadine Vogel: So, I’m hearing that the doors are open more readily now. Do you think, though, you know, like you said early on about you want to be a romantic lead me like well no that's not the roles here for you. So, while the doors have opened, which is great, we need to start somewhere, do you think it is still limiting in terms of how people in the business view individuals with disabilities, relative to roles, whether in front of the camera or behind the camera.

nic novicki: I think to an extent, but I also kind of think that just in general, you know I know so many up and coming actors comedians writers that don't have disabilities, you know that are from other marginalized communities or just you know view quote unquote the stereotypical you know and it's very difficult, you still have to find your own path to an extent. You know, I think a lot of times people are expecting you know networks and studios and the Academy award winners to kind of be the person that just breaks everybody in when in reality it's you know from my experience it's been people that you're starting out with the end up hiring you, and then they you know you climb the ladder together. But I think sometimes you know the to be able to work with the High-Level Martin Scorsese’s the you know P, you know Farley brothers people that I’ve had the honor of working with. I don't think that would have been a possibility, had I not done a lot of other things, to get started, and so I think, really there was no such thing as the dslr camera or a smartphone when I started, I mean I’m getting old.

Nadine Vogel: You’re getting older to.

nic novicki: 20 years 20 years ago, you know I got started in 2001 you know. Doing stand up and doing things that but literally the technology wasn't there that's before YouTube that's before you know you would have to shoot something and put it on a little tape and then the tape to a competitor.

Nadine Vogel: You know you're a new daughter will never believe that when you tell her.

nic novicki: Yeah, and honestly, by the time she gets to be you know college age there's going to be new stuff that we don't even know about you know technology's always kind of just you know shaping in a way.

NORMA STANLEY:The jetsons you know with the flying cars.

Nadine Vogel: Oh I love that show.

nic novicki: I love the Jetsons. I love it. I mean it feels like we’re there though.

Nadine Vogel: It does. It definitely does and I think that that's important, I think technology is the great equalizer right and but, again, we have to know how to use it. And how to use it for us and not against us. You know we're talking with someone I don’t know if you know John Kemp, you know we were having a conversation with him, you know these companies say that are using technology in a discriminatory away when it comes to talent acquisition right. Using ei to make determinations and that doesn't work well for people with some disability types, so I think technology is fabulous but, again, we do need to know how and where to use it.

nic novicki: And I think even beyond that it's also just a balance of you know not everybody's going to be great at everything I’m not the most technical person I’m better at kind of putting people together, so I think you know it's about you know learning how to kind of build your network, you know and that's the way that somebody's going to be better with certain technology. With interpersonal skills somebody who's going to be smarter or better writer, you know somebody's going to be the comedy person somebody be the straight man person you're like acting you know you got to have Laurel and hardy you know or the Alec.

Nadine Vogel: No, I agree completely, and you know it's interesting because there's so much to think about and so much to consider, and I think you touched on earlier, you know. I’ve talked to people with disabilities to say you know they're tired of always being the ones who must educate and train, and you know tell the companies what to do and how to do it, but at the end of the day, if not us then who. Right and who's going to tell the story correctly right in a way, because I’ve seen many organizations try but not succeed. And sometimes it's just because they haven't really engaged with people with disabilities to really understand exactly what's needed You know.

NORMA STANLEY: It’s the same thing with the African American Community and companies who don't really have like an advertising, and they don't have people making decisions who understand the Community and they're putting out ads that just do not, they don’t connect. They don’t know the messaging because it's not their experience.

Nadine Vogel: Right. Absolutely.

NORMA STANLEY: So those kinds of things you must have the people limiting the lived experiences to talk about it.

Nadine Vogel: Absolutely, and we must go to commercial break when we come back Nic I would love to touch on that this is a big discussion around people who do not have disabilities playing roles of disabled individuals. So, let's go to commercial break, because I know that's a hot topic important one, so I think we should go to commercial break first and we come back let's touch on that, so everybody don't go anywhere we'll be right back.

COMMERICAL BREAK:

Nadine Vogel: Okay, so this is Nadine Vogel back at you with disabled lives matter podcast with my co-host Norma Stanley and today's guest Nick Novicki. So Nic before we went to commercial, I brought up a topic that I know is always controversial but so important to address, which is this issue of individuals who do not have a disability visible or invisible playing roles of disabled individuals. Can you talk to us about that.

nic novicki: Yes, during the whole commercial break I was screaming. So I mean this is it's a controversial topic, but look, you know, for me, as my goal and kind of the mission of what I do with the film challenge and in my work it's about creating solutions for future things. It's about putting the keys in people's hands themselves to tell their own stories so that's generally what I focus more on I focus on you know the bigger problem, which is how do we get more people to be further in their career. You know I think sometimes as a whole, we do focus on that a lot and look, we want an authentic portrayal and that's you know a lot of that too is not just in front of the camera that's behind the camera. And that's about who's telling the story who's writing it who have you consulted with but certainly. You know I always feel personally that the most authentic performance is when you have somebody with that disability portrayed that is that character. But, but again I think sometimes it's interesting that this ends up being in the press a lot, you see a lot of articles and they want to point it we've got to fix this one and it's like one You know film or one TV show when it's like we have all these networks, all these studios all this talent out there, you know I think sometimes that we need to focus on uplifting those that are doing it right. More so than you know attacking those they're doing it wrong. But I don't fault anybody for that frustration, and you know as a consumer myself I would like to see a story of a little person portrayed by somebody there's a little person. You know me, I think you know it's about authenticity, so I think the other kind of problem is, I think now audiences with them with and without disabilities are getting smarter and they're starting to see oh well, I don't know that's just doesn't feel like that's coming from a place of truth or authentic, so I think you know, really that's something to think about. And then, on the other side from our studio network independent film production side you need to think about that huge 61 million Americans that have some form of disability. One in four roughly according to the CDC. And that translates around the world, you know, a huge demographic of people with disabilities. So we haven't been marketed to enough. You know, so I mean, I think you know, think about you know all those attack ads but think about all the uplifting ads and the like, embracing you can get you know, and we've been honored to have gotten you know a lot of press with the film challenge you know, last year, there was a New York Times article that. featured me talked about the challenge Forbes a couple times CNN variety, we’ve been in the Hollywood reporter. You know, during our awareness campaign people have been picked up on, you know people magazine and all these other things, so the community loves embracing these positive stories. But you know if you're thinking about you know hiring somebody that doesn't have a disability and one of these roles. You have to know what you're getting into to that there's going to be people that are not going to be quiet online and it's a hot topic, and you know it stems to from there has been a lack of access, you know, historically, for a lot of people with disabilities and it's not like hey this wheelchair user with cerebral palsy is getting you know 25 auditions a week. So, when a big role comes or for somebody who's blind or deaf or little person or would you name it autism any fill in the blank disability there's a lot of talent out there with disability and I think you know there's more and more opportunities that are coming now where the casting society of America has been unbelievable and supporting the film challenge and the disability community as a whole and they're reaching out on a weekly basis with roles and trying to authentically cast so there's a lot of people doing a lot of great work and I just want to point that out, you know that there's so much collective.

Nadine Vogel: Yeah, I think you're right the negative stuff is what you know sticks and is out there you know, but we do hear things like well you know we need to watch the box office right and the revenue, but you know there could be a major box office hit with an individual with a disability if we give them the chance, so we find out their just as talented as the other lead that you had right. So, it's tough and Norma you know I mean, in some ways, now I’m going to get really controversial, but in some ways, you know think back all those years ago to blackface.

NORMA STANLEY: Exactly I was thinking the same thing you know, and I didn't realize what was really going on. And that was definitely you know not something that we would ever do today or anybody who has any sense would do today and that was something that they thought was somehow appropriate way back then. But again, who are they listening to they weren't listening to anybody who really knew it was inappropriate anywhere.

Nadine Vogel: And now look, I mean look at all the roles, you know award winners, who are from the black and brown Community right but another I you know I seem to be in a controversial mood this afternoon. Another topic I’d love to hear from you on is this issue of movies that has been out where the person with the disability, you know gives up on life. They would rather just you know die and not live, and it is all these questions that come out about quality of life. And I’d love to hear what you think about that, because there was a study just recently, not the entertainment community, but in the medical community. Where doctors admitted that they actually felt that people with disabilities had lesser quality of life and therefore it impacted their diagnoses their recommendations for treatment things like that so I’m just curious from an entertainment industry standpoint, what are your thoughts.

nic novicki: Well, you know I think a lot of times you're hearing stories that were not written by people with disabilities, you know you're not going to hear you know somebody who's a little person talking from that standpoint of I’d like to you know get rid of my child because they're a little person or something so it's like I think a lot of times it's you know it all goes back to authenticity. And yeah, just saying you're going to end your life because of your disability, I mean that's an awful portrayal of somebody with a disability. I think that it's about telling our own stories, you know it all boils down to who's writing this, who's it for. Because generally that's not for the disability community and generally that's not written by the disability Community if you're talking about my life isn't, yeah.

NORMA STANLEY: They both pass the disability Community it's from the perspective of you know, whoever it is this writing it and whoever it is so who's even doing this study in that they're assuming about a community as to what think can’t be any good, because of whatever the situation is. And so, prescribing whatever they're prescribing and diagnose what admitted diagnosing and not giving that community an opportunity to decide for themselves.

Nadine Vogel: And you know, look if someone would ask me, you know 35 years ago, you know if you had a child with a disability, who couldn't do this this this this and this you know what would you do and I’m almost 100% sure that what my answer would have been then not having that experience would have been very different than what it was after my girls were born and what it is today. So Nic I think it goes back to what you were saying about authenticity. And experience right and bringing that to the forefront, and I think that certainly would be Easter seals disability film challenge you've done that. So, my next question and no pressure here. Well maybe some pressure. Where does the film challenge go next right, what's next on the horizon, maybe the next you know, three to five years for the challenge.

nic novicki: Well we've grown every year, so every year we've had more films more partnerships more screenings. We get success stories every week so honestly, it's grown more than when I came up with this idea eight and a half years ago, I never would have thought is going to change people's lives it's people would literally do what they wanted to do. Because of you know, entering this and that they would build lifelong you know mentor ships and get to work with Oscar winners and work multiple years in another country from you know, taking part in the challenge so it's the Community is building. And so, I think you know I'm optimistic that we're going to continue to grow. I’d love to see you know we already have projects that are being turned into feature films and TV shows in development, so I’d love to see one of those you know go full force into in the movie theaters you know into on TV. You know, documentaries are being made from last year's every year to different genre so, which is also kind of cool so it's not the same type of film. The film's change in a different block every year, so last year's documentaries are being turned into features, right now, some of those. Some you know films from five years ago, six years ago, are still in development and really close and people are winning grants and you know getting jobs, so what I’d like to see is the continual growth in that it's you know, creating opportunities for people with disabilities in front of him behind the camera and ultimately building people's networks and giving them a chance to screen to be proud of their art and themselves and also families, people with disabilities have just so much pride. The amount of pride from the communities, you know, we have an awareness campaign where it's a 10 day campaign where people are trying to get as many likes views and shares for their films, but they're bringing in their local network their local news their you know their families work everybody and so they're sharing and getting kicked off of Twitter and Facebook, because you know getting themselves out there, so much so. That’s just continuing to build, and I want to see that you know happened more, but you know even going back to what you were talking about before. You know all this space it's interesting because you know I’ve met you know parents that are you finding out that their child is going to be a little person and they're so scared about certain things where I’m like I don't even think about what you're like concerned about like that you know as a 38-year-old man like. I you know my wife's a little person, you know we don't know if our daughter is a little person or have a type actually because of my kind of dwarfism we won't know for a couple of years, but that's not even something where I’m like scared oh it's you know it's just that a lot of it is to just coming to terms with look it's going to be different, but accepting the situation. Because in reality many times, I think from a medical standpoint and just in general, from societal standpoint people really get nervous and it's just a lot of fear I think that kind of drives why they want to change things I don't want to have this because what will others think or they won't be able to live a normal life when reality is yeah, we will be able to live in normal life and, yes, we're going to do everything. Some things may be done a little differently, but you're still going to be able to you know, do whatever you want to do, including in the arts and so going back to what the film challenge what I hope is over the next three to five years. You know, we continue to see just great stories they've never been seen before, to which is something I’m really proud of with these films. Where we have like love stories of people with down syndrome and you know they never talked about having down syndrome or things that are a part of their downstream from it's just them, you know living their lives or you know, being a gangster being the you know romantic lead yeah just like everybody else, and so that's what I want to see more and more of. And because honestly and I think that's where we're going to see a breakout hit come from, because you know generally TV shows and movies. You know they haven't you haven't seen some of these stores or haven't seen these kinds of portrayals. So, the fact that we can do it and it's all volunteer driven, and you can use Union talent, so we've had Oscar winners take part in the film challenge. I think that we're going to see a real breakout calm and I encourage everybody to go to our YouTube channel and check out all the films, we have hundreds of films, this year we had 93 films shot from all over the world, including India, Australia, the Netherlands, Italy, Ireland UK Canada. You know so it's all kinds of different interpretations. Of what disability is and many times, never addressing disability you're just seeing it. From a different accent or different way of talking or looking.

Nadine Vogel: Well, you know, Nick I always say it's not about what happens in life it's about what to do with it, that the counts and certainly you have done and continue to do amazing things and I just I can't wait for your daughter who was only five weeks old to grow up what an amazing dad she has and all the info that you are doing, I can't wait to see over the next three to five years how the film challenge grows. Because I have watched it and you’re right it's grown tremendously. And you know look you illustrate better than anyone disabled lives matter that's what this is about, first and foremost so Norma I don't have any other things you want to add but.

NORMA STANLEY: One question. Drop that is one of my favorite shows, how did you get to play in that I thought I saw every episode remember I didn't know it was you.

Nic Novicki: Yeah yeah yeah well what was funny was I played like a kid lawyer. So, there was a whole episode about how my mom, it was funny because like this is the how Hollywood works for those of you that don't know, I was almost 30 years old, and I was playing like a kid yeah and they just kind of you know and shaved and I kind of got that kind of face. Without the beard you know if I shaved and. But this is, you know from 10 years ago or. Nine years ago, and so, basically, it was a whole episode, where I think it was called dream big or something I can't remember the name what it was it was it was all about me I kind of be in like a kid lawyer and I was like a teenager. And it was funny because one of the leads, you know we're talking, I was like yeah you know so when I was on the sopranos and they're like the sopranos how old, are you waiting to you're supposed to be like a teenager that's been off for six years.

NORMA STANLEY: Yeah, yeah, no doubt. I’ll have to go back and check that episode out.

nic novicki: Yeah yeah it was it was such a fun show to work on and josh Berman, the creator of that show he's just an unbelievable guy and really kind of created an awesome role for me and he's been supportive beyond drop dead diva he's you know, creating and working on all these other awesome shows.

Nadine Vogel: Great well this was just so amazing Nic Thank you so much for your time today and for our listeners, I know you have enjoyed this as much as Norma and I did we have big smiles on our faces although you can’t see us.

nic novicki: If you guys want to know more about what I’m doing follow me online at Nic novicki you could go at this ability film challenge or disability, some challenge COM to learn more about some of our upcoming screenings workshops, seminars.

Nadine Vogel: Excellent and, yes, you all should follow him for sure. So, with that this is Nadine Vogel another successful episode of disabled lives matter Norma Stanley my co-host.

NORMA STANLEY: Another great show.

Nadine Vogel: And Nic Novicki again Nic thank you so much, we will definitely want to have you back and hear what you're doing.

nic novicki: Arlight well, thanks so much for having me.

Nadine Vogel: Thanks, bye-bye.

NORMA STANLEY: Be blessed everybody.

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Disabled Lives Matter

Season 1, Episode 21

Co-Hosts: Nadine Vogel & Norma Stanley

Guest: Jane Fernandez

Intro: [Music playing in background] Disabled Lives Matter… here we go!

Voiceover: Hello and welcome to this week’s episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley... yay!

Nadine Vogel: Hi I’m Nadine Vogel and I want to welcome you to today's podcast of disabled lives matter, this is not just a podcast, this is a movement and joining me in this incredible movement is my co-host, Norma Stanley.

NORMA STANLEY: Hi everybody.

Nadine Vogel: Hey Norma how are you.

NORMA STANLEY: I’m doing great how are you guys doing today.

Nadine Vogel: We are good, I am really, good because I get to join you in interviewing an old friend of mine Jane Fernandez. So, Jane is the President of Guilford college and she's the ninth President and the first deaf woman to lead an American college or university, so she totally exemplifies this issue of disabled lives matter so Jane welcome to the show.

Jane Fernandes: Thank you I’m excited to be here, look forward to talking with you.

Nadine Vogel: Absolutely, so tell us, I mean my gosh obviously there's a lot of history between you know you growing up going to college and becoming a college President. So, talk to us a little bit about that path that journey.

Jane Fernandes: Well, I grew up as a deaf child, and I was fortunate because I had a deaf mother who already know how to work with a deaf baby or to tell yourself that was a benefit that helped, I was very much many streamed into this world not aware of deaf world I’ve been painting my family.

Nadine Vogel: Got it.

Jane Fernandes: Went to public schools and I had support at home to really teach and really learn what's going on in school. So, I committed a lot of my time to learn how to speak read and write English. Large amount of time. And eventually, it did come to fruition. I always liked public school. I did I did fairly well, I have some interesting stories I could tell you about my school. Before I go into my career.

NORMA STANLEY: Let's hear it.

Jane Fernandes: Okay well I have a couple of stories. They show things about how the worlds not really made for deaf people. And we are always negotiatinh with the hearing world about who we are and what we're capable of.

NORMA STANLEY: Yes.

Jane Fernandes: The world sometimes put assumptions on us and generally those assumptions hold us to a lower expectation, my feeling.

Nadine Vogel: Yeah, I agree.

Jane Fernandes: They have limits. With something like speed limits. Speed limits try to have a strike safely you must slow down and follow us on that journey keeps us safe, those are good ones. But I feel that the world has put a lot of these limits on me as a deaf person on deaf people in general where they underestimate what it means to be done. So anyway, for example, I went to kindergarten in a public school near my home. I’d rather from walk to school. I was excited because I’ve never saw so many kids before. They went into the class and a few days in I got excited because we all got pencils and we were practicing handwriting. They were thick pencils we used those a long time ago. And then I saw oh they have a pencil sharpener over there on the wall and I saw people go over there, so oh so I don't know what one point in the day, I decided I’m going to go over there now, I want to sharpen my pencil. And when I turned around everyone in the class was laughing. Maybe I don't know, maybe they were just laughing but I felt like they were making fun of me I didn’t know what's going on, and I saw the teacher was stern, sit down. And I got so overwhelmed I don't know what happened exactly so that I decided to bolt I left I ran out of the class I ran out of the school, I ran home. I was crying because I didn't know what I did wrong. Everyone else sharpened the pencil but I went at the wrong time, or something. My mother, she had to calm me down and later she walked me back to school and she made it clear that that was my school. Even though it didn't feel like it was my school she told me this is your school, and you have to make it your school. In her mind you know, she knew other children all went to deaf schools separate schools for deaf students, which are fine they're good but for a decision for me, was to go to a public school right. And that had to be mine but then after that my mother got more involved in school so she helped the school understand somethings about how to do better with someone like me.

Nadine Vogel: Right, well she wanted you to focus on the hearing world, more so than the deaf world, correct.

Jane Fernandes: She did yes. I’ll talk more about that. But yes she did.

Nadine Vogel: Oh okay.

Jane Fernandes: Yes, she wanted us to focus on the hearing world. So another example, just because you brought that up. When it's short time later, maybe one or two years later we practiced different things about how to do things in the world. So she sent me to a local drugstore. I could walk home. She gave me money and she told me what to buy, I forgot. But the goal was that I would go in and buy it get the change and come home and then no one would know I was deaf. So she taught me more to do have act, I went in the store, which person in the store by the way they look for how about you most likely to help me. And which probably wouldn’t. Okay, so anyway, I did I went, and I bought the thing I got the change I got the bag and I walked home crowd around them didn't know. But so, my mother was helping. But when I look back on it now, I wonder what was in my mind that I was happy to be something, or I appeared to be something that I wasn't. And I felt proud to be hearing or act as if I’m hearing and not so proud to be deaf. I had to hide the cover. But yes, my mother did want me to know about the hearing world she did and I'm not sorry about that. Okay I’m glad I did that, at the same time, I have a lot to do, on the other side when I realized what I had missed, and what I never knew about deaf people. That was a big loss, I had to make up, but one thing I will say in my high school in Worcester mass door high school. I went to highschool and I had some close friends. Not huge number but some close ones, and again mostly succeeded if I didn't really make everyone, I can hear you I don't know what you're sad or just go along keep everything. But one time, one of my friends was an African American girl. I’m a white girl, she was an African American girl and she's way ahead of me I remember I just followed along. We were both in the same English class. and generally, I always thought it. always got a or a minus or something generally I always got an A or -A and generally she got a B or C, generally. Well for whatever reason, we just decided to swap papers, so I wrote my paper she wrote her paper buy we swapped we put each other’s name and we sent it inn. And then the paper that she wrote, I it had my handwriting it looked like mine, I still don't match. She still got to a B or B- or something.

NORMA STANLEY: That’s interesting.

Jane Fernandes: That’s when I started to get an inkling of things going on, I didn't yet apply to me. But I understood that there are assumptions being made about people, based on attributes that we’re born with attributes human attributes and assumptions are being made about what that means. Actually, our principal. Dr john he was an African American man. He almost blew his top. We just told him what we did. And you know nowadays it would never happen, because now, they have anonymous scraping all the school they don’t see them, they just grade the paper he's very upset that what we did, and he tried to explain that, if we have some mode if about clothing something about race which really made me my friend did, but I didn’t. I didn’t have a motive that it was the wrong way to go about it. Research and go to college get a degree figure out how to work on this problem. But anyway, so that’s the reverse. Get that A that I always got it was assuming I couldn’t do something so much pity for me as a deaf person.

Nadine Vogel: Right.

Jane Fernandes: I must not be able to do it. So even then, I wasn’t doing what I was capable of doing. Whatever I was getting was based on pity and my friends with based on race. Hearing things about hearing privilege and white privilege something like that.

Nadine Vogel: Well, so I have a question, do you think that that plays into or has played into what you've created at the College, which is the edge initiatives, my understanding is the edge initiatives all but equity and things like that so how does that all relate.

Jane Fernandes: It all does relate, yes, because in the end of the day, my life is about giving access to education. Good quality education to everyone who wants to receive it. And Guilford college is a very diverse campus mixed population of students who have learning disabilities a significant population of students on the autism spectrum and wide variety of races and ethnicities. Most recently 49% of the first year class are from racial and ethnic underrepresented racial and ethnic groups. So yes, at the edge a lot of the ad was founded in equity for all students, we wanted to create more connection between the world and the classroom.

Nadine Vogel: How do you do that?

Jane Fernandes: So, one way we did, that is to create a calendar we created a three-week term, and we gave everyone in school access to a three week experience off campus. And in the past, some people might have had bad experience, but only if they could afford to pay or they could afford the time or somehow they could manage it. But most of the students couldn't afford the time or the money so they never did it. This way, we may financial resources available to everyone. And they all have experiences off campus and may not that big them an edge when they went back to class because they understood what they were learning. Liberal arts courses, for they could see the direct connection between liberal arts and real world. And with so much speculation about college degree a lot the parents don't even believe it's worth the investment that's good evidence to show that it is really worth the investment.

Nadine Vogel: Well on that note I, we do need to go to commercial break, but I know Norma that you have some burning questions so as soon as we come back, I’m going to turn it over to you to ask so stay tuned for commercial break.

COMMERCIAL BREAK:

Nadine Vogel: Hi this is Nadine Vogel joined by Norma Stanley my co-host on today's episode of disabled lives matter. Again, more than just a podcast, it is a movement, and let me just tell you, the world is being moved right now by Jane Fernandez. The person that we are interviewing, who is the President of Guilford college. So Norma I think you had some questions.

NORMA STANLEY: Well yeah, I mean I just love what you shared about the childhood, and I was just wondering, you know when you became an adult did you actually find it was part of your purpose to become an activist for the Deaf community. As you know, as you were pursuing becoming a building into the Education Forum and becoming a president like what you are today at Guilford college is that something that came quite a bit you wanted to become, and you know do for the Community decides what you want to do for yourself.

Jane Fernandes: Well, it started, because what I was doing for myself, for example, the first time I learned about deaf people finally the first time I learned that deaf people most deaf people sign all day it’s a visual gestural language made for them, I was in graduate school at the University of Iowa. I went to deaf clubs and I learned that I’m deaf like them, but really we're so different. And you know that we both can't hear, but we have different ways of working in our world with that. But I became fascinated with that and my understanding that really bothered with my language, if only I knew that I would have learned growing up, maybe I wouldn't have been, so I committed to activism on behalf of deaf people. Because I thought, a little bit like I was denied. The world denied me knowledge of a language that I should have known or I denied myself I don't know what, but when I learned that turned everything around and the deaf community as a whole.

NORMA STANLEY: That’s important. We were interviewing a woman this morning from the network call sign one news and there a forum or station that dedicated to making sure that the deaf community is included in the news cycle, every day, you know. Journalism and you know she was sharing how that is certainly a critical component of making sure that they get the same news, and the same way that they understand it, the way they need to hear it and communicate it and that wasn't happening, and so you know, all this innovative, you know programming that like that like Nadine was talking about edge that you guys initiative that you're working with and it takes people like us to make that happen because not everybody sees the opportunity to change or to help make change others and that's what I believe that you're trying to do with you know the programs that you're implementing.

Nadine Vogel: And Jane we're going to introduce you to the CEO. The founder and CEO of sign one news I mean the entire news station is just sign, nothing is conveyed verbally, so I mentioned you to her and I promised I was going to mention her to you. And I’m going to connect you because I think it’s important.

NORMA STANLEY: Absolutely.

Nadine Vogel: So, you know, I have a question oh go ahead, oh go ahead Jane. Ok, I have a question about you know fast forward and thinking back to your mom and everything that she did to instill this this work ethic for you educationally and to work and fight for you at a time where we did not have the laws that we have today. Whether in the education system idea or the Ada. So, as we fast forward and look at today, you know I would love to get your perspective. on how that has changed. How it's changed for not only the student or the adult with disabilities in college or working, but maybe also how you think it's changed for parents.

Jane Fernandes: It's changed a lot. I don't know, but I feel in my lifetime things for deaf people have changed profoundly. I don't know we have a sense; I have a sense that I can get a new job I’m qualified for If I’m qualified no one can say I can't have a job because I’m done right and that wasn't the case when I was 20 years old. When I was 20 years old, I was full of anxiety that I’ve would never been hired, and we were doing anything right everyone in the. room all the time because I couldn't hear it's completely change. For parents there’s alot more information now and it's a lot more neutral it's more about the parents having all the information may need to have to decide about what they want to do for their children with disabilities. Completely changed and technology of the big change as well. Because that's our communication method last level playing field exist, yes, deaf people who can read and write English, but even that's not where you are now boom. The whole time or chapter on the zoom everything about it is about access and equality.

Nadine Vogel: Right right so in the years that you have been a college President obviously people go to college to get themselves ready to become employed. So, what changes have you seen or do you still have concerns that you see about your students as they graduate getting employment.

Jane Fernandes: That is the number one priority of the students for today and for their families there's an incredible amount of pressure on the student and on college, especially on the College to show that the education we provide is practical enough to be useful in career choices. That's why the edge combines the real world, and the clash makes it clear why students go in the oil and experience, jobs and then come back and go to class metaphorically, or to man, why bed go to college. At one time, we have more of a war about death babies yeah, they would be all manual. or sun and it would never mix the two things. Spain and have that will have an implanted in them have a cochlear implant or maybe they won't. Now I think it's more about our parents knowing all the information about all the options and may decide that's best for their child and later the child can make their own decision for some of the options there. That they can always do something else if they if they wish, I don't think it will happen again remind I hope never again that someone like myself could not even know that sign language existed. And at 23 and must start. But I don't have any regrets at all worked up on.

Nadine Vogel: Right. So do you find that students do really change and switch from perhaps how they were brought up either to use sign language or not. And that through their college and life experience that you're bringing that they choose to switch for some reason or change it up in some way.

Jane Fernandes: Yes. always happen, I mean I switched from not knowing sign language. So, for years I find I’m not been good my course for years and then I came back to I can do all these things are all part of one is not better than the other doesn’t make me more deaf or less deaf. Everything is probably and I do what I want with them.

Nadine Vogel: Well, and I think that's kind of although quite different, I do think it has some similarity to a family that's bilingual or trilingual. In that they're teaching the child multiple languages and the child will determine which one becomes their primary language or that they could use all of them at some point. But actually, on that note I do want to ask the question that we have been debating and other conversations, which is why is sign language not offered at least generally speaking in undergrad you know in high school and junior high school they offer Spanish and French and why isn't sign language, a core offering for language I don't understand.

Jane Fernandes: So that is my dream. I wish, I don't know how to do it, maybe the US Department of Education would pass a bill that everyone in every public school in the US alone sign language and culture say grade 3, grade 8, grade 12. Some people will not have any money not really like it up, they will be hurt by take my beloved son with our terms with them yeah. And, but everyone would know everyone would not have to go oh, she’s deaf. Everyone wants to be a community so public schools should teach our students about that, and I often think about that. We teach French, we teach German, those aren’t American language. I don't mean to be America is the best but that's our people were speaking time right people and our times speaking an American language and have an American culture that's different than the majority and, most of us don't even know they’re there. So, to have the Community dedicated to being quality and individualism I wish that we would teach more people about that why it doesn't happen I’m not sure I’m not sure why that doesn't happen.

Nadine Vogel: Because I think.

Jane Fernandes: Deaf people I don't know the low incidence I don't know.

Nadine Vogel: The fact that it doesn't happen to me is bothersome because it undermines what we're saying that disabled lives matter. Right, no matter what the disability, because if you if you know, to me, if someone is not willing to learn how to communicate. Then they don't think you matter then they don't think you matter enough to do that and that's bothersome you know at springboard at my company as an example, our business cards my business cards are brail. And we get asked all the time, oh, you know you must have someone who works in the organization, who needs reads brail. I said no, but I never know who I’m going to meet. That doesn't need that right, it goes back to your education is it's about equity and it's about equality, and when I think people don't understand is equality to me anyway, is not about treating everyone the same. it's about giving everyone the same ability to be successful right, and I know you shaking your head, I mean, so I guess you agree with that.

Jane Fernandes: Yeah, I agree with that completely. It's not about on everyone speaking English, so does all deaf people speak English because that's what we speak here right that we have a language that the American sign language. That helps us have access to information and knowledge, and we have ways that we can use that to gain equal role in society and be engaged citizen, as everyone had the right to be and should be.

Nadine Vogel: So, I know we're about out of time, but I do have one more question and I think normal, you may have as well, which is. How have you or have you been able to use your position with your colleagues, Presidents of other colleges and universities to kind of come around. And to understand the importance of people with disabilities at their schools and for mainstreaming them within their universities have you been able to do that.

Jane Fernandes: Well, I’ve done it on a small-scale small scale, because the work that Guilford does with students who have learning disabilities and on the autism spectrum that is probably unknown not very well known, but very, very astonishing. Basically, my students are just being themselves we are not about changing anything, and we accept who they are. But we provide them support and many of them are change, they transform while they're at the school and very successful after school. But it's sort of a I don't know it's a personal or a deeply help out and it's not about making and it's not like you're making a movement right.

Nadine Vogel: Right.

Jane Fernandes: You’re good at the movement. I’m so onboard with your movement.

Nadine Vogel: So important oh my gosh. Norma, I know we’re running out of time but is there anything else you’d like to ask.

NORMA STANLEY: I was just wondering; you know if there are any corporations that may be working with some of the graduates of your school that you might want to you know anyone that you see they're really trying to include the deaf community as a look for hires, are there any companies, you might want to recognize or you know mention or you know do you get any of that attention from companies.

Jane Fernandes: I could, I have to think about that, but yes sure I can think of some corporations and companies in Greensboro North Carolina with whom I work that have been helpful in the employment. I'm on the board of industries for the Blind solutions and Winston Salem. And we work with Guilford, and I work together to provide education for blind people at the IFP and we are developing a program started with just a class one class and one of my other classes class the last day of class on her own sort of a diploma. I will now we're talking about having the students come to your admin role as. The constraints that awesome yeah. I think I could get back to you with some of the corporations.

Nadine Vogel: Right that's really important well Jane Thank you so very much. Unfortunately we are out of time this half hour I just flew. But we absolutely cannot let so much time pass this time until we speak again, I definitely am going to introduce you to Sign one TV and talk to you more about some other opportunities, so thank you, we wish you all the best. Keep going with Guilford doing great work and we will talk soon, this is Nadine Vogel signing off along with my co-host my partner in crime. Norma Stanley on Disabled Lives Matter.

NORMA STANLEY: Be Blessed.

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates. The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advise and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast. The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or Listen Device.

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Disabled Lives Matter

Season 1, Episode 19

Co-Hosts: Nadine Vogel & Norma Stanely

Guest: Karen Graham

Intro: [Music playing in background] Disabled Lives Matter… here we go!

Voiceover: Hello and welcome to this week’s episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley... yay!

Nadine Vogel: Hello everyone, this is Nadine Vogel coming to you from disabled lives matters podcast and I am joined by my co-host who just returned from a trip to Vegas.

Norma Stanley: Hello everybody, hope everybody is well.

Nadine Vogel: So, Norma, did you have a good time in Vegas?

Norma Stanley: I really did I was very thankful for the opportunity I got to visit my niece and her horses she trains, and you know it was just a very quiet vacation, which is what I needed.

Nadine Vogel: Yeah no, absolutely and I’m curious you know for Sierra for your daughter, how was it from an accessibility stand.

Norma Stanley: Well, there was challenges there. That was her first time going to Vegas and it was just now opening back up, so there were areas where you know I don't know how long you’ve been there, but there are spots with you can walk and then you have to go, what do you call those things.

Nadine Vogel: Bridges.

Norma Stanley: Yeah, those things. The elevators weren't working. In a couple of situations, so I turned around. So, that was not happy, I wasn't happy, so I am going to be writing an article about that, because a lot of people, a lot of seniors there with wheelchairs. And even if even if you could go up the stairs there are like three flights of stairs it's tiring for older people, you know, and we just really need to stay on top of that. They say they didn’t have that problem before, but the fact is it's happened to me twice, while I was there.

Nadine Vogel: Yeah, that's not good. I want to see some social media, I want to see some articles.

Norma Stanley: Yeah, I’m putting something together because I was not happy. But other than that, it was great.

Nadine Vogel: Okay, well good. Well, this podcast as we always say is more than just a podcast it's a movement and to help us lead this movement today is Karen Graham. Karen is a 20-year broadcast journalist, Karen, I think you started when you were two. And co-founder and CEO of sign one news so welcome to the show and Karen.

Karen Graham Sign1News: Thank you so much it's my pleasure.

Nadine Vogel: Wow I have you know what I don't even know where to begin, because I have so many questions to ask. Norma do you want to get started for us today.

Norma Stanley: I just kind of want to get an understanding of what incentivized you to start sign or news. How did that come about? Was it something that ou had in terms of a family relationship, because sometimes we get motivation to do this because of a personal situation, how did you get started?

Nadine Vogel: And before that Karen just, what is sign one news.

Karen Graham Sign1News: Well, first thank you both. Sign one news is a digital news network for deaf and hard of hearing viewers all over the world. That's it in a nutshell. We're cloud based, you could reach us if you got a social media platform, we're on them we're everywhere we're in 45 countries. And the staffing is majority death, even though we are technically a hearing company. The majority of my staff is deaf, and I wanted to make sure that was the case when I started the company so basically the news that you see we're doing the exact same thing, just an American sign language that’s it.

Nadine Vogel: Love it.

Norma Stanley: How did that get started, like, why did you feel the need to do that.

Karen Graham Sign1News: How much time you got.

Nadine Vogel: We got some time babe.

Karen Graham Sign1News: No, I’m going to give you the short version I had, I can say had now, I had no entry into the disability Community before I started sign one news I have no deaf family members, I’m going to just again truncate it and say God told me to do it, and a lot of people say that I’ve heard a lot of deaf people say oh yeah we've heard 1000 times. You that, and you know, but in this case, it was it was true I knew that I had a gift to give which was broadcasting. My co CEO Jabari Butler he's not here, he has technical knowledge that was beyond even what was being put out there now. And we brought those two forces together and decided to just create this platform and say here deaf Community we're here, take everything we've got you become the stars me being on this podcast quite honestly, I think it's just third time I’ve been on camera since I’ve started this company. Because it's not it's not about me it really isn't it's about the face of the Deaf community and empowerment. And that's what we've done our, I'm going to say our anchors are superstars now. They are, they are household names, they have covered some of the biggest events in the world super bowls, nascar, political debates, they have been toe to toe and a lot of people say to me well. Why don't you become a nonprofit and I said well nonprofits fine we may do that, eventually, but I want it my staff to stand toe to toe with my colleagues. I didn’t want that to be well let’s have the nonprofit def group come in and interview, no, no, no, no, no I’ve seen my photographer goes toe to toe with shoulder to shoulder with other photographers trying to get that shot I’ve seen my anchors throw their question in in what we call a scrum where questions are flying and right there on the front and I wanted them to be seen as journalists. Not deaf journalists, journalists. And that's what has happened I’m so proud so proud.

Nadine Vogel: You know I'm so excited to hear that. When I started Springboard my company 16 plus years ago and people heard it was around disability everybody asked me the same question, they said oh it's a nonprofit, I was like no. I want disability to be as important as any other thing.

Karen Graham Sign1News: Come on Nadine, yes.

Nadine Vogel: So I’m like bring it on babe. Bring it on. I completely understand, and I remember people looking at me like I had four heads like well that’s not going to make sense.

Karen Graham Sign1News: Nadine, I found my tribe. I found my tribe.

Nadine Vogel: How is it ever going to make money, how is anybody else like you let me worry about that right.

Karen Graham Sign1News: Yes, and it hasn't been an easy journey, no, it has not been. it's worth the fight it's worth and we're making headway we're making headway.

Nadine Vogel: Well, you know something that actually Norma, I think you know, in the next couple of weeks, one of our shows we're going to be interviewing Jane Fernandez, and if you don't know Jane you need to know her. She’s the President of Guilford college and she is deaf and so, if you don't know how I want to introduce it. Cause she would be an amazing guest on your show.

Karen Graham Sign1News: And see now switching to my reporter had that name again Jane Fernandez, possible interview.

Nadine Vogel: Yes, I’m going to send you the email but let's talk about that, because I think people need to understand your background, so you know, Norma asked why you started this. But it wasn't like you know you were working in the mailroom and suddenly decided, I mean you got you got some chops here, can you share some of that with us.

Karen Graham Sign1News: Again, I'm a 20-year journalist in news sports and Infotainment as we call it, I was a host of good day Atlanta in Atlanta Georgia before I left to start this network, I have three Emmy awards and so to the point. I was very well, I had a really good job I did not have to go, I could have basically just killed over the anchor desk, and I would have been you know fine I would have been a great career. But God was calling me again to do something different, and the call was very loud, and I could have saved, but it would have it would have ripped my spirit, if I had done that. If you watch very closely the last six months of my time on TV, my friends who know me know that I was torn because my body was on the set. But my mind spirit and soul was already at sign one news I had already left the building, if you will, and already creating an idea eating this this this thing that was just being born and had never been done before, so I had no blueprint, we were the blueprint yeah all of my heart was in that, and I was I couldn't have stayed I would have been I couldn't I at all of my being was in this space over here and I was just and I can't do anything if I if it's not with passion.

Nadine Vogel: Yep.

Karen Graham Sign1News: Well, I figure it's not fair to the audience, who was watching me that Karen, you’re phoning it, you’re phoning it in. No, you need to go you're being called to go and do that thing and so yeah, I did walk away from a lucrative career um but sometimes it's great to make a living, but sometimes it's better to live and feel alive and I felt alive doing this and I wasn't alive and everything so.

Nadine Vogel: You know I what I’m hearing is do that which others can do won't do or don't know how to do, right, and you just threw it together, I’m, wow. Now you yourself know sign language.

Karen Graham Sign1News: I do, if you asked me why I don't know I honestly, you've got this weird guest, that I have no idea why I’m fluent in the language, I have no idea why I understand the language I had no exposure to it coming up. But, again, I said ok God I’ll take I’ll take some courses that was like 12 years ago I’ll take some courses if a just a quiet. And so, the very first class I’ll never forget it my professor, who was death was signing away and I’m not in appropriately in the right places and I’m laughing at the right spots, and he looked at me strange and he signed you understand me I’m like yeah, I do and I have no idea why, there we go there. I guess it was another gift the hidden talent, that I had and that's when I eventually became just immersed in the deaf community, and now I had yes, now I have tons of deaf friends and family. I found a family member, I literally found a long-lost cousin like three generations down, we were chatting and chatting, and he goes your last name is what I’m like my family's last name is it you live, where. You’re my cousin. So, technically I have debt family members, now, so I didn't know.

Nadine Vogel: That’s pretty cool and it’s interesting, I have a pet peeve and love to know what you think about it, which is that. You know when kids are in school and they're taught foreign language to given a choice of like Spanish, Italian, German, whatever I’ve never seen sign language as a language being offered I don't know if in Atlanta you see it different I’ve not seen it at all, no.

Karen Graham Sign1News: But I do know that a lot of people that I meet who said oh I love sign language I learned it as a kid. It's not an official Lee taught language and in classes, but somewhere someone's exposed to it in schools yeah so, I’m not sure how that but that's where a lot of if you asked a lot of interpreters. It’s like, I was exposed to it in school, and it was maybe what and, for me the same thing was one guy signed something when I was in the third grade and I think that's where the seed is planted, but I think to your point I would love to see that movement. As an elective like Spanish and French, and you know German I’d love to see it.

Nadine Vogel: Well maybe sign one news could.

Karen Graham Sign1News: Okay, alright, here we go thanks.

Nadine Vogel: The instigator.

Karen Graham Sign1News: Now I’m going to have to focus my brain just literally just took a right turn, let me see how to make that happen.

Nadine Vogel: I’m gonna volunteer Norma and she's like you need to you know find one or two schools, that would say yeah we'll do it, maybe sign one.

Norma Stanley: Absolutely I’m sure we can find some schools or something.

Nadine Vogel: You create a model, that others can follow.

Norma Stanley: I think that's a great idea I think it's something that the younger they start, the better. After me, I will use our students with disabilities, whatever they are to others and hold in terms of opportunity.

Karen Graham Sign1News: Okay, this is a sign for you just blew my mind.

Norma Stanley: So much happened that needs to be done.

Karen Graham Sign1News: Our mission is to be a pipeline for schools to be a pipeline for young people to employment, eventually, because that's our job if you know the numbers, if you read the studies. I’m sure disability numbers, but in that number the unemployment number for the Deaf community is like 80% it’s just ridiculously high. So, granted we're just a small wheel in this thing, but we want to make a pipeline to employment. That would ideal.

Norma Stanley: That would be awesome.

Karen Graham Sign1News: I’ll be sure to attribute when I'm talking about this story in about five years when we get started, thanks to Nadine and Norma.

Nadine Vogel: It can’t wait five years baby. 2022, I want to see the first one.

Karen Graham Sign1News: Goal setting. My other thing.

Nadine Vogel: You and I are kindred spirits. And you graduated from university of South Florida right.

Karen Graham Sign1News: I got my masters from the University of South Florida my undergrad was from Vanderbilt university.

Nadine Vogel: I went to USF my first two years of college.

Karen Graham Sign1News: Wow. I love the connections of a small world. Yes, you’re a south Florida Bull. I lived in Tampa That was where I started my television career, I’m in. Florida, with TV channel 13.

Nadine Vogel: Very cool all right well on that note, we are going to go to commercial break and then we are going to come back with the amazing the amazing guest that we have today Karen Graham and hear more about Sign One News.

Voiceover: And now, it’s time for a commercial break.

COMMERCIAL BREAK:

Hi I’m here to talk to you about springboard 20 21/7 annual disability correct form save the date it’s happening Tuesday, September 14 via live stream you know we take the phrase we are better together why because together we can achieve change especially since this forum focuses on the intersexuality of persons with disabilities the LGBTQ I a plus community and veterans the major issues impacting these constituents and more so join us for the conversation again the 2021 disability connect forum live stream Tuesday, September 14 learn more purchase a ticket and register visit www.consultspringboard.com front/2021-disability-connect front/#WelcomeCan’tWaitToSeeYouThere

Voiceover: And now, back to our show.

Nadine Vogel: Hello Hello, this is Nadine Vogel and I am back on today's episode of disabled lives matter with my cohost the wonderful Norma Stanley.

Norma Stanley: Hey everybody.

Nadine Vogel: And we are interviewing another wonderful lady Karen Graham CEO of sign one news so Norma, take it away.

Norma Stanley: Well, you know we recently had one of your anchor’s martha anger on our show, and that was really a learning and teaching moment for us because we're trying to communicate with her and we didn't know sign and we were having to depend on the captions to be able to answer, and so, how do you, you know, in terms of making sure, and if communicating to others who are working with the deaf community, what are the keys that that you know just basic information that you have to have that you should always have when you're when you're communicating with people who are deaf, I mean companies are still not really there. In terms of communicating internal staff that may you know may need that assistance, much less those who have tried to talk to externally, what recommendations would you make.

Karen Graham Sign1News: Higher and interpret. That really is that's The bottom line, and I do want to share this story with you because you bring up an interesting point. Just as the Covid vaccine was hitting the world, and there were press conferences all over people were doing press conferences all over from different TV stations. As a CNN affiliate we have access to just feeds people doing press conferences about everything, and so we were piping this information into our network, because it was vital. Here's what was happening, and you know this already so there would be this great big wide shot there's an interpreter standing in front of the rooms like great and the photographer would just zoom in and crop out the interpreter, to which I was like can I get the assignment desk for who W H TV. Please, can you please tell your photographer and did that 1000 times to just please don't crop out the interpreter. No disrespect to the photographer because they don't know they just want to quick shot and that great shot is like just the one person talking about who's that strange person standing on the side. I literally made that call 1000 times, I was very nice about it, although inside I was deeming that here's, the world is being informed about something that was so new and so tragic and had us all on our heels, and yet one population was left out. So, you know, eventually, though you if you notice, you see more and more interpreter staying in the frame I’m not going to take credit for that, however, there are several newsrooms are like please don't let that woman call again. If there's an interpreter in the room, I do not want to hear that woman's voice again, because I called incessantly and so it’s just awareness. It's just awareness just know that if there's an interpreter in the room they're there for a reason. they're there to make sure access is for everyone, everyone so just FYI be aware, if you're a company, and you know you have diversity, when it comes to language accessibility just be aware of it don't be like this and just not paying attention and then Oh well.

Nadine Vogel: Otherwise, you know, otherwise what happens is it's almost like you know you know when you go to a conference like the voice of God, like where's the voice coming from right, you know I mean it's just you must see who is communicating and that person is part of the communication.

Karen Graham Sign1News: Correct exactly.

Norma Stanley: And that is part of what we have to do as advocates basically is educate enlighten so that you know community can be an hour and a lot of companies doing it right and that it just missing out on pockets of the Community.

Karen Graham Sign1News: And let me applaud you ladies to because I’m gonna tell everybody what you did before we came on air they said, make sure captions on, and I was like thank you. It’s something as simple as that, if you don't have an interpreter and you're doing video just make sure the captions on that's it that's another viable option what we learned with fine when news is, as we did a little secret survey, we asked our audience, would you prefer asl would you prefer captioning. 100% they were like we prefer signing that's our first language is signing but but don't take anything away we would rather have something versus nothing night. But if English is not, I think I don't think a lot of people understand this, English and asl are not the same they're completely different languages, completely different grammatical structure is completely different rules. Right and so it's like I know, Spanish and I could pick out a few words, and I know I know what you're saying, but comprehension, is what I would be missing and that’s like captioning. I understand English words, but do I know what they need, that’s kind of the same concept as ASL. I know English when I see it, but the complete understanding I’m not so sure if asl is your first language, so I was grateful to have, bottom line I was just grateful that you had captioning I was so happy to see it.

Nadine Vogel: Well, and I think that people don't realize, you know about captioning that it's, not just for someone who may be deaf but someone who English is not their first language. For speaking in English more if someone is aging and has slower processing or learning disability or you can get transcripts, I mean there's so many benefits to captioning. That you know it's like.

Karen Graham Sign1News Also, if you see captioning it looks like basically a puppy is on a keyboard sometimes no offense against captures but sometimes it's like that's not what we say it's just grabbing mess exactly it's like oh my gosh.

Nadine Vogel: No that's and that's important because, like when springboard has our big conferences, we don't use auto captioning we have a caption or that has worked with us for 15 years and knows disability like knows the disability language. Yes, in and out so this way it's accurate right, because otherwise it's just gibberish.

Norma Stanley: Yeah, you see something on TV when the when the captions that’s not what that person said. It's really interesting what they hear as the typing the information.

Nadine Vogel: Right, it’s almost more accurate to just read the lips. It is a challenge, so let me ask you this, for those out there that want to be in this business in the entertainment business front of camera behind camera production doesn't matter. How do they get to you how do they learn more and how did they tell others about what you're doing to say see you can hire me.

Karen Graham Sign1News: Yes, yes, well, we have all well you know we have a contact me, and you can always send us a video. But here's what I found, which is very interesting when I started the network, I went in taking the model of how I got into television and applied it to this new platform, but it did not work, Nadine. Because I had before we launched, we did a nationwide search for talent, we wanted, you know. At least a year of college you wanted strong, basically pulled list of stuff that's over here yeah, my three anchors that I hired out of the gate had none of those things, not one, but they were phenomenal. And so that's when I realized that what was on paper that didn't translate to what's on the screen.

Nadine Vogel: Right.

Karen Graham Sign1News: So, there are a lot of people with that raw natural talent, who know how to tell a story, who can see the news see it see it in English, you do have to have some strong English because you have to translate from English to asl and so to read it a news copy story and say got it and put it out asl that's what that's the strength you can't wait where is that, where do you learn that in school.

Nadine Vogel: Yeah, because, because even though. You know it's more difficult for individuals with disabilities get internships and things like that to your point who's teaching that.

Karen Graham Sign1News: And so, we basically taught our team from the ground up to so that they became who they are. So, we don't have an official hiring right now, because we're full and we're still recovering from covid right now, like the rest of the world we're coming back to full strength. But we're looking always looking for watching always looking for raw talent. And, and a lot of it is someone who knows, someone. So it's really not on call it's hey I’ve got a friend who's pretty good if you trust that person and their personality type rating likely that they are birds of a feather flock together, and so, of the team that we have that's what happened, I know her, and then I know him and I know him and that's how we hired and it was great.

Nadine Vogel: But you know it's interesting for me so I’m starting to think about veterans and veteran employment. There has been and continues to be, this issue of if we have a veteran and let's see served in the field artillery. And now they're going into the private sector HR has difficulty understanding how does that works first. How does that translate to whatever this job is, and you always need to translate? And what I’m hearing you say is I think what the entertainment industry needs some of is exactly that is how do we take these individuals who may not necessarily appear like there's a match right and figure out what you know how we convert what it is they can do that raw talent to this. And I’m sure that that's not easy at all I’m just giving you something else to think about to do but.

Karen Graham Sign1News: Page two now of my notes.

Nadine Vogel: Well, because you know, again we work a lot with the entertainment industry, and I see so much of what's missing, and this is another piece, and this piece specifically is not addressed in anything that I can think of.

Karen Graham Sign1News: Exactly and as someone who, who is in the entertainment field you've heard the term before that X factor it's just something you can't put your finger on it. Again, on paper, but when you. see it, you know it it's that simple pow, Norma when I met you, it was at a school when mark and I first met you, I believe it was. And there was a young man I forgot his name, he's an amazing entertainer Do you know what I’m talking about.

Norma Stanley: It was probably the show ability.

Karen Graham Sign1News: Yes, Show ability, he had that thing I couldn't take my eyes off of him he was like a headliner. So, that's what we look for that thing where you’re good, you’re a natural.

Norma Stanley: You’re probably thinking of Delvis.

Karen Graham Sign1News: Yes, that’s him.

Norma Stanley: Yeah, he takes on that personality So yes, yes, definitely has that thing, whatever that is.

Karen Graham Sign1News: Whatever it is that's what we look for yeah.

Nadine Vogel: I think that's amazing I mean I’m just hoping that through DLM through disabled lives matter, we can really promote what you're doing even more, you know I recall I don't this is goes back many years I don't know if this still exists, but there was something called deaf chat coffee. And it started in Seattle, where a group of individuals who are deaf wanted to form a social network and how they did it is they met at local Starbucks. So, they could communicate via signing and it started there but it expanded to many cities throughout like the Northwest I don't know where it went from there, but it's my understanding that it really influenced Starbucks to start having baristas.

Karen Graham Sign1News: The signing store in Washington DC, wow.

Nadine Vogel: So, it just you know it's just interesting how one thing leads to another without even necessarily realizing. That you're going to have so, I’m really excited about it yeah, what do you see what's your what's your next you know 1-to-3-year horizon.

Karen Graham Sign1News: We’ve got a lot, it’s huge. Again, for Proprietary reasons I can't but again we keep creating things that don't exist and we're doing it we're about to do it again something like this did not exist before people have been doing def news for years. But as a network affiliation that it never been done before right so and to be on these digital platforms that we're on now, and now we're about to do it again in a different space. I will tell you it is in the entertainment world and again never been done before so.

Nadine Vogel: Well, I’m going to hopefully try to help you with that, so I have a few TV shows that I have and work with the network so I’m going to follow up with you/

Karen Graham Sign1News: Well, yes, we're gonna chat offline definitely for sure. And I encourage everyone to please just follow us download our APP if you have if you can we do persist on the kindness of strangers, and so, if you'd like to the APP is $1.99. You can watch us for free, I mean that's that we can, but if you'd like to contribute, that would be great we'd appreciate.

Nadine Vogel: So tell us all, we want to, we want to promote the heck out of you. People want to find you what's the best give us a website, give us a phone number give us something.

Karen Graham Sign1News: Everything sign one news, Sign1News/Facebook, Sign1News Twitter, Sign1News.com Instagram, Sign1News website

Nadine Vogel: And the number one or spelled out.

Karen Graham Sign1News: It’s the number one good. Thank you, it is the number one so that's S I G N 1 NEWS, is our website that's where you can go if you just like to say hey, we love what you're doing and contribute financially would appreciate that. You can also download our APP we're in the APP store and the Google play store again, you can watch our content free. But you can also. pay for the APP if you'd like just to help.

Nadine Vogel: Well, I love this I mean you clearly, clearly illustrate disabled lives do matter and that's all about Norma anything else you want to add or ask.

Norma Stanley: I’m just so excited that we get a chance to finally talk with you and looking forward to connecting and seeing how we can work together and make sure that everybody is included in this whole process that we call life.

Nadine Vogel: Absolutely well for disabled lives matter podcast this is Nadine Vogel, wanted to say thank you Karen, thank you for everything you're doing this was so exciting chatting with you. Norma, as always, my amazing cohost, love doing this with you. Thank you so much.

Norma Stanley: Thank you.

Nadine Vogel: And we will see everyone on the next episode bye everybody.

Norma Stanley: Thanks, talk to you soon Karen.

Karen Graham Sign1News: Bye.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates. The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advise and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast. The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or Listen Device.

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Disabled Lives Matter

Season 1, Episode 17

Co-Hosts: Nadine Vogel & Norma Stanley

Guest: Vincenzo Piscopo

Intro: [Music playing in background] Disabled Lives Matter… here we go!

Voiceover: Hello and welcome to this week’s episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley... yay!

Nadine Vogel: Hi I’m Nadine Vogel and your co-host of disabled lives matter and with me, is my co-host Norma Stanley.

Norma Stanley: Hello everybody.

Nadine Vogel: Norma, this is not just a podcast it's a what.

Norma Stanley: It is a movement.

Nadine Vogel: Absolutely, to help us to help us with that movement, we have a wonderful guest today in Vincenzo Piscopo, did I say that right.

Vincenzo Piscopo: Perfect.

Nadine Vogel: Alright. I love the Italian language but I’m always afraid of botching it up.

Vincenzo Piscopo: No, no, you did wonderful.

Nadine Vogel: Okay, so Vincenzo you are a public and community affairs and corporate social responsibility, professional I believe you've worked in the US and global you have worked in corporate and in nonprofit, and today I believe you are the CEO of united spinal association. Is that correct. So tell us because I think that's fairly new right just since maybe the end of last year.

Vincenzo Piscopo: Yeah, six months.

Nadine Vogel: Okay, so tell us a little bit about yourself and your background, as I’ve said, and then let's talk about united spinal.

Vincenzo Piscopo: Yes, absolutely, so I am from Venezuela, I was born and grew up in Venezuela my parents are Italian, but I came to the US 27 years ago I came here to get my MBA and right after I finished my MBA, I was hired by the Coca Cola company, and I worked for Coca Cola company for 25 years. And then, after that, I decided to make the big step of moving from the for-profit world to the nonprofit world. I am, I was injured 10 years 11 years ago with a spinal cord injury that left me paralyzed and that was the time you know when I started working and advocating for the community of people with disabilities, and so I have been in the Community for close to 11 years. And, and the more that I work with this Community, the more that I am passionate about it because I, II super impressed with the brilliance of that community of people with disabilities but also disappointed with the fact that society does not leverage such brilliance, so my legacy or my role in United spinal but also as a human being is going to be, or you know I’m trying to be, to actually remove that stigma that is stopping the world from you know, taking advantage of the brilliance of their community of people with disabilities.

Nadine Vogel: See now our listeners know already why we're interviewing you. Because you are the perfect example of disabled lives matter.

Vincenzo Piscopo: Right.

Nadine Vogel: Let me ask you, that transition from for-profit, to non-profit um you know, going from a company, a very large global company, where you know, yes, has initiatives around disability to a nonprofit where everything is about disability. What was that transition like for you?

Vincenzo Piscopo: It was fun, I mean I’m happy and I’m enjoying it a lot, you know from it from a managerial perspective, you know the difference is that. You know, instead of working for the stakeholders, or for the stockholders right it, you know you're working for the Community right, so the profits, you know. With both instances, you have to develop and execute strategies that allow the organization to generate profits, with the difference that the profits in the nonprofit actually go to help that community. That we're serving and for me that is so energizing because I really, you know, as I said before, I think that you know we are wasting a lot of talent. And so, for me it feels very good that all my efforts are going towards specifically to help in that community other than that. You know the nonprofit world is definitely a different world you know they're limited resources and you really have to be more creative on how you use the limited resources to have that that great impact in our body, so I had obviously we know where you come from such a big company with so many resources and you move to a you know, a relatively small organization it's always you know shocking. But you know it's also you know, makes me very proud of the united spinal team because it's a team that with limited resources has been able to accomplish so much for the community in the last 75 years.

Nadine Vogel: So, what is the mission of the organization.

Vincenzo Piscopo: So, the mission of the organization is actually to empower and advocate for people with spinal cord injury and disorder, so people that live with paralysis, so that they can have the best quality of life, so that they can exercise their passions, they can be innovators and they can actually you know, the way I always say is that they can live their life at their fullest potential. So the organization does a lot around advocacy for bills and policies that advocate for the quality of life of people like me and or people with paralysis in general but also we have a very successful thorough resource center that we provide services to the Community, and we give them tools, services, that allow them to you know to get that information they need to be able to really go out and conquer the world.

Norma Stanley: Speaking of conquering the world, one of my favorite places number one place on my list to go see next year is Italy and would love to take my daughter, who is a wheelchair user. I don’t know how long it’s been since you've been there, but you know, how easy is it to get around and the chair it tasted like I don't know, any place, Rome.

Vincenzo Piscopo: That’s a great question, Norma, I was in Italy as a wheelchair user several times as a wheelchair user, you know it's not the US from an accessibility perspective, you know I can tell you, for example, when I was rolling on the streets of Rome I fell a couple of times because of that, the roads are very bumpy because they're so it's very bumping and when you're in a wheelchair, you know it's very easy to you know to fall forward, you know. You know if you are propelling your daughter, you might be a little bit different you know safer, because you can control it more but if you're self-propelling it's you know it's a challenge because it's not as smooth row. You know finding accessible bathrooms in you know unless you go to like a big place for you know, but if you go to one of those tiny restaurants in the middle of you know, Rome and all that. You know, accessibility is an issue like you know getting in the restaurant, because they would have like a big step with you have to go down. Right or you know the bathroom is like you know tiny, tiny but on top of that, they have like a big you know they use it also for storage so like you know there's no way for you to get in. So those are the kind of things that I faced but I would not stop yourself from going to Italy it's such a beautiful place that you know you will figure it out.

Norma Stanley: Yeah, well I look forward to it.

Vincenzo Piscopo: I was going to say, especially if your daughter does not you know if she does if she doesn't use the power chair, like a manual chair. It may be easier because they're you know they're not as bulky and all that, and you know but it's doable it's doable and you and your daughter will love it.

Norma Stanley: I look forward to it.

Nadine Vogel: You almost need like the MARS Rover you know, like one of these like mechanical things that can go over rocks and go over a wall.

Norma Stanley: Yeah.

Vincenzo Piscopo: Exactly. Exactly.

Nadine Vogel: The next iteration of wheelchairs for travelers.

Norma Stanley: Right.

Vincenzo Piscopo: It’s funny, I’ll tell you I went to, I was, I was in Spain, a couple of years ago in the Canary Islands, you know what you know those are little you know they're not that big of islands. And I was very impressed with their transportation services, you know. All the buses were accessible, so they had like a little ramp that went down and allow me to get in with a wheelchair, and all that and that made my life they're very, very you know easy. So, I mean you know you'll find anything, you will find all things, but you know just be there with a good attitude, and you know, and you'll be fine.

Norma Stanley: Well actually, Spain is my number two place to go so thank you.

Nadine Vogel: We’re going to have to take this to the Travel channel.

Norma Stanley: Definitely, I just I thought he would be the best person to ask.

Nadine Vogel: Absolutely. I mean it's true traveling you know with a variety of disabilities every country has its own legislation. And you know around the world there are some very old countries and yeah it can be very challenging and then you add you know language differences and everything else so certainly, I think that can be an issue. So I’m curious to bring you back to United spinal I mean, when you provide you said resource Center right and tools and services does it include things like you know if you're traveling and you know you have a spinal cord injury, I mean do you do that kind of support as well.

Vincenzo Piscopo: Yeah, yeah, we do all that, I mean you know our focus is to ensure that you know you go out there and live life to the fullest, so we have a network of hundreds of peer support groups around the country because we are our Organization has 50 chapters around the nation, and you know the chapters have beautiful groups and you know, during those peer support encounters you know we touch up on any kind of topics, but also, you know we have. Four or five specialists that are ready to answer any question so from you know from traveling to bladder management. To get in the right wheelchair, and they are a team of amazing individuals they are all with spinal cord injuries or with a disability, and you know if they don't have the information, they will find it for you.

Nadine Vogel: That's great well you know I want to know more about these chapters, because I actually didn't know that I didn't know that united spinal did have chapters around the country and so we're going to go to commercial break, but when we come back I’d love to know more about you know, do the chapters have different focuses depending on where they are in the country, you know how big is really the membership, how we can get involved so stay tuned Norman I will be right back talking within Vincenzo about united spinal as soon as you come back from commercial break. Thank you.

Voiceover: And now it’s time for a commercial break.

COMMERCIAL BREAK:

Voiceover: And now, back to our show.

Nadine Vogel: This is Nadine Vogel, I’m with my co-host Norma Stanley we are back on today's episode of disabled lives matters with Vincenzo Piscopo. So Vincenzo before we broke for commercial we were talking about and to my surprise that United Spinal has 50 chapters, does that mean there's one in each state.

Vincenzo Piscopo: So, we do have 50 chapters, now, there is no unfortunately we don't have one in each state but we're looking to open, you know as many as possible. It all depends on you know how many people in the area are there are willing to start the chapter, so we have many, many, many states, there are some states that we have more than one chapter. Okay, and yeah. And they vary, some of the chapters are big chapters, some of them are little bit smaller but, most of them are you know, some of them have like full time employees that receives salaries, some of them are all run by volunteers.

Nadine Vogel: Got it got it and do different chapters have different, I guess, I want to say focuses under that umbrella mission in terms of what they do.

Vincenzo Piscopo: To an extent right, so you know the chapters are very independent and the sense that they will work on the areas that they believe their community needs the most. But, but in general they respond to you know, to the macro needs of the Community, so that you know we can all work together for the same you know you know, with the same focus on the same hand however you know, there are chapters that are you know, bigger than and do many more things and have the ability to do more things for the Community. And they're all the chapters that are smaller and they're more social in nature, so it varies depending on the size of the chapter and the energy of the Members, but at the end you know we all want to do good by the community.

Nadine Vogel: Yeah absolutely. So, when we first started, you were talking about one of the things, one of the big things that United Spinal does, is advocate and advocacy around policies and bills on, is there any one piece of legislation or policy that right now is a big deal for you guys.

Vincenzo Piscopo: There's several you know there's four things that we always are. With our eyes wide open and making sure that you know our government is doing the right thing you know one is transportation right, so we want to make sure that the people with disability in general, but people with mobility, disabilities in specific are well taken care of that have access to public transportation, but also have access to technology that is being developed as it relates to transportation, you know, to give you an example of autonomous vehicles, so making sure that the industry of autonomous vehicle are taking us into consideration when developing technology. To ensure that you know we will have access to that technology, which is extremely important for the community of people with you know with paralysis, so that's the first one. The second one is employment, you know everything related to employment and making sure that you know that people with disabilities and specifically with mobility, disabilities with paralysis. Have access to employment and are not discriminated against when they're being employed and have all the accommodations that are required to be successful when they work. The third one is technology, you know everything around technology is also you know, with efforts on minimizing the digital divide a technology divide and all that that's something that is big priority for United spinal big priority for me and therefore big priority on our advocacy efforts. You know I always say with technology it's a little bit worrisome because technology is advancing so fast but unfortunately, is not always including us as it's being developed and what that creates is a bigger gap. That is very hard to recover from. So we as an organization, have to be in the forefront, to make sure that the technology world that technology industry is taking it into consideration at the beginning. Throwing paper when developing technologies so that our needs are addressed, and that gap is not increased. So, you know one thing that I always tell technology partners of United Spinal is that when technology organizations are developing products that are addressing our needs, they are also innovating for mainstream. So that's extremely valuable for them, so it really makes sense for them to take care of. But anyways from an advocacy perspective, we want to make sure that you know that technology that they all the technology related bills and policies really makes it easier for us to stop that digital divide, and not to make it bigger and, finally, is access to health care. You know so that's another one that you know it's big it's enough to tell you the truth is embarrassing you know because of all the limitations and all, the hoops that we have to go over to be able to get the right wheelchair the right medical treatment and so on, so forth, and not only that you know all of the inconsistency around Medicaid Medicare as it as it relates to caregivers and covering caregivers and then your ability to work if you're getting a caregiver and all that that actually what he does it's penalized people that are talented yeah I know like people that really want to advance in life so me as a CEO and united spinal’s organization is going to have that you know as a big fight for the next 75 years.

Nadine Vogel: Yeah, and I would imagine and Norma, you and I have talked about this that that you know the healthcare access under this timeframe of covid has been particularly difficult.

Vincenzo Piscopo: Yeah, and it hasn't been you know it hasn't been exacerbated by the other things that I mentioned, like the digital divide, like their lack of access to transportation, that is accessible. So, it really, it's you know it's a full circle, if you think about it all those four things work in tandem to really that you know if they're not working to help us they actually create big problems for us that really stop us from living our life at its fullest.

Nadine Vogel: Right, so you can’t even though each of these are four separate areas that you're focused on you really have to look at them like you said in tandem, they have to be fully integrated. Because, you know as an individual, you need transportation, you want to be employed you're going to need transportation you especially in covid we're using technology and if you're not healthy you're not going to be able to work so.

Vincenzo Piscopo: Exactly.

Nadine Vogel: So, it all comes together oh my gosh wow that's a lot so um I know that your full-time job now is a CEO of united spinal, but I believe in your not-so-distant past, you founded an organization called wheels of happiness foundation, and that was specifically to help people with motor disabilities, I believe, but I think it was global can you just tell us a little bit about that.

Vincenzo Piscopo: Yeah so wheels of happiness is you know my side job or I don't know how you want to call it, but yes, I founded that organization with my wife little bit after my injury and you know we did it because we realized that people with disabilities outside of the US, especially in poor countries were not living life with dignity because their disabilities right, so we are you know, we were able to meet in fact that the person that inspired me to start that nonprofit was a priest from Uganda His name was Father Thomas and father Thomas, he got injured. From a motorcycle accident and right after his accident and he you know, he was left in the road for hours until a pickup truck saw him and put him in the back of the truck took him to a hospital and three days later he was sent back home with no rehabilitation and so he spent a whole year in bed with no bowel program no bladder program or anything so not living life with dignity and that's not right, you know for us, you know as a Member of this world as Christians For those of you know, for those of our there are Christians is not right. But also, you know, one of the things that really was important for me that was a big Aha is that we were able, through the work and help of Samaritans. Father Thomas was able to be brought to the shepherd Center, he spent a month and a half at shepherd and then he was able to go back to Uganda and serve his community. So, he just needed that little push and compassion and then he was able to multiply by a million by giving back so the whole mission of the wheels of happiness is precisely that. Provide those folks that little push. That they need to live life with dignity and be able to give back to their communities and that's what we do with wheels of happiness we help many people in Venezuela, because at the country that I am from. But we also help people in Colombia in Peru in Mexico in Uganda in Kenya in Nigeria, so we all are more organization, you know we're not big at all, you know we live, because you know, thanks to the contribution and compassion of our friends and compassion of our friends and family. But with that little help that we're getting we're able to help many, many peoples and really, really packed life which you throw in your child theme and invigorating.

Nadine Vogel: I love it I think that's amazing. Beautiful. God dude you're doing some amazing stuff they're going Enzo and my understanding, we only have about a minute left, but my understanding is on a personal note, you are a wheelchair tennis player and, from what I hear you’re pretty good.

Vincenzo Piscopo: Oh, please, who told you that lie. There’s a truth and a lie right there. The truth is I do play tennis, I love it I enjoyed the lie is that I’m good. I am terrible if you see my friends and I worked at ease with me they're always frustrated with me on a plane tangent, but you know what I don't care. I love playing it I enjoyed. I never thought that you know I never played tennis that's an able body, in fact, I was a terrible athlete before I became injured, but you know through shepherd. They really inspired me and motivated to start playing tennis and it's a great sport and keeps me active it's allowed me to meet a lot of great people and I’ve done it for several years and I keep on sucking.

Norma Stanley: You’ll grow into it. How’s my friend Marguerite.

Vincenzo Piscopo: Say again.

Norma Stanley: Isn’t her name Marguerite.

Vincenzo Piscopo: Oh, Martina, Martina.

Norma Stanley: Martina. Oh okay. Martina. I always thought it was Marguerite.

Vincenzo Piscopo: Well Martina, she is she's loving the pandemic, you know because she's with the family all the time she doesn't have to do anything she sleeps, eats and sleeps.

Nadine Vogel: Well that works, but you know I did I do want to come back and I know you said you suck at wheelchair tennis but you know I’m not sure that that matters, I mean not to me anyway, because I, you don't want to see me on a tennis court but anyway, they think it ties back, though, to one of your four pillars for United spinal which is healthcare and healthcare access. Because participating in sports is part of what enables all of us to stay healthy. yeah, keep our bodies going, and I think that for people with disabilities, in particular, that is so important, whatever sport, it is, and no matter how good you are or not. The fact that you're participating, I think, is that, as a health component is a social component for all of us, not just people with disabilities.

Vincenzo Piscopo: And I totally agree and also extremely important for your mental health. Because you know it gives you a sense of community a sense of accomplishment and you know when you meet people you, you really you know challenge yourself and challenge your brain to and all that, so I definitely think it's a great thing and I’m so glad that I do it. And you know, and I, for me, because I force myself to do it and to keep on edge, because you know with you, you live, you know really very busy lives and all that, and you know and having you know, unfortunately, it takes a lot right to because you know you get into you know getting from your wheelchair to the Chinese culture and then back and then you know all that stuff it's a lot of work but it's a lot of fun work and it's completely worth it, and, and again, you know it's very important for your mental health, you know social skills and all that I’ve been able to meet amazing people you know playing tennis both able bodies and Local user on is the deal has been you know incredible and also you know, to keep your, you know, to keep you healthy, in general, you know it's been great.

Nadine Vogel: Absolutely. I cannot believe that a half hour has already flown by out of time, but then Vincenzo thank you so much for speaking with me and with Norma and with all of our listeners, we wish you the very best of luck with United spinal and in your wheelchair tennis.

Vincenzo Piscopo: Thank you. I will need that a lot.

Nadine Vogel: Maybe one day I’ll ask, and you’ll say you don’ suck anymore. So, I’d like to say thank you once again Norma, thank you for always being here with me as my co-host and we hope our listeners, today you have enjoyed another episode of disabled lives matter see you all soon.

Norma Stanley: Till next time.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates. The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advise and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast. The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or Listen Device.

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Disabled Lives Matter

Season 1, Episode 16

Co-Hosts: Nadine Vogel & Norma Stanley

Guest: Jacquelyn Thornton

Intro: [Music playing in background] Disabled Lives Matter… here we go!

Voiceover: Hello and welcome to this week’s episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley... yay!

Nadine Vogel: Hi and welcome to today's episode of disabled lives matter. I’m Nadine Vogel your co-host of this most important podcast and movement, and I am with my friend and partner in crime Norma Stanley.

NORMA STANLEY: hi everybody how you doing today.

Nadine Vogel: Norma you and I have so much fun doing these it's almost like it's not really work right.

NORMA STANLEY: I love it, I really am having a good time.

Nadine Vogel: I know and obviously not only part of it, but really all of it not, that we're not fun people, but because of our guests like the one we have today right Jacqueline Thornton so Jacqueline I, first of all welcome to the show.

Jacquelyn Thornton: Well, thank you for having me it's a pleasure being here.

Nadine Vogel: Absolutely. So, it's my understanding that you are the executive director for two sparrow’s village. I’m wondering if you could just, I know it's a nonprofit, but I wonder if you could tell us a little bit about what it does and why, and all that.

Jacquelyn Thornton: Absolutely so two sparrows’ village was founded back on May 1 actually 2017 so we've made our fourth year. And primarily really to find solutions for co-housing opportunities, neuro diversity, and housing options for individuals that are differently abled. So rather they are intellectually disabled or if they are on the autism spectrum, we wanted to create housing and home for individuals and community for lack of a better way of saying it is really to make sure folks could have Community as they age.

Nadine Vogel: That's really important. So, I'm assuming than the impetus behind it, is that you found that that just doesn't exist today.

Jacquelyn Thornton: Absolutely or let's say few and far between less than 300 in our nation.

Nadine Vogel: And where are you actually located along with the organization.

Jacquelyn Thornton: Sure, we're located in Union city, we also are hopeful to develop a 33-acre plot of land, if you will it's kind of a campground right now and it's owned by Professor shepherd Lutheran church in Fayetteville, and so we hope to be.

NORMA STANLEY: Georgia.

Jacquelyn Thornton: Georgia.

Nadine Vogel: We should be clear of Georgia, right. Nobody will know what state you're doing this from good. You said that there's only 300 in the country.

Jacquelyn Thornton: About 300 countries that are registered.

Nadine Vogel: wow, wow you know, I have to say as special needs parents, although my daughter lives independently. That scares me a bit thinking that you know if she couldn't live independently, if that limited in terms of what's out there and available like you said it's registered that you know you can count on for quality right.

Jacquelyn Thornton: Yes.

Nadine Vogel: So, did you just wake up one morning and be like this is what we gotta do we're like where did that incredible vision come from to do something like this.

Jacquelyn Thornton: So, it really came from I’ll give you just our own personal journey I’m a parent our son is 20 he's almost 21. He's in college in Leesburg Florida, but when he was diagnosed with autism spectrum disorder which was then termed Asperger’s said you know, we thought about what about his life, you know lifeline when we are no longer able to house him and care for him and support him in his journey through life. You know what next and that's what our founder Jennifer literally woke up one night her daughter is Abby and just a beautiful young woman young lady she's like she's still a kid she's 12 years old, just made 12 years old, but the reality is that you know she woke up with this inspired audible voice from God she says, and it was Matthew 10 29 31. That says take I look after the sparrows you know aren't you worth more than that, and not to worry about Abby and her future that you are to create this new housing Community called two sparrows’ village as simple as that. And it was those parents and a few thought leaders and advocates as anything happens, we know that it's the talented view that put their heads together and said we got to get this done.

Nadine Vogel: Oh my gosh. So, Norma you know you're a special needs mom you have an adult daughter that has intellectual disabilities, I mean, how do you feel about thos what's your perspective on this.

NORMA STANLEY: Well, I absolutely love the idea of it has cause what I understand about the two sparrows villages, it’s not just for the intellectual, the challenge or disabled continuants but aging constituents also so it's a possibility, as I age and as my daughter ages we can put something together. I don’t know what of mine, you know as I get older if anything happens to me, you know my daughter can't call the cops or the ambulance or anything like that so how do I, I'm a single mom and how do I do that how you know, so I definitely want to learn more about two sparrows village and what they offer, because I know that a lot of families just like me out there about the future of the child, as well as themselves as they age.

Nadine Vogel: Right now, now, in turn, let me ask this in terms of the aging population versus you know the disabled non aging population are they all together, is it separate, how does that work, what kind of support services and the same for both, different.

Jacquelyn Thornton: It's so beautiful because Christian city, which is where we are going to actually open in the fall two sparrows village cottage at Christian city. It's already a what we would consider a life plan Community supporting older adults, but they also have a village, the children's village for children that are waiting to be adopted. Right or may not ever be adopted, but they're living there in this wonderful community that support it and it just is quite natural for those IDD population. and their parents and families, to be able to live in a community that already understands. We need Community lifelong right. And the supportive services are really I think the hallmark of how we differ from other communities in that we will have adult day we will have activities, both morning and afternoon and evening. Opportunities for volunteerism at Christian city, they serve already over 1000 people live there. It’s 500 acres and it's a planned Community just would not even believe all the myriad of resources so like what they often would say is cradled to grave there's even a hospice center on site, everything in between. It's community living at its best and now they're opening their arms to families like mine, you know and like yours Norma.

Nadine Vogel: Yeah so, in terms of activities can you give us an example and lets you know let's go back a little bit, specifically the housing and you know programs of two sparrows Village so for those on the neuro diverse spectrum and those with intellectual disability, what kind of activities are we talking about.

Jacquelyn Thornton: Yeah, we're talking about truly enrichment activities, so we've already partnered with a local photographer who is going to take text on a journey of self-discovery through photography. And at the end of that we will partner with like the woodruff Center for the arts, to be able to display and having Community neighborhood parks and those laminated we are living, you know, in the age of covert so we know that was there aren't these opportunities to go to the museum like they used to be so we're going to create the museum actually in the communities that are in the surrounding areas. And it's not to spotlight the individual and their diagnosis right we don't go around saying hey you're the one with cardiac disease and you're the one, hey disabled person with diabetes, no, we don't do that right. So, it's really to show and shine that individual’s on the spectrum or with intellectual or any disability can still live life to the fullest. Can still contribute greatly and it's all about right reciprocity I think is our model is we have something to give our Community and the Community has something to give to us.

Nadine Vogel: I love it. Norma, this is this is amazing isn't it.

NORMA STANLEY: Yeah, I really love the idea, because I know too many families, you know. There's a group home, and then there’s group homes and you know, I’m hesitant, you know I know family who has people that they loved ones in group homes and not all of them, they just don’t have the understanding of what it is that we may want for our loved ones who may be sitting there, and a lot of them just don't pay attention to detail that I would like to see if my child never did something like that. So, I like the idea of what you guys are doing is to two sparrows’ village where you know, let a family member feel comfortable if they have to go out of town or take a vacation there's an opportunity for someone to take care of their child or an adult to be there still needs some caregiving. That's something that you guys offer to or will be offering.

Jacquelyn Thornton: So that is really where you would tap into the Assisted Living model that exists at Christian study what two sparrows is trying to create is Community independent living for all right, and what we're hoping to be able to achieve is to help individuals to see their own potential. Right, so our real focus is really around Community integration, abundant life, and I really mean abundant life right their full potential and inclusivity. Its seeing the joy of living with people who truly care about you and who celebrate your life and know that you have something to contribute right.

Nadine Vogel: I love that. I absolutely love that Jacqueline and I do have a question, because based on what Norma asked and what you just mentioned so. If someone's civil, is there a difference, or what is the difference between two sparrow’s village and some group, a group home and an independent living Center, what would you say.

Jacquelyn Thornton: I would say we are that independent living community that has supportive services that you haven't yet imagined.

Nadine Vogel: I love it. So, it's really like the best of both right it's coming together. That's really cool I mean I you know I know that you haven't been around all that long but I’m already thinking okay so you're going to have one of these in every state in every major city I’m already making you guys raise the roof, because I think it’s, oh my god, I get goosebumps you know as I hear you talking about it because I just know the importance and I know so many families whose kids are on waiting lists and they're, the parents are aging, and they may not have family and they're really stressing and struggling with what to do, especially after they're gone, but even while they're alive to be able to your point, you know, see the see the quality of life that their children can actually live, and I think this issue of full Community integration is key. One of the things we talked about is you know seamless integration, like in the workforce in the workplace. And how we bring people with disabilities into that so we're going to go on commercial break but when we come back I would love, if you can touch on that I’d love to touch on so how do we integrate you know employment into this and is it integrated and somehow so stay tuned for our listeners Norma and I and Jacqueline will back in just a minute.

Voiceover: And now, time for a commercial break.

COMMERCIAL BREAK

Voiceover: And now, back to our show.

Nadine Vogel: Hello everyone, this is Nadine Vogel and Norma Stanley, and we are welcoming you back to the second half of today's episode of disabled lives matter. We are speaking with Jacqueline Thornton executive director of two sparrow’s village. And this has been a really, really important conversation, because this is about living, this is about quality of life right, I mean there can’t be anything more important than that. But Jacqueline when we talk about quality of life, you know employment is important, is an important piece of you know people identify something their own value or self-worth right getting paid for job well done. And I think companies, sometimes forget that individuals with disabilities, including those on the spectrum can be those employees, so you talked earlier about full Community integration so, can you tell us how employment factors into that.

Jacquelyn Thornton: Absolutely, so the beauty of having an actual concierge on the premises and two sparrow’s villages to help individuals navigate their opportunities that are in their surrounding areas. And where we're located is really a city Center both with all types of jobs, including Amazon and Coca Cola has location that's near probably within five miles of location and what we want to do is also to integrate individuals on the campus of Christian city into job opportunities. So, when that thing goes up in the Community, we all have an opportunity to vie for it okay. Also, it gives an opportunity for training, vocational training and talent development by having those opportunities on the grounds of your community to be able to walk live and play in your community is really important. One of the opportunities that we've been exploring, and we've already started vetting out the space is extending the garden that exists at Christian city to actually have hydroponic fishing farm so that individuals can learn that particular really phenomenal to me what scientifically speaking. A way of creating a job for yourself, creating entrepreneurship for yourself, being a bell what you grow and in being able to educate the Community. Local schools around hydroponic fish farming right, so there are all these opportunities that we see that are going to actually. become born out of two sparrows’ village, because they were things that you know Christian city was thinking about, but no-one really actualized it right. So here with all these big ideas, because we know that workforce is so critically important what we want to have is a sustainable model right, sustainable model, you cannot just house we want to teach people how to fish, we want to teach people to be able to sustain themselves, and we want to teach adulting right. You know, and all of that comes with it, you know continuing education.

Nadine Vogel: Yes, I was just gonna ask about that Jacqueline you know so when you talk about adulting right is, you know continued education does it include you know life skills, you know how to balance, a checkbook had I like to do all that as well.

Jacquelyn Thornton: Absolutely and that's under our adult day program. So even if folks have a job, maybe they're only working part time oftentimes that's what's happening, that they still have enrichment beyond that and we will be teaching what we call financial resiliency will be using the model that arp actually has in place and teaching young adults and older adults, how to make financing how to plan life now on so absolutely.

Nadine Vogel: I gotta tell you need to go into colleges and teach college students. They come out they don’t have a clue.

Jacquelyn Thornton: Yeah. It's surprising, but yeah, my neighbor next door came home, one day, and his daughter was distraught she's an attorney and she was like what’s up check is like all this missing money. Good. I said all that Medicare.

Nadine Vogel: Absolutely I get it, you know my younger daughter graduated college in December, so I really get it.

Jacquelyn Thornton: Yeah. It’s like what did they teach you.

Nadine Vogel: They teach education, but I think they forget beyond the academic sometimes just the practical life skills that we all need to have, communication even communication these days, because everything is, you know how many characters on Twitter right or let me show you an image to show you what I’m talking about. Obviously, I’m old and that just confused the f*** out of me.

Jacquelyn Thornton: You’re aging and everyone’s doing it, it’s a verb, just embrace it.

Nadine Vogel: Making me crazy but let me ask this because the fact that we are trying to build this independence right, for these individuals how involved are or should be the parents, you know, because you don't want, you’re trying to probably eliminate the helicopter parent right. And that's always hard and, especially, you have a child with disabilities that's even more difficult so how do you do that, or how do you create that balance.

Jacquelyn Thornton: Sure, you know family's important we call the part of the they are part of the care partner team and essential right there is essential players in in the development of any individual human being. So, what we provide is a monthly get together with all of the care partners, as well as the residents, we would call friends. Friends of two sparrows that live with us, and we have conversation about how things are going, what are the patients are we meeting you know those smart goals for each individual and are we in fact creating community, and do people feel at home. We know that there will be a lot of anxiety and separation anxiety and just like we did when they were in kindergarten right growing up. And the same thing happens in adulthood, and we want folks to feel that they can be a part of every one of the individuals lives. But, yet they do you have to step back and let them make some of the choices and decisions for themselves. Part of what we are inspiring the individuals, especially with now zoom and other video platforms, you can always tap in you know you have facetime if you know you can always tap into see how your loved ones doing. But we are so, having great deal of support will be working with the Clark Atlanta university school of social work and their interns and that will be you know, helping the parents to kind of give up some that social service, you know management that they've been doing managing the life of that young person. Give them some autonomy to do that with a coach right. And they best of it is asking the parents to participate in some of these really fantastic events that we’ll be having. It really is supposed to be Community driven will have a fire pit in the middle and the quadrangle of the Community connecting the communities what's beautiful is that Christian city is trying to connect all of their neighborhoods through a continuous path. And help visuals to come together there'll be fitness exercise experiences and even if the adult parent I mean the parent can't you know be there in live in living color they can tap in you know virtually and organize and we can see one another and participate with one another, so there are many ways I know it's tough right sending a kid off to college, you know my first was there were a lot of you know just missing that role as a parent. I don't think that ever really goes away like my mother we're on vacation right now, but she just made me a sandwich before.

Nadine Vogel: Once a mom always a mom.

Jacquelyn Thornton: Right, so that that doesn't go away, and we don't want it to go away. But what we do need to do as parents is to be able to step back to allow for as much independence and growth as possible because one day, you know as Norma said we won't be there. Right, that's the reality of this. We won't be there and we must teach them how to fend for themselves how to. Understand that they are choices matter and how to be vocal about it.

Nadine Vogel: Right, be their own self advocates.

NORMA STANLEY: What are you getting from the Community as people learn about what you're doing, are they embracing this are they excited about it.

Jacquelyn Thornton: There is always a lot of excitement until the doors open like what did we agree to what did we sign up for. Integration is hard in any Community you think about HOA and neighborhoods when someone new moves into the Community there's a lot of chatter right some of its good chatter and some of its not so much right. Until they get to meet the human beings that walk through those thresholds, and they then become so supportive and encouraging and they want to be a part of their experience right and so that's what we look forward to. So, we're doing a lot of letting folks know hey we're coming hey we're coming and here's what we're contributing. And I asked what's helped the Community at Christian city, as well as in other municipalities that want a two sparrows’ village to come into their Community they get to see the vibrant lives, these are not individuals who are disabled, they are differently abled.

Nadine Vogel: What's interesting in hearing about this, you know and how you describe everything, and I actually visualize you know, a college campus right. I mean that’s kind of what it sounds like, and you have the center campus where everybody comes together, and you have the social and it's kind of interesting hearing about it because it, it sounds like a really cool place to be right. And I think that one of the challenges with other I’ll say programs that have tried to be like what you're doing the typical group home let's say right or even independent living Center sounds so much more clinical. Where this, right Norma, like this doesn’t, this just sounds like okay I'm gonna call it like a social being we're gonna get together and eat we're gonna go to the movies. And I think it goes back to everything you said, the very beginning Jacqueline, which is that you're building a community. A fully integrated inclusive community, and you know it's interesting because that's what you started with but I’m ending with that because that's in fact what you've done. Yes, it's amazing to me, so let me ask this if folks want to get in touch with you and for because they have a child that they'd like to inquire about that. They themselves would like to volunteer, you know give money whatever or they're listening to this and they're saying okay, I live in how do I create one, how do I put a team together to create your own use you guys as a model, how do they go about doing that.

Jacquelyn Thornton: Well, first of all let's go to our website at www.two sparrows village.org. or give me a ring 404-883-1841. I love to talk with anyone about those any of those options that you just shared, you know we are available and others are in the Community that supported us and we definitely want to reciprocate.

Nadine Vogel: Well, I think you know this clearly shows and Norma, I know you're going to agree, you know disabled lives matter. And you have really illustrated that in what you're doing because you're not creating something separate and special and different and limited. It’s integrated and when it's integrated it really shows that you're focused on inclusivity. And that people's lives, whether they have disability or not, that they do matter and that their quality-of-life matters, and so I just personally as special needs mom want to thank you for everything that you're doing. Because it touches my heart and it's something that's just oh my gosh so incredibly important nor.

NORMA STANLEY: Actually, I’m getting ready, I'm going to be doing a tour when I come back from out of town so I’m looking forward to seeing what it looks like, you know in person.

Nadine Vogel: Norma you know what, Norma in an upcoming episode, you need to share once you've gone on the tour, need you to share with our listeners what that tour was like. And what your experience was.

NORMA STANLEY: Absolutely.

Nadine Vogel: Because this is just this is amazing to keep talking about it.

Jacquelyn Thornton: I’ll have to chime in and say Norma, you get an opportunity to see the studs that they call walls, but they're not quite there yet.

NORMA STANLEY: It’s okay, I’ll be back when everything is up to.

Nadine Vogel: Yeah, you know what you can do, once you do that bring your camera maybe we can figure out how to video at some point to show our listeners. Well Jacklyn we are, we are out of time, but oh my gosh thank you again so very much and for every one of our listeners, I hope you enjoyed this episode of disabled lives matter, Norma.

NORMA STANLEY: Thank you so much, thank you for being here and yes, disabled lives matter and be blessed.

Nadine Vogel: And we'll you see you on another episode.

Jacquelyn Thornton: Bye now.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates. The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The primary purpose of this series is to educate and inform and does not constitute a disability, medical and/or other professionals advice and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast. The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or Listen to Device.

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Disabled Lives Matter

Season 1, Episode 15

Co-Hosts: Nadine Vogel & Norma Stanley

Guest: Greg Van Borssum

Intro: [Music playing in background] Disabled Lives Matter… here we go!

Voiceover: Hello and welcome to this week’s episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanely... yay!

Nadine Vogel: This is Nadine Vogel your co-host of disabled lives matter, this is not just a podcast, this is a movement and movement with my co-host Norma Stanley.

NORMA STANLEY: Hi everybody.

Nadine Vogel: Hey Norma how's it going.

NORMA STANLEY: I’m resting up from a fun Mother’s Day happy belated Mother’s Day to all the moms out there.

Nadine Vogel: Absolutely, absolutely well, we are joined today by someone I’ve now known a really long time Greg than foursome and Greg you know, whenever I think of Greg, I remember one thing he said a long time ago when he was speaking in advance of ours, he said your greatest disability is above the neck. And I remember the first time Greg that you said that I was like what the heck is he talking about, so we are joined by Greg he really talks about that and talk about mental toughness and his organization called GVB mind warriors so Greg welcome to the show.

Greg Van Borssum: Thanks for having me on board.

Nadine Vogel: So, you know because it's a podcast folks can see you, but you are one big muscle guy. But, you didn't really start out that way, did you.

Greg Van Borssum: No I was a very skinny kid and I grew up in a housing Commission area. And most of the kids in my area werel five years older than me so they were a lot bigger and used to pick on me and beat me up and bully me all the time. So, you know, it took it took a massive toll on me as a kid and I had to make that decision at 12 years of age that I’ve had enough. And I had to make a decision to change, and so it was it was a very tough decision to make because you know many times in life when it does beat you down and you quit and or you fold into it, or you give into it, or you become a lesser person than you could have been. And you know, and I remember the time it happened, I was very fortunate to have a grandmother that was quite an amazing woman. And she'd flown back in 1921 in biplanes with Hudson fish the man that went to start quantum, some of the money she gave him went towards funding the airline. And she always said to me, you have to learn to fly you know you've got you’ve got to stand up for you believe in and become the person you can be. And so, I remember being surrounded by this group of kids this time they had me up against this tree and they were trying to hit me, and I just looked left and ran home and I made a decision right, then, that I was never going to get picked on again. The next day I started martial arts, I started weight, training and I never looked back.

Nadine Vogel: And that's important because if I remember you had shared with me that I think that is how you were like kindergarten need you kicked out of school a few times right, but I think, I don’t know if it was your family or the school said, you know by 21 you need to be in prison or dead.

Greg Van Borssum: Yeah, they said if I was lucky, I’d be in prison or dead by 21. My kindergarten teacher pulled my parents aside and said I’d be the reason she quit the profession. I was kicked out of all preschools as well, actually one of my friends from primary school has actually taken over one of the preschools that I got kicked out. And we were laughing about it, the other day I haven't seen her in years. She said I run green trees now and so I remember getting thrown out of green tree. It was the fourth one that I had been thrown out of for being disruptive and I was just an energetic kid I think a lot of kids are really energetic and they don't have anywhere to let this stuff out. And it makes for a for a wild child, and I think if you get two things one you get inspirational teachers and people around you that actually give a rat's backside about you, and you have a community that instills better qualities in a kid then you've got, you've got somebody to let that stuff out I think we've looked, we’ve sold ourselves short these days, with that stuff because we've given in to the Xbox’s, the phones and all the other stuff that we spend our time on and we don't give our kids the attention they deserve, and I think. And the kids are losing out this whole generations lost it’s focus. Because they don't understand how to get their focus because we've given them so many offerings from Facebook to snapchat to Instagram to Twitter to email to Xbox to PlayStation to Netflix you name it they've got so many things to focus this attention on that you can't hone it, hone their attention and what I said to my son all the time, and my daughter my daughter mason is that you if you spearhead your focus and focus on the one thing you will make it and masons just proved that he’s 13 years of age, his team is tap team, mason's a tapper, taught by the top dogs and his tap team just won the overall national championships and you know at 13 and he's become an amazing speaker and my daughter's doing amazing things and because I’ve taught them and my wife and I’ve taught them to spearhead their focus. And it's important thing that kids missing these days and it's having a massive effect up top in their brains.

Nadine Vogel: Yeah, and we're gonna we're gonna talk more about that because this this issue of what's going on in our heads and our mental health is really, really something else, so I do want to come back to that. So, let's go back you 16 you decided, enough is enough, and I think you said you had two or three goals that you just put out there day one.

Greg Van Borssum: I had, I had a number of things I used to spread out to my mother, so one I wanted to be big and strong. And also, to be heroes I always admired the phantom and the phantom had these amazing skills, because he was a human being in the comic book series, he was a really good pistol shooter and he's a really good fighter. And he was meant to be the ghost that walks, and so I wanted to be like that I wanted to be this guy that can really fight could really handle himself who was big and strong and could shoot. And so, all these things were in my head the whole time as a child, and I wanted to make movies, so I had this whole amazing imagination, that I wanted to use and. So, I wanted to make movies, and so, and I really wanted to be a champion, because my father, being a world champion kayaker and I wanted to be like that, and so I just thought well if I’m going to do something I’m going to do it all the way. And I was actually 13 when I decided this fully because when I took on weight training, because I was so skinny, I was at the gym and I found a magazine that was totally dedicated to the sport of bodybuilding. And I found a photograph in that magazine of a man called Bob Paris and he just won the US nationals. And I was at my friend's place at the time on the floor reading these magazines and I found that photograph and I just jumped up, I was so excited and said that is what I’m going to do I’m going to win the national championships. My friend’s parents looked at the photo Bob Paris, it was like a Hulk looked at me and laughing their heads off and to the point that I left their house and never went back. And I went back to the gym, and I sat on the bench I looked up at these photos of these champions of the wall like Arnold Schwarzenegger, Lou Ferrigno. And thought you know what I wonder what they did to get where they got and I thought you know I’m going to do it, and I said I’m going to show everybody what I can do what I can be. And I went at it 100% I lived it breathed that and I immersed myself in it and age 16 I did my first show I didn't place it in, I didn’t place in the show. But I kept working at it and eventually age 19 you know I won the teenage nationals, and I won the overall nationals at 20 and went pro at 20 as the world's youngest pro natural bodybuilder. So yeah, it's all doable and I was a skinny kid, and I didn't know anybody, I taught myself everything from the ground up I just had that much hatred to what I was like as a person, and that much desire to change what I was that nothing was going to stop me getting there.

Nadine Vogel: And I think that, and Norma I know you'll agree, you know, for all of our listeners, especially you know those who have disabilities, it goes to show you know if you put your mind to it, yes, there will be limitations, so it's based on what your body allows you to do. But there's rarely limitations that your mind can't take on right.

Greg Van Borssum: And here's my thing on that and I’ve got a really big point on that is that. Okay, and I’ve got lots of injuries in my youth and doing stunts and fights and all that stuff and I literally just almost smashed my ankle tonight and I’ve had lots of fractured spines I’ve enjoyed myself had snap the tendons up my legs, I had to learn how to walk again, I mean I’ve been through levels of disability. And the biggest thing I learned from all of this, and this is something I’ve learned for a lot of people who have physical impediments, and I don't call it disabilities, I think that the disability is about the neck. Is that when you can't do something, you have to say yourself what can I still do. What can I do, you focus on that you know I know now because my knees are smashed and all the things I’ve done that I’ll never win the Olympic hundred medal record so I go well I can't do that, and when I when I had you know in 2016 when I suffered a major stroke training to climb Everest. You know I had to go well, I can't do that now what but what can I do so, I started writing a book and I started developing other things, and so, if you can re-channel your thinking process into other areas. You never fall into that level of depression and negativity because you're always thinking forward to the next thing.

Nadine Vogel: Right, right.

NORMA STANLEY: Absolutely, the mind is a powerful thing, and we really have to focus on, you know sharing and obtaining and absorbing those positive thoughts, because that is really what makes us. You know the scripture says guard your mind with all your heart because that’s where everything lies. You know, it controls your body control, it controls so much, we have to very, that’s why mental health is so important.

Greg Van Borssum: You can go right there for genetics and all kinds of stuff about us know, because our brain is refractory you know mechanism we get up in the morning, thinking about the past all the time. And it has a massive effect and a future if we're living in a bad part, it's like ptsd. The amount of friends of mine that I’ve helped in the special forces and other areas in my life who suffer ptsd, now what ptsd does it puts that that thinking of the situation happened at the forefront of your brain. And because of that it's all you think about and then you dwell on that, and then you suffer because of it, and then your life changes, and you can lose your life because of it. So, you have to change that, and it takes a lot of work to change that stuff. And ysou have to get up and alter what you do your processes, if you get up in the morning and have coffee and this and that and saying. change it start doing something different and start writing in a journal I think journaling is one of the most amazing strengths a person can have because it gives you a thought process, thinking forward, it gives you a structure and you start putting stuff in place, you know my two greatest skills to this day and people think I joke when talking about this what I’m talking about this is naivety and stupidity. You know I’m too naive to know I can't do it too stupid to stop once I get started. Now, like even my speaker’s academy I started, I said to my wife, we have to teach these local kids how to speak there's no confidence they're having umming and aring they stay stunned when they when they get up to speak, they cry and said let's do it, so I started the next day I started it and went okay let's advertise it and put it at the local community and do it, and now it keeps selling out into the point now it's gotten such a great REP from the Community, I have major businesspeople out here who are now wanting to fund scholarship programs for the kids to do it. Because it's making such a change, and I just think you just start stuff you'll work out the bugs on the way, and you. You figure it out and I don't care what physical disability or impediment you have there's always a way to move forward in something. You know, one of the great interviews that you know, but people I got to speak to was in Florida with you guys when I when we were down there, and I was talking to one of the one of the fellows they had lost both arms and both legs overnight for meningococcal and you know, he had such the most amazing outlook on life and since losing that he goes, you had to learn to do everything again. And I went from a kid it was a soccer player and a guitarist suddenly now can't brush my teeth. I can't do this, I have to learn this I’ve got to work out how to use these legs and I’m going to get I’ve got a, and the thinking processes that he had to put in place, there’s a man named pedra menta and I’ve got it on my page somewhere Pedro’s interview. And just hearing the way he spoke and what he talked about and how he trained his mind to work even seasonally was a beautiful thing to listen to and I don't think that’s, and he became an engineer from that you know he's taken all these losses and move forward and become something wonderful. And I just I just don't think there's a I understand people have physical impediments I wrote, I understand that 100% I have friends that are ex-military that have lost their limbs and lost everything. And, but they still think forward so they what can they do my friend Trevor walk and he was a top black hole couple of pilots went down and Afghanistan’s some people on you got killed in the accident, he broke his back he's never walked again, even though he wants to. Instead of that he got into the shooting sports on competitive pistol shooter. And now, he runs events and now runs a bunch of people in wheelchairs and runs events for people that are missing body parts and then it's become this beautiful amazingly strong, powerful event and everyone supports it. Because they’re always thinking forward you can't dwell on what you've lost you gotta fight for what you got.

Nadine Vogel: Well and it's also you know and Norma you and I have talked about this that you know it's not what happens to you in life it's what to do with it that really counts, right. That makes that difference and so we're going to go to commercial break, but when we come back Greg I’d love for you to share with us, I remember you taught me something about the warriors code and living by the warriors code and I think that most people don't know what that is and how, especially from a mental health standpoint, it can really make a difference, so stay tuned so listeners will be back in just a minute.

Voiceover: And now, time for a commercial break.

COMMERCIAL BREAK

Voiceover: And now, back to our show.

Nadine Vogel: Hello, and welcome back to disabled lives matters podcast and movement of course this is Nadine Vogel and I’m joined by Norma Stanley. So we have the amazing incredible Greg Dan Borssum with us today, and we are talking about mental toughness and just disability of you know, the neck up. And what really can be done if you put your mind to it, and one of the things we started on just before we broke for commercial was something that Greg you had talked about in the past that I remember very, very vividly, which is about thankful the warriors code and that you spent a lot of time kind of figuring out what that was and how to apply it so could you share that.

Greg Van Borssum: I can well it's, it's funny because we focus so much and I learned this the hard way, because when I was at the top of my professional sort of bodybuilding career. And I was the biggest externally and most strong and powerful looking that I’ve ever been I was most self-conscious of most afraid that I’d ever been. And I realized, I had to step away from that and get back to what was inside, because I had to re-ground myself. And all my user martial art training taught me that there's so much more to learn and so much more to do, which is the reason why, if you look at a black belt a true black, not the monkeys you see run around with like black belts on these days. When you see a true black belt, the belt is actually made by charades people to make them that the belt is made with your name on it before they actually make the belt and they wrap the black stuff around the actual white belt, so the longer you've been training, the more the black fades away. And the white reveals, which means you're always a beginner and you're always learning so, the more you think you know the less you know and the journey continues, and I think that's what we've lost we keep this level of entitlement this level of you know we don't need to work, the things and we have an expectation, now we aren’t prepared to go the hard yards, and I think we've fallen into victim status with a lot of things today. Everyone’s a victim everyone's suffering and everything it's like you know what we came from warriors we came from hunter and gatherers we came from people that have fought for generations and generations survived just to be here. We are all so fortunate to just be sitting here today. To have life is so much amazing more amazing than people that go, I just want to end it it's like you know what there's so much to live for people just don't see the positives that are out there. So, I had to study deeply inside and find out what that all was about and what the warriors sort of code and I don't really, I don't call it a code it's a warrior mindset. How do I tap the problem, how do I look for the solution, how do I search for the opening it's like when you watch kids fighting with swords, they hit sword on sword. When in truth sword work, you're meant to be looking for the opening. It’s like why people have car crashes they look at the car they're going to hit my go straight into it rather looking for the opening of the side of the vehicle, the square of the vehicle around it. And my way of thinking is to always find the opening, you know something doesn't work, how do you find a way that does toys away before there's always a way that to find it find an answer. And I learned everything firsthand because I’m self-taught and all the things I’ve done, I never I never went to school for filmmaking I’m self-taught I was a carpenter, the only thing I could go to school for was carpentry. I was a carpenter and hated being a carpenter, so I taught myself at night how to make movies, and you make all the mistakes but if you have what I call passion through pragmatism or pragmatism through passion. You know if you love something enough to be obsessed by you will find the way and you'll find discipline and discipline is just means basically that you get your bum in gear every single morning and you do it, no matter how you feel. You know, I think every one of us has a little voice on either shoulder every morning we wake up and you can either sit up and listen to the one that tells you to lie back down and forget about it. When you guys get up and it's a battle you go to win every single day, and somedays you get up regardless we're losing that fight, and you go, you know what I’ve got to move forward anyway.

Nadine Vogel: Right

Greg Van Borssum: Because plenty of times in your life and I don't care what you suffer from this plenty of times we all go through stuff again what's the point, unless you the light the end of the tunnel. And you’ve got to get out of your own way. That’s the discipline that’s the warrior spirit, where you go I don't give a rat's backside if there's 1000 people in front, Ii'm going to fight through those thousand people to get to the goal I’ve got to get to that's the mindset when you get back to because we all have that and the biggest thing we've forgotten is that part of us there's so much more we have and I pushed my students to the hills. Everyone on my march last year, I had kids in tears tonight. Because I work them so hard, though there are tears but guess what when they finished doing the hundred push-ups at age eight years of age when they finished 100 sit ups and the hundred squat kicks in their stuff. They run out until their parents, mom, dad, guess what I just did 100 of this and 100 this they're so proud. And I told them I said, your parents can do this. And suddenly this kids building pride and if they worked with the tears there going to be tough, because I told them, life's going to be tough and I tell them is going to be roughly get out there, and you need to be prepared for it, so, if I can push you and make you work past what you think your barriers are and find new barriers and break them and break the next ones. You're going to find that warrior spirit that you realize, you are much stronger than you ever dreamed you were and you're going to fight for the next thing you go find people won't be able to knock you down you'll always get back to your fate and always go another route.

Nadine Vogel: Right, absolutely.

NORMA STANLEY: Absolutely, that is so true, one of the things that I learned as a mother of a daughter with intellectual and physical disabilities is that you know I learned up need to take care of her, and in doing so, I learned that you know those barriers that I thought were there actually I found a way around them, and you have to find a way around all the barriers. Because they’re going to be there you just got underway, but you find a way, make a way.

Greg Van Borssum: It's from the great leaders of all you know they talked about that they talk about you know, make a way, find a way to do something, you find the way you will find a way. If you're if you really have a want to get somewhere, you will make it happen and if you don't know how long it's going to take this as a one of the great lessons I learned, is it. Everything I’ve ever done in my life, and I’ve been fortunate to take a lot of things to a global level. And it's been through hard work, but everything takes he is the shortest thing I ever did I think was my public speaking accreditation that took me five years. And that was everyday, people don't see the work you do. You want to be great at something it's always what I say to my students it's the work you do when no one else is watching that makes a difference. I’ve sat in my studio every night and I practiced and I practiced for hours and hours and hours of free speaking recording watching speakers, I never stopped and I’m very obsessive when I do something and I made it to that, but it was still five years. My pistol shooting World Championship was seven years, my bodybuilding was eight years, my getting the movie for 15 years it's like there's no promise there's no guarantee of success there's no money. You just got to keep going with the hope and heart in yourself that you have what it takes to make the faith that you've got the skills and you'll get the mustard inside yourself to keep fighting forward, no matter what happens. And people are quitting too fast, these days, and you know I’d prefer to I prefer to keep going to my life and not get there and then realize that the end that it was still a great journey. Think, I would have been wonder if I could have. Because you never know what's around the next corner. I’ve made it to the end of and go well, I never thought I get it like I failed in my accreditation three times you know or twice before with the third one, but that's a year between each one. You know the first one that video wasn't good enough, the second one, the stage was a stuff up, and so you keep coming back, and you can either end everyone goes to the moment of getting hung up on us stepping, I’m quitting this, it sucks you know you everyone goes through that. But then. two seconds okay all right I’m booking and do it again. Because you can't quit on yourself but there's one of those things that you if it gets ingrained in you, you’ll quit forever and you cannot do that because I tell people everything I’m known for now as an adult the strength, the martial arts, the filmmaking in the speaking we're all my greatest fears as a child.

Nadine Vogel: No, absolutely.

Greg Van Borssum: Let it go towards your fears you got to put your face in the fire and you got to be willing to take what happens.

NORMA STANLEY: Hear the fear and do it anyway.

Nadine Vogel: That's right. Well Greg you know, you and I we've talked a lot about you know folks who can't see that they can't get past some of this and they tried to die by suicide. Hopefully, not successfully, but I know that you've done a lot of work in that space, so you know what's the message you know, obviously it is the message to them as well, what you're saying, but if they can't get themselves to see through that day, what do they do.

Greg Van Borssum: The hardest thing with mental health and suicide is that the amount of people that feel alone. And when you're suffering and I’ve been there, I know how it feels and when you when you're going through a problem, especially you know, especially men we don’t talk about things we keep it all inside. When you're going through a problem you feel like it's just you and you feel like no one understands and you feel like you're going to be a burden and that you're not worthy and you're not you're not valuable and what I truly believe what causes suicide isn't one thing I think it's a whole heap of events thrown together, so you lose your job missing your wife leaves your husband leaves you then you lose your home and you know you lose your money and it goes bing bing bing bing and I equated to a martial arts when I get someone in a very strong joint lock. So if I get you an unfair wrist lock, for example, and I do it very slowly. When I do it slowly, what actually happens is you get strengthened you get stronger you get tougher you hold up and suddenly you're fighting back and hit me. But if I do quickly the human body has a natural cut off chemical that releases to make you drop to stop you getting injured. And I think that's what happens to us mentally it becomes too much pain in a short period of time, and we just go, you know what's the point of this. Because we found out the suicide is very impulsive so when all the Suicide Prevention bridges got the covers on them over here in Australia, the suicide rate on bridges went down by 90%. Because people when they go up, I can't do it well I’ll go home and maybe I’ll do it tomorrow, and tomorrow might be another day a better day, where things aren't so bad and. And the biggest thing is for people is when someone is struggling everybody knows their friends. But there's this small sign that people miss and I always talk about these signs that they're very physical you know when someone becomes distant when someone becomes more disheveled their work they take extra sick days they turn up late, they're drinking more that they're sitting there smoking 25 cigarettes telling you they're fine like if you see these things reach in and help them out because people won't reach out for help. You know people can reach out and call me and no one's ever going to call you jam the phone throw it up your backside because no one's ever going to ring it, you have to reach in and help them out and it's much better to do face to face. Because people love face to face and that one minute, how do you actually give someone that releases that oxytocin after one minute hug and does actually physically clinically proven to make you feel better releases an amazing chemical in the body which just makes you feel joy and you also know, someone cares. You can do that do a zoom call if you can't do that do a phone call do something, but always try and make it a physical condition it's really important and let people know they're not alone. When I did a speech in Colorado a couple of years back, and I was couple of thousand people in the audience, and I’ve got them all to shut their eyes. I said I want you to raise your hand if you've ever felt days didn't want to get up felt there was no hope in life if you've been directly affected by suicide, I said raise your hands. Every single hand went up I said now open your eyes and look around, I said your never alone. Everyone's going through something everyone's going through something or they're coming out of something and everyone understands. So don't be afraid to say I’m having a hard time a little thing about raising hands up and saying you know I’m struggling help me. It's one and we can't be worried about being judged by people and if people are judging that they're not good people anyway.

Nadine Vogel: That's for sure.

Greg Van Borssum: We have to be more human; I think, human beings were missing the humanity but, at the moment. You know we're definitely beings but we're not human and we've stepped away from what we should be, we need to get back to the fact of being humanity and community like community helps each other.

Nadine Vogel: Right.

Greg Van Borssum: And I did a wonderful speaking event, with a friend of mine in the states a few years back when we did this community one Mississippi and so many people came out and so many people embraced each other, and everyone got enough and that was community. We need more of that we need that back because we were really separating each other, and we need to fight to get their back.

Nadine Vogel: Well, and especially now, you know in covid, we've been at this covid thing for over a year. And you know you said something about you know people not feeling alone, you know there's other people here, but I think that during covid people are feeling very alone. And feeling, you know isolation, especially if they're working from home and we're finding that more and more people who prior to covid did not say that they had any mental health issues. Are feeling like they do now and then I was reading a statistic, actually from the White House yesterday that as many as 30% of folks who have had covid are going to be long haulers. Meaning that those you know the symptoms are going to last for quite a long time, and that when they do go back to the workplace they're going to need even more in terms of accommodations and things like that so Greg talk about that, I mean you know covid is real and everybody is dealing with it in different ways, but you know if you have you’re a long hauler and how is this going to impact them.

Greg Van Borssum: And look it’s going to affect everyone differently depending on the mental state before you went into an afterwards, but also how to fix it financially, you know you take the money out of the situation. You know you strip it away from something you've increased that situation tenfold. Because the amount of stress and pressure that brings to the life, now that you know you know yourself, we've all had those months we go geez am I going to make them that bill. And, and when your money's cut and like I don't know what's happening states over the financial stuff, but that stuff all finished here for people, you know so all the all the government handouts finished. And so, people that run this thing called shopkeeper it's stopped, so I still know there's more people that are going to lose their jobs and other things so there’s more to come and it's all that side of it it's going to be worse, I think, then the covid crisis, I think, because the crisis is a financial crisis more than anything that the people will handle I think the medical side of things we've got a our system at here medical wise is very different from the US with a very big public system that people don't have to pay for medical you know, to be seen medically. I know in the states is a different animal and so we have that at least but. You know I think financially, people are still going to struggle, I think that's going to be the biggest downfall that's going to play into depression and there's been a plan to anxiety and that's going to play the all the other things and that's a very quick to cascade I mean. I call the vortex of negativity where you start off here and suddenly you go down, then it becomes a very slippery slope, and that last pit piece of the puzzle is very compacted. You know you go for somebody who's been off today and then tomorrow they're gone. And they don't necessarily have to make a plan people go they've had met know that people sometimes just impulsively do stuff and we have to, if they're our friends, and we think they're different and we think there's something happening, we think they're showing signs of depression or anxiety and you've got to reach in and talk to them. And let them know you're there for them with them and the three big words, we need to use with it with everybody we're friends with us, we end together. Because when we are going through an issue mentally, we feel it's me it's me I’m alone but it's not a few reaching ago you have an ally, you have a friend. We will get through this together, together will make this happen, we will get help some of you've got a friend that you know you can trust them together you feel like there's something to do with.

Nadine Vogel: Well, I think that's you know we're out of time, so, unfortunately, but I think that's a great way to end this right us, we and together, I love that so Greg I know that you speak globally, how can folks get in touch with you, if they'd like to hear more from you have their companies hear more from you, what's the best way to engage.

Greg Van Borssum: So my website is gvbmindwarriors.com.au, and that has everything on it from my speaking with people want me to speak to my martial law school to my speakers academy to all the stuff we do. All my YouTube stuffs on there, you can directly click on that my mind worry minutes and things and yeah we're really trying to push up the ante to help people move forward and I think it's if we get them young and the reason I started the martial arts school speakers academy see if I can help kids young they don't have to fix them when they're broken and the older. You know and biggest thing for adults and two if you think you got this release you don't get mental disabilities are anything so step up and find a way find a way to move forward to get towards where you want to go and remember midlife is now 40 years. everyone's forgotten that we all wake up and we think we're dead at 40 now we got 40 more years of stuff to do so, keep achieving keep working to what strains and I don't care if its tiny little things keep moving forward that's what it's all about and enjoy the journey because it's a fun one.

Nadine Vogel: What a great way to end, Norma oh my gosh this is has been such an amazing session hasn’t it.

NORMA STANLEY: Speaking my language here.

Nadine Vogel: Well, ladies and gentlemen, I hope you enjoyed this podcast with Greg Van Borssum, and my co-host Norma Stanley and we will see you next time on disabled lives matter bye-bye everybody.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Disabled Lives Matter

Season 1, Episode 14

Co-Hosts: Nadine Vogel & Norma Stanley

Guest: Dr. Donna Walton

Intro: [Music playing in background] Disabled Lives Matter… here we go!

Voiceover: Hello and welcome to this week’s episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanely... yay!

Nadine Vogel: Hello, bello, hello everyone, welcome to this episode of disabled lives matter, this is more than just a podcast, it is a movement and even bigger one thanks to my co-host Norma Stanley. Say hey Norma.

Norma Stanley: Hey Everybody.

Nadine Vogel: And if I didn't tell you this is Nadine Vogel. Today we are so excited because it's not about me it's not about Norma, it is about Dr Donna Walton and Donna, welcome to the show we're so excited to have you.

Dr. Donna R Walton: I am so glad to be here, thank you for inviting me.

Nadine Vogel: Absolutely, you know, like we were talking before you, and I hadn't talked in a really long time. But the one thing that always stuck out with me and I think still does is that you have this power this power to reinvent yourself to help others reinvent right not in spite of what happens them but because of it, I think you were diagnosed with disability around I think was right at 1976.

Dr. Donna R Walton: So yeah so 1976 I was 18 years old and my whole life sort of turned upside down when I got the diagnosis of osteosarcoma. And that resulted in the left amputation of my left leg above the knee, and I think that that's the journey that's when it all began in terms of reinvention. Because if you really think about it, I was 18 years old pre adult hood if you if you will and so I was on the cusp of not even have my own identity of even just defining what my own my identity or I would say my identity was in flux at that time. And so the reinvention came when I started off, I wanted to be a performer I mean, I still am a performer, but that was my dream I mean you could not tell me, I was not going to be in Hollywood and you know I wanted to be an actress and I wanted to just I want to be a performer, that that was where my heart was and that's what I trained to do that's what I went off to school to become. And you know when life serves you, you know, lemons you make lemonade and or you may sometimes have to take a new direction. So fate had it so that essentially I’m still a performer but I use the classic, I sort of transition from my vision, my vision sort of morphed into thinking that I was going to be in Hollywood on stage, but in fact my stage was my classroom and my students were audience. And you know that's where my sort of first reinvention became because I transitioned from being this performing arts actor or performer to being an educator. Using the classroom, you know teaching school and then because of my own disability I sort of reinvented again to learn and to teach special education. And so, because I never wanted, little do my students know they were my experiment, because I was learning about myself through them. In terms of what disability look like, I mean I didn't know. It was my you know first year, if you will encountering of living with one leg and so you know from there you know it seems like I kind of came into this this knowing of myself, the more that I sort of learned about who I was, gained my confidence, because of course my confidence and self-esteem oh that was shattered so reinventing had to be I had to sort of reinvent, retool, reshape who I was now as a woman, a black woman with a disability and so that has taken on many, many forms, so today I am now wow I wear many hats I’m a writer I’m you know I’m an actor I’m you know Disability inclusionist and I'm a founder and director of two major organizations that all sort of Center around living helping people live their life passionately. Redefining what disability looks like you know, and so you know that that's where I am you know it's like reinvention retool rebrand and I think I’ve done it so many times I’ve changed jobs okay I tell folks I have had more jobs I think the average individual because, again, you know, I was on this journey of finding, who I was so I mean I get it I’m like nah, this is not me I don't want to do this and I’ll change the job or sometimes I even got fired from jobs, you know um because I wasn't a good fit I wasn't a good fit it was a square peg in a round hole sometimes. So yeah, yeah, I hope that gave you some insight on the real stuff.

Nadine Vogel: Absolutely, and you know it's funny because I think when we first met your organization was leg talk.

Dr. Donna R Walton: Yes, and it still is, yep.

Nadine Vogel: That was one of the organizations right and that's focused is, if I remember correctly, I’m going back now lot of years.

Dr. Donna R Walton: You’re good.

Nadine Vogel: Focus on like empowerment, how to empower yourselves and others.

Dr. Donna R Walton: Yes. So, leg talk is lessons of empowerment for achieving goals and greatness, and that is correct it basically serves as a platform for teaching others how to work and live passionately. And so, and I sort of had another piece of it that I did the disability awareness and accommodation and sort of consulting with organizations.

Nadine Vogel: Right no, I remember that and then your other organization is divas with disability. Now I love that name.

Dr. Donna R Walton: Oh yes. That's the star organization that and I would say that that really has really culminated. Everything that I’ve done over my light time to now because it ain't over, has culminated to the divas with disabilities project because it is a reflection of what I wanted to see life be. I mean what I wanted to society to visualize people with disabilities. And it just so happens that I happen to be a black woman, I happen to live with a disability, and I happen to know how what it looks like not to be included. And I found out that I wasn't the only one. So, diva sort of started off as this digital campaign we started out on Facebook as just a way of coalescing around topics chatting and then it just grew it because there were so many women with the same lived experience and saying you know, passion and interest in ensuring that their lives are seen. Not only you know just on the big screen, you know it desires to become actors and performers, so now the mission has more to amplify the images of black and brown women with visible disabilities and promoting these women on various media platforms, so its global we are a global organization of divas it’s dynamic illuminating achieving sister and you know, and so we embrace all of that we live by our core values of social justice and inclusion and equity and body image. You know, all of this body image transformation, all of these things and dynamic illuminated victorious achieving sister, I may have misspelled it, but I had to go back. Because victorious was important and I noticed I said, I'm like I don't remember hearing victorious. So that's how so that's diva and our vision, clearly, is just to see more divas if you will.

Nadine Vogel: Right.

Dr. Donna R Walton: Reflected throughout Television, film, advertising, we need to be there, you know, we want to be the change. We want to be that change. And that was pretty much my mantra I kept saying well you know we're not on TV we're not in film. So, I’m like okay, well then let's do it lets be that.

Nadine Vogel: Absolutely, absolutely, well, you know I may not be in the black or brown community but let me just tell you I am a diva.

Dr. Donna R Walton: And you don't have to be, but you know you're an ally.

Nadine Vogel: Absolutely, you know Norma and I we have adult daughters with disabilities and so Norma, I mean, how do you feel about this.

NORMA STANLEY: I absolutely love it and one of the things that I really love about it is especially in the advertising and marketing arena, where you know, the general market advertising agencies or companies, they tend to say you know where all the advertisers or the marketing people are who are of color, we can’t find them. We can say yes, you can, if you really look. And so, same thing with people with disabilities who they can include in their advertising and marketing strategies, if you really want to find them, you can find them.

Dr. Donna R Walton: Well absolutely but they're leaving money on the table. We are consumers, you know I don't know how many times I have to sit you know and tell the message you know people with disabilities are consumers. We do, you know we're integrated in society. So, wherever society is we are too right, I mean it doesn't make us absent from going to the grocery store, I mean living life, transportation.

NORMA STANLEY: Doing what everybody else does.

Nadine Vogel: Absolutely. You know, in the school system they call it mainstreaming. It's inclusive it's not just about you know diversity, so let me ask you this if I may. I think sometimes it's the words that people use and the images that get developed as a result of those words and when I think about is beauty right so talk to us about what you believe defines beauty and what maybe is getting in the way of that.

Dr. Donna R Walton: Good question, and you know and the hard part and well, not the hard part, but the piece just said is the piece that such a conflict defining you know we have to remove ourselves away from always having things neatly placed in a box with a definition. So, beauty extends or transcends beyond body, you know, the way we define beauty, the way I define beauty, is that it transcends beyond our body parts. You know, beauty is different beauty, is not the same, you know it's, it encompasses everything about a human being, that exists, you know that brings that person to the space that they live and show up, right. If you show up in that space to me, your beautiful right because you're there you're there yeah of course society places all the emphasis on what. You know the nose, your ears, you know where things are neatly placed you know symmetrically and your body shape all these things, but with disability, I have to look at, I have to look at flipping that, the paradigm of beauty on its head, because we can no longer look that way now that I want to bring up this organization. Wonderful, a friend of mine as well who runs this organization called positive exposures. And he was a well renowned photographer, and he took his mission and now he was photographing all these beautiful women and blah blah blah, and he just got he said he got tired of it, and he now takes photographs of all of these medical children with medical conditions and uses them to bring a face to these children and other people. He highlights people with Albinism.

Nadine Vogel: Albinism.

Dr. Donna R Walton: Yeah, you know all of these different conditions if you will that society wants to cast aside. These things, these unique characteristics.

NORMA STANLEY: Absolutely, I like to call it perfectly imperfect.

Nadine Vogel: Ah, I like that.

Dr. Donna R Walton: I like that. I like that, so you know Nadine, in terms of defining you know it's like there's not a there's not a definition for it, you know and because I think once you start putting placing definition on it then that's what you get into people having to meet the standards we want to remove so that people have to meet a standard you show up you're beautiful and then we need to really use that word, embrace that word more. You know, because sometimes people are a little tentative about calling someone beautiful right because they're like no they because this image of what they have seen beauty to look like.

Nadine Vogel: Right, absolutely. And Norma, you know Sierra, your daughter, my daughter they've modeled right.

NORMA STANLEY: That's right.

Nadine Vogel: But there’s a but here though. I don't know about Sierra but for Gretchen the modeling has been within fashion shows, although during fashion week in New York, but fashion shows for people with disability, we have to get passed that. We have to get into all the fashion shows.

NORMA STANLEY: And that's yeah you're right and that's one of the things that I want to make sure happens to my daughter has been included in the ones with the typical models, as well as not just for, and that was something the designer who we tend to be a part of it shows she insists on it, she wants the typical models and those would you know special needs and disabilities, all in the same show, showcasing anybody's beauty. And you know the beauty this in each individual and that's what we need to get more of we don't feel nothing bad.

Dr. Donna R Walton: Yeah, and there are some organizations out, you know you know, to the credit of the of the organizations that do sort of a highlight and emphasize beauty across the spectrum, if you will, right. I kudos to them, I mean, and we can talk more about some of those organizations, fashion runway is one. There are number of them, so if you want some references.

NORMA STANLEY: It’s definitely growing.

Nadine Vogel: Well, so my question is and we're going to have to take commercial break but when we come back from commercial Donna what I’d like to talk about is, you know what you said right. We don't want to paint people into a box having these very you know clear definitions, but I’m wondering if then you can talk about how either having those defined spaces, rightly or wrongly, is impacting the inclusion of black and brown women, girls with disabilities. In arts, in entertainment right, how is that all coming together, or is it not and is that part of the problem right so let's go to commercial break and we will be back in just a minute with my co-host Norma Stanley and the incomparable Donna Walter. Thank you.

Voiceover: And now, time for a commercial break.

COMMERCIAL BREAK: Many things have changed due to COVID-19 but what has not changed is the obligation to ensure you’re built environment is safe and fully accessible what was considered accessible and safe for someone with a disability prior to the pandemic may have changed. Especially as it relates to the physical space emergency evacuation the EEOC’s definition of a direct threat and more. What this means is that having a physical barrier universal design assessment is more important than ever Springport innovative physical barrier universal design team is now offering this service not only in person but also utilizing a virtual model a self-service model or model that serves as a hybrid between two don’t delay hire Springboard to conduct your assessment today contact us at info@consultspringboard.com or visit our website at www.consultspringboard.com

Voiceover: And now, back to our show.

Nadine Vogel: All right, ladies and gentlemen, welcome back to tonight's episode of disabled lives matter. Norma and I are talking with Donna Walton and before we went to commercial, I should say, Dr Donna Walton. Before we went to commercial, I was asking Donna to talk a little bit about you know, earlier we were talking about beauty different definition of beauty shouldn't be defined not be defined, but I’m wondering how those definitions, the ways we put people into boxes impact if it impacts, the inclusion of black and brown women and girls with disabilities in arts and entertainment. So intersectionality of disability and race and gender. How does that all come together for you.

Dr. Donna R Walton: It does it, you know it does play a significant role well, first of all, we have to move beyond that people with disabilities are not a monolith. So once we get the first of all get that on a table.

Nadine Vogel: Right.

Dr. Donna R Walton: And so, once we get that then we have to also realize that we have to acknowledge. We have to acknowledge, as you mentioned intersectionality, we have to acknowledge the intersection of identities and that each of these identities bring a unique experience, but they also can create oppression so they you know acknowledgement that everyone has their own unique experiences of just you know of discrimination and oppression. And we have must consider everything right and anything that can marginalize people and that's unfortunately what in a, I guess systems or organizations that tend to say, I want to include and make these individuals are part of leave out. Because they want to say oh, we want, we want actors with disabilities, but you know what hey a black actor may show up with a disability, does that person still count because that's what we're seeing in Hollywood you have many white males with disabilities, that will play a role, before anyone else will play a role right, I mean you, you don't dare oh it's like less than 2% I mean it's really a logo.

Nadine Vogel: Is the focus here, gender, race, what do you think.

Dr. Donna R Walton: And that's the thing you never know I look I live with this. People of color I would say, I know I do, live with this triple line or triple jeopardy, as I call it right. You know, being black female disabled okay now and you never know which of those identity markers are working against you, you never know, and I give an example. In a little story quickly applied for this job my first broadcasting job I was ready you couldn't tell me; I was not a bad system to apply for this position. I was paired and so, but I get in there, and you know as pass the writing tests and you know do all these things sit down speak with the interviewer and the first thing, he says to me is how would you run to get the story, you know. This is pre-Ada, of course, but regardless of it still was a question, and so, and then, and of course you can imagine, I didn't get that job. Okay now, but then other situations I go in, and I don't get job you know that you're just checking the boxes everywhere, but you don't get the job. You leave out of that room as a colored girl I leave out of that room thinking okay, was it my race, you know was it my disability, you know is it because I’m a woman. What is it that that kept me from that space? Well, it's the intersection of all of them is the triple jeopardy that it could be, all of them and that's what's so insidious about working you know sort of operating in this. These spaces of how organizations try to include us because you never know what's working and you and they don't even know what's working well, they know I take that back. They know what's working okay, it's just that we always have to work against all of these you know sort of pressures and discriminatory, you know basis.

NORMA STANLEY: People who say that those things do not exist, I simply do not understand it, you know it exists.

Dr. Donna R Walton: Of course, it exists, well, first of all its various is offending, offensive to because when you when you say I don't see color where the same thing. But you know we can’t leave out the big R word, you know we can't leave out the big R word and we, which is racism, of course, and we can't leave out the big A word which is ableism. And so, we have to think about ableism, takes on many forms and that operates as well, in terms of sort of making these spaces not accessible to individuals with disabilities. So you, like I said you don't know which of these elements are working against you, you just know that you're not included right. You know you're not included.

Nadine Vogel: You know, so what advice you know what guidance, do you have for I’ll say you know young girls or young women who are from the black and brown community who have a disability, who are that who have that triple jeopardy, as you say. What guidance do you want to give her?

Dr. Donna R Walton: You know that's a great way, first of all I, I guess, when you speak about guidance, you know I always say know thyself that I think that is the core of advocacy and sort of working through barriers.

NORMA STANLEY: Know and love yourself.

Dr. Donna R Walton: That's right know and love yourself, you, you have to have a certain, I would say sense of confidence. You're going to have to have it it's just no way to get around it, and that means you're going to have to self-disclose you're gonna have to self-disclose I mean I really believe that when you empowerment or power comes from knowing who you are showing up unapologetically as you are. And so, the more you do that, that gives you confidence, the more time someone you walk through a door and that door is closed, okay. Take the next door that door is closed okay take the next door the next door is closed, you know what you do you do the reinvention you knock a hole in the wall, and you make a new door. I make a new door. Okay. That's what you do and so I’m going to say to that young girl, you have to be resourceful you have to be relentless you have to be almost.

Nadine Vogel: Another R word.

Dr. Donna R Walton: You have to be almost radical. You have to be radical, relentless you know you and you cannot and it might sound cliche but you cannot give up you really cannot because you're going to get a lot of you're gonna get a lot of no's oh yeah you're gonna get some no’s, but I tell you, the more you know what you are and what your worth is and that's another one, knowing that you are enough. That's another one, knowing that you aren't enough it's very sustaining. I mean I can't tell you how many times I’ve had incidents where I come home and I’m like wow, but you know. You gotta say hey you got to look in that mirror and say you know you have more than enough. You got you got this you got this, and I say also guidance. Network with those who know more than you and don't be afraid to share your vulnerabilities with them that's really important. Just be vulnerable right, I mean ask for help if you need help, ask for help, I mean that there's sometimes there's this, some mystique around people with disabilities, that we don't need help and some of us, you know don't want no I’m like oh no that's not me. I do, I will ask you.

NORMA STANLEY: That’s with anybody actually tell you the truth. Some people are just not comfortable asking for help. You know entrepreneurs us know people who are just kind of getting started or people who just need their help to guide them to success.

Dr. Donna R Walton: Yeah

NORMA STANLEY: We don’t like I know I’ve had trouble with asking for help and so that is something that we do have to learn how to do unapologetically you know.

Dr. Donna R Walton: You have to be vulnerable.

Nadine Vogel: Right, it makes you vulnerable, you feel like it shows weakness, when you want to be out there, showing strength right we've all been there, but you know the other thing I want to make sure that our audience knows is that Donna, you are a certified cognitive behavioral therapist.

Dr. Donna R Walton: Yes.

Nadine Vogel: The words, the guidance that you're providing is not just life experience but truly trained professional experience.

Dr. Donna R Walton: Absolutely. You know, dealing with the mind you know, dealing with the way you think it's all about your thinking and I really should emphasize that. You know my philosophy moves from or speaks from. How we think is our behavior that's what you think if you think it, you be it. Right and so self-talk, I mean I really work with my clients a lot about this negative self-talk, you have to avoid negative self-talk at all times, because sometimes we can be our worst saboteurs.

Nadine Vogel: Right.

Dr. Donna R Walton: I mean trust me, I mean in my book, I talk about this, you know. I talk about how you at all costs have to you know don't sweat the small stuff. It’s all small stuff but at the same time, you really do have to work on navigating your throat your thoughts, you know monitoring your thoughts.

NORMA STANLEY: There's a scripture that says when a man thinkith so is he when a man speakith so it shall be so what you think and what you say is critical.

Dr. Donna R Walton: It is really critical, and I think we play a down a lot, because you know, because it seems as though it's it doesn't work, maybe. You know, but. But it does it really truly is about that, and you know also I can’t get, I can't get the big P word which is prayer. Prayer and the big F word which faith right um and so you know, these things are necessary in order to changing behavior and becoming and being sustained in your being. There is the things that are going to sustain you.

NORMA STANLEY: It’s helped me, just being a mother of a child with disabilities, it has been my foundation.

Nadine Vogel: Right absolutely so we don't really have a couple minutes left, but what I do want to get to because you did bring it up and I forgot is your book. Shattered dreams broken pieces right.

Dr. Donna R Walton: Yeah, shattered dreams broken pieces it's some it's a memoir and you know I want to say I don't want to say it's a self-help book is. If it helps someone that's fine but it's really more of a memoir and to show whatever happens to you in life, you can retool reshapes it’s about reinvention resilience and having faith in know when something sort of doesn't go your way in life that you that that you don't have to throw in the towel, so to speak, um, but if you do choose to throw into throw in the towel you don't have to stay there, you know there's always ways in which you can change. There are always ways to change. There’s no no endgame in this thing. No endgame.

Nadine Vogel: When I get down on something, Donna, when I get down I always I give myself 24 hours. I’m like okay it's just going to be that kind of day I’m just going to wallow in my misery. When I wake up tomorrow morning it better be a new day a new dawn

Dr. Donna R Walton: That's right.

Nadine Vogel: Because back to what you said. I have to activate that in my mind right, I have to have that conversation with myself, I call it my come to Jesus meeting.

Dr. Donna R Walton: Yes.

Nadine Vogel: Be with myself and really take charge of those thoughts and actions to make that happen and it sounds like that's really what you're talking about.

Dr. Donna R Walton: It is. And you, and you have to practice it, it has become a muscle. You know you have to really become good at that, and then, because that you know people like well how did you do it I’m like it's not overnight, this is not overnight stuff I’m talking about this is work, this is, I mean I’m not gonna say my age here on this live broadcast. But trust me it's been decades, decades of work. And you know what it is still work it's not over yet. I’m still working you're always evolving and that's the piece book emphasizes about resilience and reinvention that you can do it as many times as you like, as long as you're here, you can you just got time to do it. Yeah, and there's um there's a piece that I talked about in my book, it talks about how not putting ourselves in a box. How society puts us in a box, so it says something like I think I remember it like this, it says don't put me in a box, don't try to constrain me don't put me in a box of your own making because I am more so much more more than you can imagine, more than you can force to fit a tiny space limited by your lack of vision. So you have to remember that you have to you are the persons who are perceiving you are their vision is very small. Because immediately if you show up in a room with a disability, sometimes with a visible disability, I should say, because I mean the whole invisible, not invisible but non apparent disabilities. that's another topic, but I just so I can only speak from my experience of a visible. And I know when I walk into the room, I change it it's changed automatically right because first of all there's not many black women walking into the room with this cane who are beautiful okay, who can just command that space. You know because we're not saying we're not we're not comfortable with seeing disability and pretty and all of these things don't go together, no, no, no, no, no, so it flips everybody's brain cells. They just scramble they just, they just can't they can't manage all that um but that's what we have to do as persons who are living in this in our bodies that might be different, we got to change that.

Nadine Vogel: Absolutely wow what a great way to end this episode, although I’m really sad that we're ending me at this is so much more Donna, for you to share with us.

NORMA STANLEY: It was awesome.

Nadine Vogel: I know, and you know you are all that and I am so glad that we had the opportunity and honor to interview you today.

Dr. Donna R Walton: Yes, thank you.

Nadine Vogel: Let me, let me ask one last question if someone's listening and wants to get in touch with you find out about you know anything that you're doing.

Dr. Donna R Walton: Very simple you could go to Donna walton.com and you can also go to divas with disabilities.org.

Nadine Vogel: I just love that diva thing. Well, for our listeners, I hope you enjoyed this as much as Norma and I did. Signing out for another episode of Norma what's our title.

NORMA STANLEY: Disabled lives matter.

Nadine Vogel: Because they do. See y'all next week. Bye-bye.

Dr. Donna R Walton: Thank you very much thank.

NORMA STANLEY: Be blessed everybody.

Dr. Donna R Walton: All right, bye-bye.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

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Disabled Lives Matter

Season 1, Episode 13

Co-Hosts: Nadine Vogel & Norma Stanely

Guest: Bonnie St. John

Intro: [Music playing in background] Disabled Lives Matter… here we go!

Voiceover: Hello and welcome to this week’s episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanely... yay!

Nadine Vogel: Hello, hello everyone, this is Nadine Vogel your co-host of disabled lives matter, and of course I am with my co-host Norma.

Norma Stanely: Great. Hi everybody, it's been great to be here and I’m so excited about today's show.

Nadine Vogel: Me to, because we have, and let me, let me just say this, we have what others have said, one of the most five, no, one of the five most inspiring women in America and this woman I’ve known a really long time, and let me just tell you ditto ditto ditto so with that Bonnie St. John. Hey Bonnie, how are you.

Bonnie St. John: I’m great thank you what a great topic.

Nadine Vogel: I said an important topic, and one that we can't do without you so let's just get right into it um you had a I think it was your right leg amputated at age five.

Bonnie St. John: That's right, it was a birth defect, so the growth was stunted before that I had braces, so I never had a normal leg, I was in and out of hospitals from the time I was born, you know, up until I was 18 I had surgeries and spent months at a time in the hospital so yeah.

Nadine Vogel: So, let's just start right with a bang right. That happens yet you've become you became the first African American ever to win medals in winter Olympic competition, you took home, I believe, a silver and two bronze medals in the 84 winter Paralympics. How the heck, oh see look hey isn’t that cool.

Bonnie St. John: So, for those of you who are listening I’m waving my medals at them.

Nadine Vogel: Waving her metals and if I could reach and grab them I would but since I can’t, so Bonnie how did that happen, how do you go from being a five-year-old who has your leg amputated to this medal winning athletes.

Bonnie St. John: So, I’m black and there weren't a lot of black skiers and I had one leg, but I went into sports, which is a lot more normal now than it was back when I was doing it, which was a few decades ago. It was not a normal thing, but one of the hardest parts about that whole story is my family had no money you know it's hard to ski on one leg is really hard to see with no money. I had to raise money, I had to my end we were in San Diego my mother stayed in San Diego the whole time I had to find a way to get to Vermont and to find a way to get to Colorado. I spent a couple of summers on a glacier in Oregon. I had to find my own apartments my own airline tickets the money you know it's like if you are going into sports as a boy and football and you're good you're going to get recruited you're going to get taken places you're going to nobody's recruiting one legged black skiers in San Diego. I had to find my own resources and get my own self there.

Norma Stanely: wow.

Bonnie St. John: It’s a crazy story, isn’t it Norma. It’s a lunatic story.

Norma Stanely: What a blessing that you were able to find a gift, how did you know that you would be a skier did you always have a goal to ski is that something just came about because you just decided to try it.

Bonnie St. John: So, a friend of mine in high school Barbara Warmat invited me to go skiing with her family over Christmas vacation she gave me a coupon stick notebook paper and threw up a coupon for one week of skiing. And now, so she invited me, but I needed special equipment, so I had seen Teddy Kennedy Jr on TV skiing and he had those little outriggers right, so I knew I needed those, and I didn't have any winter clothes I’m from San Diego I didn't even have mittens you know nothing. And so, I got a pair of Ski pants from the Salvation Army. Because I again, I had no money and I, and they didn't have a jacket that fit me, but I found one at Kmart in the same color as the pants which was a scary color. And I hunted around for the equipment, but I finally ended up borrowing it from the President of a club of amputees that skied so I had to be resourceful I had to be very entrepreneurial. To be able to even go skiing and then, when I went with barb poor barb you know she could have skied anywhere on the mountain right, but I was on the bunny hill falling and falling and falling and falling I wasn't even moving anywhere.

Norma Stanely: Wow. That’s tenacity.

Bonnie St. John: It took me three days, so you have to understand anybody who's listening if you've been skiing you know you snowplow right, they tell the kids pizza pie right it's a snowplow when you need to slow down well if you're on one ski you can't pizza pie, there ain’t no pizza pie for one leg. So, I, so I had to learn how to turn you know do a hockey stuff to be able to slow down it took me three days to learn how to do that because I couldn't pizza pie. So for the first three days I couldn't stop I was on the bunny he'll just crashing into men, women and children.

Nadine Vogel: You didn't discriminate who you ran into.

Bonnie St. John: No. There was this one woman, I remember I slammed into her and knocked her down and she's looking up at me and she says, I only have one leg, and she says I’m sorry.

Norma Stanely: She got in your way.

Bonnie St. John: She felt bad.

Nadine Vogel: That's right well bonnie you know it's interesting because we were talking in a in a previous show about role models. And that you know the children today who have disabilities, whether they are born with them, they acquire them, they need role models. And, and you are that role model right because you show that nothing is impossible and to that end, you know for those listening so not only is Bonnie you know, but an award also winning medal winning skier. She served as the White House director of National Economic Council during the Clinton administration; you had a Rhodes scholarship I think to Oxford while you were going to school at Harvard, so you know you, you're such an underachiever I just.

Bonnie St. John: it's funny it's funny you say that because I went back to the hospital, where I had my leg amputated to talk to some of the kids that were in the hospital, I told them all these stories like what you're saying Olympic medals Harvard and stuff. And at the end of my speech, there was a mother there who was with her son and he was badly burned over 90% of his body. And she said to me that her question to me was yes all that's really great, but will my son lead a normal life. And I kind of froze up in that moment, because I, you know I just like I didn't know what to say. Will my son live a normal life, I finally blurted out no, aim higher, aim higher. And so, you know I didn't get a normal life, but I did extraordinary things and I think as a disabled child, you often just wish and hope for a normal life, I tried so hard to be like the other kids and I really confused in my head the difference between normal and perfect.

Norma Stanely: Yes.

Bonnie St. John: I thought that normal kids are perfect so, for example, like kicking a soccer ball. I was kicking a soccer ball in the backyard with my brother and I, and I finally got so frustrated I said Wayne I can't, I can't make the ball go where I want you to have a rubber foot, because I stand on my real foot and I could kick with my fake foot and I said I can't my fake foot can't control the ball I don't I can't control where it's going to go this is this is hopeless, and he looked at me and he said everybody has trouble controlling where the ball goes. And so, I often confused normal with perfect. I thought, people with two feet can make the ball go wherever they want it to. Well, no it's not like that, so there were so many things like that in my head that I thought normal people were perfect and normal is not perfect normal is way overrated you know so for disabled people aspiring to be normal is crazy don't aspire to be normal, be great.

Norma Stanely: Amen.

Nadine Vogel: Well, it's all about perspective.

Norma Stanely: That's right.

Nadine Vogel: It’s about perspective and how your perspective is or changes, and you know Norma, like me, you know we have adult children with disabilities, and you know our perspectives are different because of our roles in our kids’ lives different than you know our daughters’ lives. And I think that it's something that you know it's about making shift in perception and making shifts into your point, what's acceptable what's normal what's better than what's typical you know words matter.

Norma Stanely: Yes.

Nadine Vogel: Words create images, and we act on those images. So, bonnie you know, one of the things that you do fast forward a little bit today is you're a leadership expert. And you train leaders in corporations and other organizations, so when you're doing that, how do you convey to them how these words matter, especially as leaders.

Bonnie St. John: And are you thinking about words about people with disabilities or.

Nadine Vogel: It could be anything could be anything.

Bonnie St. John: it's funny to Norma and I are both black to and the word for black has changed so much over time right, we were negro we were colored we were Afro American, which is a hairstyle.

Norma Stanely: Absolutely.

Bonnie St. John: Then it went to African American which was kind of interesting because then it's like you say Polish American or Chinese American it was like oh yeah let's say where you're where you're from on the planet, that makes sense, but then that stopped working because corporations that have international people kept saying African American.

Norma Stanely: Right, I’m from the Caribbean.

Bonnie St. John: So yeah, so we went kind of back to basic black.

Norma Stanely: That was the same thing with the disability community because Special Needs was something that everybody said then differently abled.

Bonnie St. John: Back to disability. I went to the UAE and when I landed, they have a term oh now I’m not gonna be able to remember when in the airport there's a special line, and it has the picture of the symbol, with the wheelchair, but it says it says something different. Do you remember what it says Nadine, It says like people with special abilities or something.

Nadine Vogel: Yeah, it did, they have one in India as well same the same thing.

Bonnie St. John: And I loved it and I took a picture of it and I sent it to my friends who are who are in the disability community and they hated it.

Nadine Vogel: Right.

Bonnie St. John: And they said, you know that's like a euphemism that's like you know and I’m plus, I think, because we've worked so hard to imbue the word disability with power and interest in diversity it's sort of like don't take that away from us we've worked really hard to empower that word.

Nadine Vogel: Absolutely, so you know if you're talking to business leaders and they are interested in maybe hiring individuals with disabilities or they have individuals with disabilities in the workplace, which we know they do, even if they think they don't. And they're wondering how best to communicate at a level that's appropriate and nondiscriminatory and then, when I say nondiscriminatory I don't mean from a compliance standpoint but from an inclusive standpoint, what is it Bonnie that you would share with them.

Bonnie St. John: I guess, I guess, one of the things that is good is, if you have ERGs to start an ERG or affinity groups, whatever you call them business resource groups to start one for people with disabilities. And you know, the etiquette is to say, people with disabilities, not disabled people but because we're you wouldn't say a cancer, you know you say a person with cancer right so it's a person with a disability. So, if you can start a group an affinity group for that you can get them to start discussing what words do you want to use what feels comfortable in our culture and so they let them be self-determining. Now, what I’ve heard from a lot of companies, is they like these groups to sort of spontaneously start somebody comes in and says, I want to start the group, and then they say we don't make group start, we just support what's there and often the disability group never starts. And it could be because people are covering it up people don't feel comfortable so you're sort of asking for the chicken or the egg well until a group forms and people get more comfortable nobody wants to raise their hand and say they have a disability and everybody's hiding it so waiting, whereas like that policy might work great for the women's group let's get the women to start it. But it's not necessarily going to work well for the people with disabilities group, you may need to go out and make sure it starts and that could be a comment on your culture to if people don't even feel comfortable enough in your culture to start the group to say, well, you better start the group that's not really a good way to address it.

Nadine Vogel: Absolutely, and I think that you know that that goes back to, and we have these conversations about corporate culture and people's comfort right with just difference in general and leaders have to be comfortable with difference, including Oh, by the way, leaders with disabilities, which we could have right it doesn't matter. Right, the person with the disability is not always the entry level person. We have to go to commercial break, but what I want to do when we come back Bonnie, I want to talk a little bit about and go back to the Olympics little bit and talk about the museum the Olympic Paralympic museum, because I think that's pretty cool and I’m not sure if enough people know about this yet.

Norma Stanely: I certainly didn't, I would love to hear more about it.

Nadine Vogel: Okay, so, ladies and gentlemen, we'll be back in just a minute with St. John

COMMERCIAL BREAK

Nadine Vogel: Well, hello everyone and welcome back to disabled lives matter, not just a podcast but a movement. Norma and I are here today with Bonnie St john and having an amazing conversation about so many different topics. Bonnie let's talk a little bit about this, what I think most people don't know this new Olympic Paralympic museum.

Bonnie St. John: So, it's in Colorado Springs and it is really exciting what what's kind of exciting to me, is it is the first time we've had an Olympic Museum in the US, so it is, it is showing all of the history of the Olympics in the US and our Olympic teams and athletes and everything. But it was created as an Olympic and Paralympic museum. And the US Olympic Committee actually rebranded themselves as the US Olympic and Paralympic Committee and the museum is yeah and it's so funny, I’m so for years it's been the usoc it's hard for me to say the USO PC. But I love that the museum never got built until that real alignment had happened, and so they're not retrofitting Paralympians into the museum It is everything is just done that way and there's some really great multimedia stuff too like there's a segment where you can run a race against an Olympian so it's like you're in a you get in a starting block and you run, and they have a video of the Olympian or Para Olympian an literally run against you.

Norma Stanely: That’s awesome.

Bonnie St. John: I mean there's so much cool stuff there, so my joy, the fun part for me is I yeah, I got to be one of the voices in the museum when you walk around and like you push a button and it tells you about the exhibit some of the exhibits, you're going to hear my voice so it's me.

Norma Stanely: Very cool.

Bonnie St. John: The other person who does it so it's half me and half this other person who is john neighbor he's male and female he's white I’m black he's like six foot seven and I’m five to. Because he's a swimmer are tall because they can reach the other end of the pool faster right and he's a summer athlete and I’m a winter athlete so we're like as different as you can be and so the diversity in that museum is just incredible. And you get to hear the different voices yeah, I would totally encourage you to go.

Norma Stanely: Definitely want to check that out.

Nadine Vogel: Yeah, what I love about it as you're describing it is while the diversity is amazing what I’m taking away from it is the inclusion.

Bonnie St. John: Inclusion Oh, and that means, that's built into everything so as you're going through the museum to, the way you, you can I guess you can listen, or you can do Braille on the exhibit everything's very inclusive in the way it's designed it’s in what do you call that inclusive design.

Norma Stanely: Universal Design.

Bonnie St. John: Universal Design, thank you it's so again because they only opened it unfortunately, they opened it during the middle of the pandemic I have not actually been there myself yet, but um but it's because it's done now it's very now so it's very inclusive it's universal design it's so great.

Nadine Vogel: And Bonnie you are telling us about a documentary on Netflix I think it’s called rising.

Bonnie St. John: Rising phoenix yeah so go on Netflix and watch rising phoenix and it's a documentary about the Paralympics and they feature several athletes and I remember one of them is a Slavic I don't know if she's Russian who immigrated here and she's dispensing but she's both of her arms are somewhat amputated and she sits in a wheelchair and does fencing But she is stunningly beautiful and she's scarred on her face too, but beautiful the way and you realize that beauty is about the way you carry yourself. Because she carries herself like I am the most badass beautiful woman you have ever seen. And then there's a black man who was in a war zone that he grew up in and has a disability and he runs track and the photography in this thing is so incredible they show him doing a long jump in the sand coming up in slow motion and it's just it's luscious photography it's a great story, and then they do some background things where they go into the start of the Paralympics and how that got going and what some of the history is and it's just a great I watched it with my whole family, and you know, even though I’ve been in Paralympics we all learned a lot to. I highly recommend rising senior trip camp, we were talking about kripke camp to, great piece of information about the history of some of the people who became leaders in the disability rights movement. And sort of how they got empowered as children going to these camps, and I think that opportunity to have exposure when you're a teenager to other people with disabilities is really important. I started skiing at about 15 and that was the first time I was around a lot of people with disabilities and as you're forming your identity and your sense of self-worth and all that that was really important to me and those memories came back watching that that you know is that for them, they were going to camp and doing sports, for me, I was going skiing and doing sports and meeting people with all kinds of disabilities arms legs wheelchairs it was very empowering.

Nadine Vogel: We definitely have to go back and watch.

Bonnie St. John: We're giving people homework here.

Nadine Vogel: I know, I know, but it's important homework. So, you know, in the time we have left bonnie I want to also touch on and go back to what I said before that. You know you travel the globe you're a keynote speaker business owner you're an author of seven books on you train as a leadership expert with blue you have your company's blue circle leadership. You know what's interesting for me is some of the folks is that we talked to they think you know I have disabilities and therefore I work in the field of disability. You have disabilities but you don't really work in the field of disability, which I think illustrates a really important point. That just because you have a disability, does not mean that's where you have to do your work and whether it's nonprofit for profit, you are an amazing contributor to today's corporate leaders talk to us a little bit about that, please.

Bonnie St. John: Thank you and I agree with you and I celebrate the people with disabilities who work in the field of disability, we need you there too. But you're right we don't have to be limited to that we have lots of ways to contribute, and so our company blue circle leadership does leadership development. And our sweet spot that we were we really went deep into was multicultural women in corporate America. So about five years ago, we started delivering a ot of virtual leadership training programs for people for multicultural women. And we expanded on that that is really grown and now we have programs that have multicultural men in them, we have programs, we have one now that has its for ERG leaders, so we have LGBT we have people with disabilities, we have men, women veterans everything, so it but being able to deliver virtual leadership development, especially during the pandemic became a really important option for people and we were really good at it, because we had been doing it for years. It allows you to provide customized training. Oh, another thing we do is leadership development for women in tech, you know, so we do we do very specialized things to address special needs, special needs and people and leadership and so getting to do that is really gratifying and we've had to push the barriers on a lot of technology I’ve had to hire a lot of programmers. We hire people who facilitators in addition to me so accessing a lot of experts in different areas to package together, something that really helps companies to grow and leverage their people.

Nadine Vogel: That’s so important that Norma and I have even had conversations about you know, helping leaders lead. And that’s what you do.

Bonnie St. John: Actually, what's interesting too is during this whole year of the pandemic and black lives matter. You know, first of all, the virtual became very important because we were all in lockdown and then during the black lives matter social justice movement, the fact that we were really equipping minorities to be successful became an important part of the conversation. And we had alumni Association for everybody who's been through our programs and the alumni association during 2020 started doing these safe space conversations because we were finding our grads were really getting stressed during the social justice movement because their companies were shoving them out front like oh here you explained it or hear you. And they were in pain, you know, and we had a lot going on during that so we were giving them support so that they could help their companies to meet the challenge and so yeah, it's been really rewarding work that we get to do.

Nadine Vogel: Well and I think that you know, your most recent book right micro resilience, you know you talk about how you can make small changes small shifts that will have a major impact on your focus on your energy and that's something I think we all needed before the pandemic, but certainly while we're in it and beyond, more than ever, so these fabulous books.

Bonnie St. John: Thank you yeah, I’ve been doing a lot of speeches on micro resilience during the pandemic and it’s very evidence-based hacks so really small hacks that you can do that help your brain to be less exhausted, I know about you, but I’ve had so much brain fog in this whole quarantine pandemic thing and helping yourself to be have more energy and to be able to make better decisions. And to be rooted in purpose, one of the ways to stay resilient is to stay rooted in purpose and you know it's an easy thing to say, is yeah, I have a strong sense of purpose but how do you let purpose give you energy at three in the afternoon on a Tuesday when you're tired. So, giving people hacks operation a lot of hacks that you can take action on that help you to really draw on your resilience and increase your resilience.

Norma Stanely: Awesome I look forward to reading that book.

Nadine Vogel: Well, Norma, I don't think you should let it get away with just that I think you have to share one of those hacks with us and our listeners.

Bonnie St. John: Gosh there's a lot of fun hacks what one of them, and this one is so easy, you can do it with your team at work, but you can do with your family you do with your kids is to have a first aid kit for your attitude. You can make your own first aid kit, and this is something you know you can do as a team building event. And to think about you know what is it that would help you turn your attitude around and people put chocolate in our you can put in you know, inspiring pictures or quotes or something like that. I have a note that my mother gave me that says cherish yourself and she had that old fashioned penmanship. My mother passed away a number of years ago, but it says cherish yourself and my mother, she had to go to segregated schools, so she lived she grew up in Florida, and she had to walk past the beautiful school for white kids and go another mile to the rundown school with no textbooks for black kids. So, I know I get chills when I say this, she went on to get her PhD and to become an educator and to turn around some of the ghetto schools that that were you know not working for kids. And so, it was like and she said she was interviewed in many newspapers and she said it's like getting to go back to that rundown school, I was forced to go to and make it better. And so, when I see that note that says cherish yourself, you know it's like whatever you're dealing with today, you can kind of put that in perspective and say so, what can you put in your first aid kit that would help you to get perspective on you know okay, so my computer is having problems today, I can do it, I can deal with that right.

Nadine Vogel: So, you know I went to college in the south, so when you said that I was thinking well, maybe like a nice jug of some southern moonshine.

Bonnie St. John: Put it in perspective, you know, this is my first aid kit, Emergency moonshine.

Nadine Vogel: I gotta take a picture and send it to you.

Bonnie St. John: What would you put in your first aid kit, Norma.

Norma Stanely: You know um I don't know probably like you say some quotes I love quotes food I’m a foodie something that I love to eat I don't know I really don't know.

Bonnie St. John: My faith is important to me to and fun fact Nadine we were talking about Barbara Warmath who invited me to go skiing for the first time. One of the side benefits gifts of the pandemic is I’ve been going to church with Barbara so she lives in Chattanooga Tennessee but she's going to virtual church in North Carolina. So she invited me to go to the same so we're going to virtual church services together this wonderful church that has really interesting people and I get to see Barbara Warmath on a Sunday.

Nadine Vogel: Very cool and I, you know and going back to you know the note from your mom I mean it sounds like you know what she's saying is it doesn't matter what happens to you in life it's what you do with it. What you make of it.

Norma Stanely: Always.

Nadine Vogel: How you believe in yourself that really matters and.

Bonnie St. John: And she really struggled with it too it's not like she was just like Pollyanna like okay we're positive you know. If we're going to get real here, she was actually suicidal at various points, you know she had a lot of depression, but she fought it and struggled to stay positive and so I’m sorry I interrupted you.

Norma Stanely: Look what she did with you and help you then become what you became.

Nadine Vogel: Absolutely, you know and it's you know it's funny I as you were saying about you love quotes and so forth, one of the things that I never thought of it is my first aid kit but It has been in my wallet since my older daughter, since the second day of her birth and it's a poem called welcome to Holland written by Emily Pearl Kinsley she was a writer on sesame street when her son was born severely disabled. And my daughter with Gretchen was in the NICU for three months, and they assigned you know, a, I guess, a call it like a peer mentor someone who went through this and she handed me that poem and it had stayed in my wallet. And I share it I copy it is okay Emily gave you permission to put it in like gazillions of places thankfully. And but at the end of the day, what it is, is that you know you plan to the trip to Italy. Your child's born with disabilities, you find yourself in Holland you can't ever go to Italy, and your grief with that you can't but what you learn as a Holland is a beautiful place. Windmills and tulips and you really come to appreciate it and I probably put that poem at least once a day, here we are almost 30 years after she was born.

Norma Stanely: I’ll have you share that at my Mother’s Day event.

Nadine Vogel: So, Bonnie, oh my gosh you know I could talk to you for ever and ever and ever, and so we will have to have you back so we can talk more, but I think that you so clearly illustrate the purpose that we have here with this podcast which is disabled lives matter.

Bonnie St. John: Thank you, thank you for doing this.

Nadine Vogel: For helping us make us this a movement and for all our listeners take to heart everything Bonnie said, because you too can make a difference whether for yourself a family member or friend a Coworker, because disabled lives do matter.

Norma Stanely: Absolutely.

Nadine Vogel: So, Norma, take us out.

Norma Stanely: it's been another great show thank you guys and we look forward to talking with you again very soon.

Bonnie St. John: This was great you guys, bye.

Norma Stanely: Thank you talk to you soon.

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Disabled Lives Matter

Season 1, Episode 12

Co-Hosts: Nadine Vogel & Norma Stanley

Guest: Chris Downey

Intro: [Music playing in background] Disabled Lives Matter… here we go!

Voiceover: Hello and welcome to this week’s episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley... yay!

Nadine Vogel: Hello everybody, welcome to another amazing episode of disabled lives matter, this podcast is not just a podcast but rather a movement to show that people with disabilities do matter and joining me is my co-host, Norma Stanley.

NORMA STANLEY: Hi everybody.

Nadine Vogel: Hey Norma how's it going.

NORMA STANLEY: It’s been a beautiful day I hope as well, where you are.

Nadine Vogel: Absolutely, absolutely and we are joined today by Chris Downey, Chris is the President of architecture for the Blind, Welcome Chris.

Chris Downey: Hi there. Hey, Nadine. Hey, Norma

NORMA STANLEY: Hi, how are you.

Chris Downey: Doing great

Nadine Vogel: I am so glad to have you join us, so you have been an architect, I think, for over 30 years. You probably started when you were like I don't know five.

Chris Downey: But yes, I got my first degree in architecture in the beginning of well graduated in 1984 and I’ve been working ever since it's taken a break, to go back to Grad school but it's been a non-stop Hall, and in working architecture and studying architecture since 1980.

Nadine Vogel: Now, if I recall correctly, you lost your sight in 2008.

Chris Downey: Got it yeah 2008.

Nadine Vogel: So please tell us you know a little bit about that, and your background and how you transitioned as an architect, even without site, because I think most folks if they're not familiar with blindness or visual impairments are probably wondering how the heck are you doing that.

Chris Downey: Yeah, I was kind of wondering that at first to it was a situation that was not expected, it was the unintended consequences of surgery. And I had not given it any thought and even as the as my sight, it failed started failing two days after the surgery and then next time I woke up, it was all gone I still didn't think that you know the blindness would stick that would be my new normal and it wasn't until a week and a half later that the doctors said there's nothing more they can do and it wasn't until then, that I was like oh, I guess that's it. And, and so, for the first time that day I started really dealing with it. And, and to make matters worse, within six hours, I was visited the hospital room by a social worker who came by to do deal with all the logistical things of registering of the state and social security all these things you do, and our opening sort of introduction said, and I see by your chart that you're an architect, so we can talk about career alternatives.

Nadine Vogel: Oh, my gosh.

Chris Downey: Yeah, so it was like it hadn't even been a day, not even half a day and I already was being presented with you.

NORMA STANLEY: You can’t do that anymore.

Chris Downey: Yeah, so that got my attention. That was disturbing and started like on any level, why on earth would anybody say that so quickly. Especially someone sent there to help out.

Nadine Vogel: Right exactly a little more training perhaps.

Chris Downey: Yeah, yeah but you know, but it was an interesting situation where, where I had recently sold the shares of my partnership to my partner and went to work as a managing director of a sort of startup and sort of architectural space doing prefabricated modular homes that were green sustainable really exciting work and I was to run their architectural office for that work and I’d only been there for less than three months, so the job description was very much still in mind, I could just go down the list that night of all of the job, my duties job description, and I could just check off the box, I could do this kind of this like it oh yeah I don't know about that one. Or probably, but it might take some time to get there, and so I got through that list it was like I can do 60-70% of what not description and then there was a handful of things that I thought I could do, but was going to need some training and some others I was like I have no idea how that's going to happen, but that gave me the confidence to, and partially with the by then I already had 20 years of experience.

Nadine Vogel: Right.

Chris Downey: So, I had a lot to build on, and so it was easier to see how I could stay engaged, to me the bigger question was how to be fully engaged and in a meaningful way that sort of kept me and sort of the creative side you know there's a lot of texts there's a lot of information, data management, all sorts of things that are tech space, but it was a creative thing of how to do that, that was, you know what about that, that was a big part of my passion for being an architect, so that was the critical question.

NORMA STANLEY: Wow.

Nadine Vogel: So, there’s two parts to this right, so one is how you're suddenly thrown into this world and trying to figure out how to make this work, but how about this new employer of yours. What was their reaction and response.

Chris Downey: Well, you know it was, many would say you know losing your sight as an architect would be like the worst thing ever and I have friends that are architects, would say that to me when they would come to visit. But then when I really get down you think about it, you know they're architects by their personality by their traits characteristics by their profession that's a creative profession in the creative professions you value different perspectives different ways of looking at things in fact you're really kind of trained to tackle those to seek out those alternative ways of looking at things so in many ways it felt like, and I think they sensed and I think that the founder of the company, she was like one of the first one out of the box saying you're going to get this you know I’ve got all the confidence in the world that you can take this on and not just cope, but really do well and find sort of meaningful things within the profession and so she was she was supportive the office was very supportive and I wanted to you know they were very it's an energetic very optimistic opportunistic place, and so I was lucky in that regard to have that.

Nadine Vogel: I'm glad she wasn't you know, like the social worker.

Chris Downey: Yeah, that would’ve been very different.

Nadine Vogel: Very different exactly, and you know it's funny when you say about you know the creative part of this because I’m in the process of building a house right now and it's under the second or third house that I’ve built in my adult life and you’re right I rely on the architect, not just took to drop those blueprints but I rely on the architect for perspective yeah on all kinds of things and that really does reflect and revolve that creative process, so I think that that's interesting and think out of the box, I think that that's probably the biggest thing I rely on him for. So today, I believe that your specialty is universal design.

Chris Downey: Yes, universal design and I sort of expand that beyond to sort of user experience design. For the blind and visually impaired well maybe there there's being out in California, in the San Francisco Bay area I’m sort of surrounded by technology. And there in technology there's a lot of interest in user experience design and which I found kind of curious because an architecture it's all about in theory it's all about the people occupying the space occupying the building, the city, whatever it is. And it's all about that human inhabitation of the space and architecture had been teaching that a lot was big part of the profession in the in the 70s 60s and 70s and we had sort of drifted away from that and, to the point where it just really wasn't a major conversation in in the schools and in the profession and so much of it was built on the image, you know picture in the magazine the view from the street, whatever it was that image and, and so it really moved away from, whereas in technology they were really embracing that sort of human experience the user experience within the technology, the devices and not that they're perfect but there there's like major. All the major technology companies have you know entire departments in really, really powerful investment in people and people with disabilities. In that space really exploring it and trying to improve upon the experience of the broad spectrum of people that would engage in that technology and that device whatever and so yeah, I it's sort of a nod to them it's like the lesson, okay, they took it that baton architects, we need to take it on and take it back or take it with them and really sort of pursue those same things and part of it is theirs in universal design or thinking of it is inclusive design yeah that is really the critical thing it's about really trying. And I, these days I tend to prefer talking about is inclusive design about really including everyone within the space because it's not sometimes it's not that one thing one solution works for everybody. If you think about the high low drinking fountain well that's the perfect example you know, there are those that need to roll up to the lower drinking fountain or are shorter stature and that's the right size if that's all that was there myself if I’m you know I’m six foot four inches tall, if I have a bad back a moment or it's in a got a weird tweak that day I’m not going to be able to bend down that low to get to the drinking fountain so that's why they have the high low drinking fountains so. In user experience design yeah, I’m really trying to focus in on sort of the different user experiences, but through that lens of an inclusive design trying to find ways to really include the greatest broadest spectrum of people in the users within their environment.

Nadine Vogel: No, I think it makes a lot of sense, Norma, go ahead.

NORMA STANLEY: I know I love this because that's something I’ve always wondered about you know for real estate investors and people in developing you know complexes I know, even with the you know the active senior type of developments they have coming up for the aging population, but are they including the opportunities for people with disabilities to be able to access places like that I don't see enough of that happening and I’m really excited about what you're talking about in terms of universal design because that to me is like a really great market to really build on to use the word.

Chris Downey: And it's funny even within that market there's a lot of if it's handled well, it's in all in terms of compliance with accessibility regulations which. You know oftentimes a developer, or even an architect might think of that is like the gold standard within the disability community yet that's really that's the floor, yeah.

Nadine Vogel: Right, exactly.

Chris Downey: And that's in many cases, if you think about a senior living Center Assisted Living Center any number of places that simply is not enough. Right, that's just that's just keeping you out of the courts.

Nadine Vogel: Right, exactly, and you know it's funny we're so I meant to a building a home, and we have put an elevator in the home and there's no one in my family right now that requires an elevator, but I can have a friend that comes over next week, that would require an elevator. And even the island in my kitchen, we want to make we wanted to make sure that you could pass through on either side, it was enough room. For someone who perhaps uses a wheelchair or someone, perhaps it just is walking with a cane or a Walker and has a caregiver walking side by side with because you know I’m not getting any younger I like to think I am but I’m not and you know this could it could be me, that means that or it could be a friend or a family member whom ever, and so I have a concern about this, you know companies or professionals managing to the bottom. Managing for compliance the check the box and that's why I’m so glad you know, Chris that you're talking about inclusive design and variance because everybody talks about being inclusive I Norma knows, I have a saying that you know diversity is about you know, inviting someone to your party inclusion is asking them to dance.

Chris Downey: Right.

Nadine Vogel: Everybody talks about it, but I’m not sure they always know what that means, especially in your industry.

Chris Downey: Absolutely and you know and full disclosure I didn't have a full appreciation of it before I lost my sight and the disability community and got to really experience it from a different side and I would like to think that most architects most developers most planners would prefer to kind of learn that and get a sense of it, rather than having to experience it personal. You know there's something to learn it and I think that's where having that inclusive it, you know, to me, one of the biggest challenges I like to put out to the architectural profession is to encourage, and there's a lot of push for diversity within the profession and that's been focused on diversity ethnic diversity racial diversity gender diversity and Lord knows, we need more diversity across all those things in the profession, but also within sort of the people with disabilities, because you're the best teacher is that person next to you, and they are far too many architects. In this world that don't have people with disabilities in their office it's not part of their lived experience.

Nadine Vogel: Right absolutely well we are just at that time for commercial break so just stay tuned and for our listeners will be back in just a minute with Chris Downey and hearing more about inclusive design and user experience, Norma, we'll see you in a minute.

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NORMA STANLEY: All right, well you know I wanted to ask you, Chris this whole situation you know, like you said, the floor is just a basic thing that that that Ada, you know, requires people to do, but when you're talking about potential students and people who wanted to go into architecture, what would you recommend them to study, what would you recommend them to do to be become part of the industry that you're in and architectural firms who might want to hire them what would you say, would be a place where they can all come together and make something happen.

Chris Downey: Well, in many ways for tackle that right, right from the heart go for the juggler. For the creative space, that's what makes their world spin and gets them excited and, within that creative space the, way too often the thought is that these regulations, this different way of approaching it is limitation within that creative space. And I’d like to open it up to think about no it's actually about releasing the creative space bringing more people into the discussion different ways of looking at it and also different ways of imagining the space and thinking about things in a different way and and I actually had an opportunity, a few years ago, a couple years ago to participate in a program that was sort of spearheaded and the idea came from the dean of the bartlett school of architecture in London. He was curious about what the profession had been missing, by the fact that they had never had a student that was blind. And it just not been part of the profession and not been part of their academics. And he wasn't thinking about how to open up the profession to the blind per se, but more what are they missing. From the understanding of architecture from the creation of architecture, because it had excluded that perspective from that creative process, so I really think that's a remarkable position. And something, a position that I think more and more schools need to think about in terms of who's not at our table who's not sitting at our desk who's not sitting there in our in our design juries in the studios and what are we missing by not having that voice, what are we going to do about it.

Nadine Vogel: Right, that's probably the more important part right what are we gonna do about it, and what should they be doing.

Chris Downey: Yeah, so there's a lot of effort, like, I said to diversify, but this has to be part of that diversification awareness and strategy of reaching out to people and I'm sort of life. Sometimes I get asked the question of you know I’ve I had 20 years of experience, two degrees in architecture was a licensed architect before I lost my sight now about a young student who's blind that wants to go into architecture, what about them. And you know that's it's a really good question and it asks a lot of the professors it throws them deep into they're uncomfortable which is the creative space, you know when you have to be really creative it's because you're uncomfortable because where you are isn't quite right because they need to really solve something. So, here's a different way of thinking about architecture, here's a different you know require different way of presenting it talked about it, he didn't just throw an image up on us on a screen and then talk about it is if everybody understands it. And so, how do you communicate that, how do you how do you have those conversations but it’s a really. You know, by putting it into the creative space and getting them to think more broadly about the profession and about who they're designing for what's it about it's not if all it is about designing the privilege few or you know pretty privileged norm, or the average what's thought to be the average condition. Then that's a bit of a fallacy and that's something I sort of grown to really appreciate through having lost my sight. Is that you know it's It is like having a disability, having that kind of see change in your life that's basically like that's like a true essential confirmation of the human experience. That affirms our humanity and through that there's so much to gain and to offer, so it really needs to broaden the way architects are thinking about space who's inhabiting who's using who's benefiting from him and not how to accommodate them right to really include them, as you said, you know how to yeah it's not enough to just go to the party or open the door it's how do you get in there and dance and just be like everybody else and another way I like to think about is something that I came across in the, of all things, disability awareness merit badge handbook I was leading for my son's scout troop in there, it said that a person with a with a disability and they could question some of the language. I’ll excuse that, but I think the point is worthwhile, you know, a person with a disability isn't Is you know defines it a person with different conditions, but that that person isn't handicapped until a barrier is put in their way. Absolutely and to with a couple things that come from that. One is it's like the idea, the question then is well who puts those barriers there we offer those barriers it's architects it's planners it's developers it's inspectors that look the other way, you know it's any number of things. But also, most importantly, it puts the responsibility on architects and it's something I actually had psychiatrist once talk to me about architects and he said, you know in our training we get license we, we have to part of the oath we take the requirement we follow is to advocate for our patients and ours. In the people do architects to take over the responsibility of advocate advocating for their users, I never heard that before. Not part of the certification that's not part of being a licensed architect you look out for the health, safety and welfare, but to advocate for the you know the broadest range of users of people that hadn't least the hadn't been presented to me.

NORMA STANLEY: Right, that's so awesome and tell you the truth, that goes across all industries.

Chris Downey: Yeah.

Nadine Vogel: Absolutely, because if not for my architect my builder my doctor my whoever advocating on my behalf my understanding, my unique needs then what's the output or outcome going to look like and I think to, and you know, Chris you're a perfect example of this is that the disability community is one of those private clubs that anyone can join at any time. Right, you never know when you never know how and the longer you live, the more likely in some way, shape or form, people will join it and so it's really advocating for life for people. because you might not need this today, but you could need it tomorrow. So that's, that's really important I am I think a lot of folks and especially architects don't think about that and again, I think it's also the way you're speaking to this Chris. Right, that it's inclusive design I love putting inclusive instead of universal. Understanding the seven principles of universal design, but perhaps coming up with a term like inclusive that are non-disabled counterparts to better relate to.

Chris Downey: yeah, and that's so, it's hard to argue with that it's right universal is somewhat abstract it's not quite as sort of immediately human. As the term of inclusive. So, there's a lot of power in that different language, but you know there's are some things like the principles are universal design. I really value those because as a code as a way of thinking it's not a code it's not codified but it's asking questions and posing some things that you really have as architects and designers you can't just look at the reference and comply with it, you got to think through it it's asking you to think. You know how you know is this is this providing equity and use it as if providing you know perceptible information yeah is that enabling the size and space for you to, and there's so many different ways of looking at it when I first did as someone who has recently blind. I was like I’m not seeing a whole lot in here specifically about the blind, but the more and more I dove into it more and more, I was like this is this is really remarkable there's a lot of depth here and one example is like a tolerance for error.

Nadine Vogel: Yes, yes.

Chris Downey: And that's it from the side of that experience I good experience, I had a somewhat painful experience I had once was when finding it's easy to find the first step to you know for a stair going down my cane finds it no problem, then I want to find the handrail so I went to the right side to find the handrail and boom there's the wall and I run yeah but my knuckles up against the wall and it felt like a cheese grater. It was like sharp all these sharp points on it and I had to drag up that to find where the handrail was it's like okay well without sight you can't be visually precise level of precision that sight affords yeah that's the privilege of sight, if you don't have that if you can't be that precise you might have you know imperfect vision or my some of my friends refer to as imperfect blindness low vision conditions and your site is deceptive or your you don't have as much control of your extremities if you reach out for something you need to allow for that imprecision you can't just assume everybody's going to hit that hand rail and avoid the horrific surface you just put behind it.

Nadine Vogel: Absolutely and understanding to, that there are individuals whose disability is temporary. Whether it's sight or someone you know, is it a cast for six months, I mean, whatever it may be.

Chris Downey: Yeah, or just somebody coming carrying boxes or groceries home and all sudden your arms are all full and you can’t grab the doorknob if you have a lever the handle perfect. That lever handle is there because of Ada REG requirements, but, and you can have no disability whatsoever, except for that moment that you're carrying those groceries and then and then last year and astronaut, you can float it in the antigravity space you kind of need some flexibility.

Nadine Vogel: Absolutely, and you know you know it comes down to barrier of thought, if I believe that people with disabilities don't need certain things, or that this is not important to people with disabilities and I act on it and I’m an architect or designer well then, there you go that right.

Chris Downey: Yeah, or the thing that oh they're not gonna be here.

NORMA STANLEY: Right.

Chris Downey: Whenever I hear that whenever I have a friend john me oh, you know this doesn't sound like a good hike for you like yeah turning on okay, the debate is over, I’m going.

Nadine Vogel: that's right that just makes you mad.

Chris Downey: Trying to decide for me that it's not safe it's not right and they're not allowing me to come to that conclusion I’m going.

NORMA STANLEY: Absolutely, like to say I don't like, for my daughter to miss out on anything and she does not talk or walk. But you know I want her to be a part of everything that she can be a pride of so I totally get just talking about don't assume anything about what a family member, individual, can do.

Chris Downey: I create a space expanding what you think about what people can do.

Nadine Vogel: Well, and Chris, I think you're a perfect example of that beyond being an architect, is it true you're a competitive rower on a crew team.

Chris Downey: Yes.

Nadine Vogel: Let's talk about that one.

Chris Downey: Yeah, it was. Something I never did sighted. And, about a year into having lost my sight had a friend who lives in downtown Oakland new Jack London Square, and he called me up and he said hey there I just found out they're starting a new a new men's crew team down here in the estuary. I talked to the coach he's up for-giving it a try with you, you want to do it, and I was like sure I don't know why not I’d actually had a friend who is blind, who was competing crew before she lost her side and then she picked it up again and so she had encouraged me to give it a try and when she realized I was 6’5, 6’4. And, and I was an avid cyclist she was like oh, you need to try rolling so anyway, I had that kernel that little thing thought in the back of my mind and it's as I got into it it's you know it's the perfect sport if you're blind and, in fact, a lot of teams it's a common practice for them to do drills with their eyes closed when they're all in the boat together. A big part of it is to is to listen to all your pay attention to all your senses, you need to hear the motion in the boat, you need to hear the blades catching the water. You need to hear the movement up and down as they slide on the seats; you need to feel things in the boat, you need to feel the set so that you know it's not tipping to one side or the other right in there it's an incredible multisensory sport, you have, there are times when the wheels come off and you got mayhem in the boat yeah, sight can kind of help out. But I can figure it out and, and the better you get the less likely you get mayhem in the boat. And it really, it's a remarkable thing I get in about I put my hand on the boat I go with it walk into the water get in and at the boat I’m just another guy just another button to see and it's all about whether I’m contributing whether I’m matching up and you know we've got some advantages in the blind experience you really get to really focus in on proprioception your awareness your body in space muscle memory. All these other experiences sound rhythm movement and there's so much to work with, and it is fabulous being out on the water, where you can just reach out, and you know just a couple inches away yeah there's water.

NORMA STANLEY: That’s awesome.

Nadine Vogel: Well, I think, if anyone illustrates what this podcast is about right Norma, that disabled lives matter, it is you. I mean architect you sing in your choir you're a cyclist you're on the road you're on the crew team. I’m not sure if there's anything you don't or can't do. But I know that our listeners are going to be so much better off for hearing this podcast and Chris you know from a business standpoint, if we have people listening to this that you know run museums run offices, want to learn more about how to work with you how best can we reach you.

Chris Downey: They can reach me through my website: www.arch4blind.com so it's architecture for the blind.

Nadine Vogel: Well, Chris Thank you once again, Norma this has been another great episode.

NORMA STANLEY: It sure has, thank you Chris.

Chris Downey: Well, thank you Norma, thank you Nadine.

Nadine Vogel: Absolutely for our listeners we look forward to speaking with you again on next week's episode of disabled lives matter. More than a podcast it's a movement, and we want you to join us, see you soon.

NORMA STANLEY: Have a blessed one.

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Disabled Lives Matter

Season 1, Episode 11

Co-Hosts: Nadine Vogel & Norma Stanley

Guest: Joe Travolta

Intro: [Music playing in background] Disabled Lives Matter… here we go!

Voiceover: Hello and welcome to this week’s episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley... yay!

Nadine Vogel: Well, hello everybody I am Nadine Vogel your co-host of this podcast disabled lives matters, and as I’ve said many times over, this is not just a podcast this is a movement and helping me in this movement is my co-host, Norma. Norma say hey to everybody.

Norma Stanley: Hi everyone, welcome to disabled lives matter.

Nadine Vogel: Yeah well, you are going to find our listeners that disabled lives really do matter when you hear from our guest today. Joe Travolta, Joe you know you you've been a teacher and you know, in many ways, I think you still are a teacher, but what I’d love to do is have us start with just some background, you know talk to us about how you came to be what you do today, which is with inclusion films and partnership with options for all and futures explored and working with kids with disabilities and adults with disabilities, but I think it all goes back sometimes to how we start so Joe take it away.

Joe T: Absolutely well thanks for having me here today and yeah, I came from a town in New Jersey kind of a blue-collar town, and I promised my dad growing up that I would go to college and finish it. I didn't want to go to college, but I promised him, I would go. So, we came from a blue-collard town, we had a tire shop that I worked at and I loved working with my dad. My dad was the most inclusive, kind man that I’ve ever known. And the gift that he gave to us as kids was inclusion and diversity, everyone was welcome in our house. Everybody was the same, what all religions teach my father had naturally. And as I said, I promised I’d go to college, so I did, and I finished it and my dad was always the underdog. When I was going into teaching the field that was open was special ED and two of my good friends growing up were special needs.

So, I just kind of was a protector of them, you know I mean we teach each other, but nobody else was a lot like that. And I went into that field and I taught for a short period of time, because I was putting all my money back into the kit. As I said, I promised my father I’d go to college, I went to William Paterson, two year college then I transferred to the state college, it was Paterson State at the time, and I think it sounded too much like a prison, so they changed it to William Paterson that's my feeling and I wanted to go into teaching and special ED teaching was the hot, there were a lot of jobs in specialized teaching so that was the track that I got on and I got my degree and I taught for a short period of time. There just wasn't enough money for me to survive because the kids in the school systems need some needed some, I taught in an orphanage for children so I was literally using my paycheck to buy supplies and do things that I really loved it and I knew I would get back to it and I come from a showbiz family, but when I was teaching back then I used theatrics. My mother was a drama teacher, all my brothers and sisters were in theater I was really the last one to go into it. But I, I learned that way I had this theory about kids watching TV. If you could, if you watch they watch TV for four or five hours and back then the only have three stations back in the late 60s early 70s and my theory was if they could sit and watch TV for five hours and not get bored and know all about it, if I could make my lesson plan that interesting and teach by drama, you know, I would perform, I would perform my lessons, but it was a lot that all you know all day because I had I had like you know 15 kids on 15 different levels and I, so I started singing and I got a record deal and actually in Atlanta Georgia Norma, my first visit was to that city, because I had a number one record at the station down there and I went down to visit, and you know it was a whole different you know coming from New Jersey to Georgia and 1978 was a was a very different just very different and I love going down there, it was right at that time that CNN one stared. So, I started after music from there I was I started acting but I always was writing and creating projects and eventually got into producing and then directing and I think it's the reason I do what I do now, I didn't want to direct. I had this project that I wanted to do and the guy that was funding it said, I would really like you to direct I said I want to direct when and what he goes no you do, because you know how to work with people. As a producer whenever there was a problem iron stuff out whatever it was. Because even the first movie I stared, I got to know the craft services, I got to know the PA’s, I wanted to know what everybody did. And what I loved about filmmaking is you have all these people working together for an outcome and it became like a family and when the production was over, everybody went on their way, but during that period of time you felt like you were part of something. So, I'll get to that a little later.

Nadine Vogel: Well, and I think that's important because you have created something, something quite big and something quite meaningful and definitely what I would consider a family like no other. So, I’m wondering if you could share a little bit about what you're doing now.

Joe T: Yeah, well eventually I knew I would get back to it and there was this group called the entertainment industry, no, the entertainment experience, and I was directing a film and the producer asked if I could put some of his kids in the film. And I said yeah sure no problem, and I said, you know this is kind of cool I’d like to do this. Not with specialize ed in mind, but with teaching kids because I loved it and I had an office to do my production company, and then we could teach kids and my daughter had a film festival at Chaminade high school out in West Coast California she asked if I would help her with her festival, and I said yeah, I said I’ll get you publicity and I’ll give you camps to give away an acting lesson and whatever. And an article was written in a newspaper called the acorn and it mentioned that I was a former special ED teacher and two parents with children with special needs autism approached me and said hey would you open your doors to special needs, because the doors are being shut. Nobody gives them an opportunity they're not included, and this was in 72 73 and I said sure, I said, you know why not, I have the teachers I love this you know we can do it. And in that same conversation, one of the mothers wanted her wanting to know first son could submit a film. I said sure if he's in high school, those are the rules. You just have to be in high school in the area, and I said what's the film about and she said it's about what it's like to be autistic from an autistic kid’s point of view that's really cool. I said well why don't you send me the film and I’ll get it in the film festival, and she said he doesn't know how to make a film he's never made a film before I go okay well that’s a problem. So, I met with him at all kids six five with big blonde curly hair and not that interested, very articulate, very high functioning. But I saw the whole demeanor changed when I said all right I really like this idea, this is what I’m going to give you a camera man, I'm going to give you an editor you have to do all the work you have to get the people that you want to interview the moms the dads the aunts the uncles. And the kids on the spectrum and you have to conduct the interviews and then I’ll mentor you. So, I you know we did that and, as we were cutting it together man, this is kind of cool. I called the Daily News out here in California and they love the story so much they did a feature about it. Then the week that we were we were doing the festival, we were expecting like 50 people. They ran another article, the day of and we had 500 people come. ABC news came down and they covered it, and that was where it really we had been doing classes for special needs, but this little documentary I got a call from Oakland University in Michigan and said hey we hear you doing camps for special needs kids, you know, would you consider you know we just got a grant. I said well how much of a grant did you get. I said ok, I'll call you back in five minutes, so I called, and I figured out how I could do it, I said why don't I come and run it. And that was the start that was like 2006 and then in 2007 I took that camp concept and created an adult program for adults with developmental disabilities and it's a filmmaking program and we've been doing that since 2007 and we have seven studios around the state of California and they go year-round, and our big push now is to employ folks that are nuero diverse.

Nadine Vogel: Absolutely, wow, that's you know I’ve kind of known the story, but hearing you tell it and just you know I’m captivated is if I knew nothing about it. It's such an amazing story and what we're gonna do now is just a quick commercial break but when we come back let's talk about that let's talk about the employment of people with disabilities and specifically those on the neuro diverse spectrum. So, everybody hang on to your hats we'll be back in just a minute with disabled lives matter and Joe Travolta.

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Nadine Vogel: Hello everyone and welcome back to the second half of this evening’s episode of disabled lives matter, I’m Nadine Vogel your co-host with Norma Stanley. And today's guest Joe Travolta. And just before we went on break Joe you were talking about how it really came to be that these camps that that you run for people with disabilities film camps and specifically on the autism spectrum have really transition to this issue of employment, and what that means, so I wonder if you could talk about that a little bit.

Joe T: Yes, well before I was directing like two movies a year and the one thing that I was noticing, I learned filmmaking from being an actor I didn't go to school for it, I went by seeing, the lucky thing was I stared in my first movie and I had never been on a set before so I was intrigued by it and I love the camaraderie and I’d want to know what the grip did what the electrician, there were so many, usually when you think of film you think of producing, directing, acting, and writing. Those four, but there's a world of jobs in filmmaking. There's accounting, there is set building, there's makeup, there's driving, there's food there's everything that goes into everyday life goes into filmmaking, so I thought to myself, while we had a slate of films that we are going to do, I said thinking to myself wanting to be a cool thing to start a workshop. Not for people we haven't gotten a special message yet so what, how great would it be where when I do a film someone can come on from day one, when we break the script down when we budget at when we schedule it when we go for locate casting. To be able to go through it and learn the way that I learned it all the way through postproduction. And this had always been in the back of my mind. And we're funded through the regional centers in California, they pay for the folks that are in the adult program. And I was in a meeting with them, one day, and at this time we're redoing camps and acting classes, so we weren't it wasn't down that vocational route. And in a meeting with the head of the regional Center she said we're going to have a tsunami of young folks with autism, they're going to be coming into the workplace and there's nothing for them she said do you have anything. And I said well as a matter of fact I do. And I pitched them the practical film workshop, and then in 2007 we did a pilot, and you know we took like 10, 10 young people with developmental disabilities and we created the script the concept of the program is to teach them each thing, but we develop a script and then we produce the script and shoot it and edit it. And then that project becomes the lesson plan, and you just apply all the things that you've learned, that's what it is today so then once we started, I started one in Bakersfield and my partners that did the camps, they wanted to start one where they are so we went up to the east bay and then Sacramento then options for all came into the picture and we develop programs with them too and that's what we've been doing, you know pretty much the last since 2011, 2012, so it's coming on 10 years that's all the other branches started developing.

Nadine Vogel: I think what, you know, Norma this clearly illustrates that Joe you know he walks the talk however you say that. Because it's really the work show that people with disabilities do matter and they can work in all of these aspects of the entertainment industry, the film industry, that you know I think people don't think about.

Norma Stanley: Absolutely, and I think so awesome that you know you coming from a famous family just in general that you even take the time to you know, to give of yourself the way you do because I mean that was something that came naturally to you, but it was still something that's so important to the community, and I just think it's a beautiful thing. And these camps, are they just in the California area around the country because I think we share our children with that.

Joe T: Yeah, well the adult programs are in California and they're year-round. The camps there from life like 10, 11 up to 21, whatever they when they age out but we've done camps in Florida weekend camps in Arkansas, New Jersey, Pittsburgh, Chicago and then Northern California, San Diego we've done them so.

Norma Stanley: We have to get you in Atlanta.

Joe T: Well, I’m actually talking to some folks in Georgia about doing something down there so yeah. And all well, in the film industry actually there was a movie called the poison rose that my brother actually stared in but the producers of that show, we've been friends, I got them started in the business. And John came on to the scene even before we had this conversation, but we sent five of our folks to Georgia to work on that film and they were there for I think a good month. And they stayed at a house all together. Two of them, and it was really nice because my brother kind of looked out for them while they were down there. He said they were the best crew members that they had, and we actually have a nice little tribute that he did to our folks and two of them became Union eligible.

Nadine Vogel: Isn't that fabulous. So, Joe, tell us if you will a little bit about your, I think it was just released in December, Carol of the bells. Because recollection is that I think 70% of the crew on that film was made up of the students that that you trained.

Joe T: Yes, yeah, again, about talking the talk and walking the walk, I have four employees that are neuro diverse and they're my best employees to be honest. You know they show up on time they're the first ones there they leave their early and they leave late and it's a great thing to see when you train somebody and then they apply what they learn. So, I went to my partners, and I said look let's do a feature, you know you have me as a director. I'm not going to get paid as a director, so you have my services for free, we’ll each throwing some cash and let's make a film where the crew is made up of people that we train so they're always talking about outcomes and the special needs feel. What the outcome from the camp what's the outcome from this well the outcome from this is that we created something competitive of value and showed that we did this in 12 day. You know, look at what we did in 12 days and you know we used we went through screen actors guild and we got a few names in their RJ Betty from breaking bad was our main star and Donna Pascal from Saturday night fever was in it. Donna Mills and Lee Purcell and really, you know, and the great thing was going back to why I became a director is I make it feel like it's a family. If you're a PA you are as important as my biggest star or the or the cinematographer, everybody, and when you treat everybody like that they buy in, this is their film their a part of it and they're going to work harder and you know they're going to care about it and I, you know I’m tough, a little bit tough, because my expectations are so high, but the nice thing about the production company because we do documentaries, we do commercials we do PSA is like minor league baseball it's professional they get paid but it's where you can make a mistake, or you know you get to grow, you get to cut your teeth, so when I pitched I said to production company you're getting me you're getting my pros but at the same time, those monies you're going towards employment and if there's a format pro three of them will be folks that we trade show to wait for them to. To get ready for the fields and be ready to go.

Nadine Vogel: And what's amazing is, and I think that it should illustrate how talented these individuals are if that films like how the bells I mean it's been you've received awards they've been featured film festivals. This is not you know some charity side project, and these are just ok. This is important stuff yeah.

Joe T: Yeah, and they did a, we made 25 minutes behind the scenes that cox communication played all over the country and PBS picked it up so it's you know, I want people to see what I see.

Nadine Vogel: Right absolutely. Now I know that we don't have much time left, but I did want to talk if we could just a minute about the delivering the jobs campaigns, because you produce them.

Joe T: Yes, yeah, so two years ago they were delivering jobs as a partnership between Special Olympics autism speaks and best buddies. And the entertainment foundation that's been around for years they're the ones that are like putting this whole thing together and I get a call that they're doing this PSA and the PSA was a utopian world where it's a natural thing for people with disabilities to be employed. You know whether it's in a coffee shop whether it's an art gallery or whatever and they were making this big PSA at 20th century fox big Union shoot you know, there was a you know 7500 people. So, but all most of the cast that were featured were special needs, so I got a call they asked If I have any crew members that would want to work, I said absolutely, what do you need so they go, we need someone to grab we need someone in electric we need someone in craft service and the end of the day, they had six of our folks who are hired at Union wages for this day working. To me the PSA what was happening behind the scenes, because they were hired to do skilled positions. That was the story to me, so I said who's doing your behind the scenes and they said well, no one, and I said well, why don't you hire me to the behind the scenes I’ll interview all the kids the actors and everything and you'll have this beautiful thing. Because what they do is they take that behind the scenes and that's how they get the free advertisements they got sponsors from around, so it went so well that the next year they hired us to do the PSA’s, so I directed the PSA and the behind the scenes and again 70% of the crew was made up of our students. And it's doing really, really well, which was exciting to me because we didn't have the budget that they have. But you know and again it's getting that word out and Sharm is one of the partners there a what they call that. Their HR and you know that's the big thing with HR that's where the education is. They have to learn that it can work, and you know each time you do something like that, and people see oh wow this is kind of cool and you know and I don't lose anything from hiring the people that we've trained. I don't lose any of it. And how much do you gain, you know so that's it that they're more than students their teachers. So, they teach us you know they teach us tolerance, they teach us patients they teach us understanding and we need a lot more of that with what's going on in the world.

Norma Stanley: Absolutely.

Nadine Vogel: You know, in the corporate space we refer to it as reverse mentoring. Well, I am sorry to say that we are out of time. Joe, you know I am a raving fan, we’ve had many times and I just even more after this interview. Norma.

Norma Stanley: Thank you so much, I’m so excited about meeting. You know I’m a big fan of your brothers always have been, great dancer, but yeah, thank you for being on the show today.

Joe T: I gotta tell you a story really quick. The guy is from Georgia lease containers and his son is on the spectrum and he he's going to be coming to our program and the father said, you know I got to tell you something. My son, he's a big John Travolta fan so he's going to ask you about john right away. So, I said don't worry about it, I said that's okay, so we did a zoom and before we even started his name is john to I said john I gotta ask you a question what's your favorite John Travolta movie. So, I took that out of it and boom he right away, it goes all of them all of them that's the right answer.

Nadine Vogel: Oh, what a great way to end today's session Joe, thank you for everything that you do.

Joe T: My pleasure. Norma so nice to meet you.

Norma Stanley: Thank you so much, let me know when you come to Atlanta.

Nadine Vogel: He already told me he’ll have to tell me when he comes down to Florida. Alright, well again, thank you all of our listeners for another great episode of disabled lives matter because it’s not just a podcast it is a movement and people with disabilities do matter. Right Norma.

Norma Stanley: Absolutely. See you next time.

Joe T: All right, take care.

Nadine Vogel: Thank you. Bye-Bye.

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Disabled Lives Matter

Season 1, Episode 10

Co-Hosts: Nadine Vogel & Norma Stanley

Guest: John Kemp

Intro: [Music playing in background] Disabled Lives Matter… here we go!

Voiceover: Hello and welcome to this week’s episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley... yay!

Nadine Vogel: Well, hello everyone and welcome to tonight's episode of disabled lives matter, this is not just a podcast, this is a movement. I’m Nadine Vogel your co-host along with.

Norma Stanley: Normal Stanley.

Nadine Vogel: My amazing co-host from Atlanta, we are having so much fun doing this on a weekly basis, and we hope that all of you listeners are having as much fun and learning as much as we are actually doing this, so today's guest is the amazing the wonderful John Kemp, a very dear friend of mine, and someone that I think will illustrate so clearly why disabled lives do matter on so many aspects of life so john welcome to the podcast.

John D. Kemp: Thank you Nadine and Norma it's very nice to be with you as well.

Norma Stanley: Thanks for being here.

Nadine Vogel: So, let's start with just you know, obviously you're President and CEO of Viscardi Center but you're an attorney I mean you've done so much do you want to give us just a little bit about who you are what you do what you've done.

John D. Kemp: I’d be glad to, and I have to say that I was born with my disability, which is a distinguishing feature for the disability movement is really about 17% of people with disabilities started their lives with a disability, and so, most people with disabilities acquired their disabilities along life's path. And that does affect I think how we look at life and how much people have to go through an adjustment if they acquire a disability and it's all sometimes very new in fact disability is usually new to everybody and their family members. I think there are some tremendous parallels to other movements, especially black lives matter and, as well as some very unique pieces to it but when I was a little guy, my mother passed away of ovarian cancer, when I was 15 months old and three months after my little sister was born, so my dad had three of us kids five years old 15 months old three months old and just kind of put his smarts on and decided that he was going to make my life as fulfilling and all three of our lives as fulfilling as possible. I went to regular schools; I had my difficulties in keeping up. And my dad actually distinguished between a disability and handicap for me at that point in time, this is, many years ago. But to really say that if people don't like you for the way, you are the way you were born, then you really don't need to like them. And it was you know they either have to see you as a person eventually get through it, helped them get through it, but they have to see you as a person or if they're never going to get it so anyway grade school high school Catholic schools have a lot of newspaper bumps in the back of my head for not paying attention enough. And then onto Georgetown and then law school out in Kansas and worked as an environmental lawyer and then get into the disability rights movement really early and stayed I’ve always stayed with it, since the 70s and so it's been a great, great part of my life.

Nadine Vogel: So, thank you John, can you share with everyone on what your disabilities are.

John D. Kemp: Certainly, I was born without arms or legs off at the elbows and the knees, so I don't have elbows and I have one of two knees, and so I wear prostheses. And when people look at these, especially when I get on a plane, they say something like you know they make hands now don't you, you know. This is the, this is the power of television and communications, you know, everybody has seen the latest gizmo and gadget that's up, and so they want to tell me that, so it does start the conversation. And I know I could probably get hands, and I could get all these high-tech things and I bumped into a door jamb and it doesn't work and I’m miles away from my technologist who's going to repair it, so I kind of like my good old school stuff that works all the time and can be self-repaired it really doesn't define me.

Nadine Vogel: I get that a lot that although someone's disability maybe a big part of who they are, it never should define them that's I think that people need to really come to understand that and I’ve heard you say John, that life is a series of transitions and a little bit about when you say that because I know that when you said that you've also said it's not about the transition itself, but rather how you navigate those transitions.

John D. Kemp: Right, you know Nadine, having federal law transition planning as a requirement under the IDA for disabled students, so when they turn 14, they're required to school districts are required to offer them transition planning services. Because I as part of the Viscardi Center run a school here for medically fragile kids who have absolutely intense medical needs technology needs in the rest we start transition planning in kindergarten. So if a kindergartener says, I want to be a firefighter, we say, well, what do you think it's going to take to get be a firefighter and they look around, I think I like I don't know you know. But it we start we start them thinking about what it is going to take, and we really work early on, about making sure that they get as good an education, as they possibly can get because for a lot of people with disabilities, especially severe disabilities and education is going to be an important component of the rest of their lives, so, you know, getting as much as they can, as part of it. The transition, I just want to go back to your first moment there and say we're always transitioning we're always transitioning so you know it's funny that IDA says at 14 get a start talking about transition planning well, going I remember my first day of going to kindergarten that was a huge transition, I was crying the whole way I didn't want to go to school, I love being at home playing. What’s the school thing I have no idea what that's all about. And then, it was you know to high school and we moved from one part of the country to another, and people had to get to know me as a disabled kid in school in a Catholic school and then to college at Georgetown and you know just on and on it's always, we're always transitioning.

Nadine Vogel: Absolutely and Norma, I mean you know your daughter has significant disabilities So how are you feeling about this.

Norma Stanley: Well, I was just wondering, you know my daughter doesn't talk she was born with cerebral palsy she has um you know challenges in terms of her you know intellectual capacity, I was wondering, she was in she was in special education, she wasn't part of a typical program. How did you handle and how was there a lot of bullying back then as there seems to be today with children with disabilities, especially know the ones that are visible? Kids today, I don’t seem to think that they are very sensitive when my daughter was young, which is 30 years ago, it seemed to be so much less sensitive. What was it like for you and how did you and your father handle that.

John D. Kemp: I think you're right Norma and I’m, sad to say that you know and I’m sure you are today to observe it because we should be evolving into a much more sensitive more accepting more tolerant society and, especially, as people become who they really are and they're out and proud about who they really are and we've just seen a guy that was on one of the TV shows say that you know, he was on a dating show and he ended up admitting that he that he's gay it's like there’s nothing wrong with being gay there's nothing wrong with being different there's nothing wrong at all. But yes, I did get some bullying and it was really hurtful and I come back, and my dad would give me the kind of the pep talk and put things into perspective. But you're I do think you're right and honestly, now that you're going to think this is really weird i'm not i'm outing my own students here. But we have an Anti-bullying program at a school where there are only kids with disabilities really severe medically fragile kids attending here and they will believe each other and I look at it, I go I literally sit down with them, and I say really, you know if they're you know you of all people and me, we should understand what bullying feels like and we should never do this power play on other people. It is unfair and it's unjust, so I give them the web, for they are we have programs, but we, we have lost ground in this area and I couldn't agree more with you it's not good, and hopefully by programs like lives matter all lives matter disabled lives matter Black Lives Matter that we are trying to get back to a point where we're educating people about everybody brings value to this world.

Norma Stanley: Absolutely, one of my challenge and know how much of this is taught, is what I wonder, because it doesn't happen that you just don't pay other people of other ethnicities, they don't they're not born that way you're not enough born with it in have any everyone thought and happen, we can teach it both kinds of things that are keeping us separated from each other, is there a way to teach it do you think.

John D. Kemp: I absolutely think discrimination is taught I think power playing is taught. I think we've gone through an era, please forgive me for being a little political here we've gone through four years of a bully President, who really did not set a good example for this world and all the sudden we've got white supremacists, primarily males who think that they're better in some way and they're threatened in some way by anybody else getting a fair piece of the pie. And it's just nonsense, but we did not get good leadership, and I think it starts with leadership and, second, stating your values clearly. And being very clear about what you will tolerate what you will not tolerate and taking action on it, so we stop it, we stop it where we see it and we take appropriate corrective action you know you praise in public, and you, you talk to people privately about what it means, but it this this has to be managed and stopped and it has to be leaders that represent our value structure.

Nadine Vogel: Absolutely, because what we're seeing is you know it's permeating into the workplace. And, and you know I always say bullies grow up. They still believe it comes across a little bit different but it's still bullying and harassment and I'm not sure how to stop this other than John, you know with education and doing what you can, and I think that it at Viscardi I mean obviously you're a role model for these children. But, talk about you know your journey to this school because I think if I recall correctly, you told me that you had met Dr Viscardi at some point so can you tell us a little bit about that and the impact.

John D. Kemp: Absolutely, it is it's one of those really wonderful, you know happenings in my life, and I grew up in Bismarck North Dakota right so, we have two seasons in Bismarck it was it was winter in the fourth of July that was it alright so and I’m walking around on artificial legs on snow, like all the time. And I get picked to be the national Easter seal poster child because I went to an Easter seal camp, when I was seven and at nine they wanted me to go around the country and they saw I got picked I go to Chicago go to the bank with the keynote speaker is Dr Henry Viscardi and he's five foot seven wearing artificial legs and he gives this incredible speech about the inequality that people with disabilities face and he's taking his speech and he's ripping in shreds and he's throwing it in the air and he’s 42 years old and my dad puts his arm around me because I’m going to be presented as the next the next national poster child and he goes, you can grow up to be like him someday. And I’m nine years old, looking at this guy and fast forward to 10 and a half years ago and I’ve chosen to be the fourth CEO of the Viscardi Center. It was called abilities then, and we changed the name to honor Dr Viscardi the school is named Henry Viscardi school and you know, he was a man way ahead of his time. And a very fair and very firm guy and a very charming guy so I’m just honored to carry his legacy forward and very, very proud to have known him.

Nadine Vogel: So is that what got you to leave your law firm in DC and take this on was it just so such an amazing opportunity, what else was behind that.

John D. Kemp: Well, there's, there's a little bit more my very good friend, Paul Hern who is very active in the disability rights movement and Grad graduated from the Henry Viscardi school. Went to Hofstra which the scarf Viscardi himself had helped make accessible 40, 50 years ago. And the school was one of the three or four in the country that were really physically accessible to people with who needed physical access, So Paul and I became fast friends, when we were in our 20s and we were traveling around the country giving disability rights speeches and we'd always end up at the same place and then we'd end up in the bar having a beer together and we, and we were always having a lot of fun and we ended up in Washington DC together in 1990 and we're both running organizations and so when this eventually came open this has always been a beautiful position that a lot of people in the disability movement have known about. But it's it was Dr Viscardi than two non-disabled people and then this came calling to me and I said this this place has got to be run by a person with a disability, we have 400 employees three corporations, they have a school, we have an adolescent and adult services, we have an international oral health program, a Center for disability entrepreneurship, we're doing a lot of stuff and it's got to be led by to me it's got to be led by someone with a disability.

Nadine Vogel: Absolutely well on that note what we need to do now is just take a short commercial break, but I want people to stay in their seats don't go anywhere, because we have more to share with you from John Kemp, be back in just a minute.

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Nadine Vogel: Ladies and gentlemen, welcome back to tonight's episode of disabled lives matter. Norma I are here today with John kemp and really talking about real issues for people with disabilities and clearly to illustrate that disabled lives do matter, so Norma take it away.

Norma Stanley: I would just want to and you're just describing you know what the Viscardi Center does and all that it's doing for the disability population and the people that you serve, and I was just wondering, is it true because I’m from New York, and it seems that New York is like miles ahead of other states when it comes to providing services for people with disabilities, a separate issue the subway system seems like they have it together they kind of thought things through and providing services, but a lot of other states do not I’m in Georgia. Oh, my goodness, speak a little bit about that.

John D. Kemp: I will Norma, you know the toughness and the resilience of new Yorkers and you know it's they're never satisfied with the status quo, and I think that's a really big positive and that's what most advocates, especially with disabilities should adopt. You can't just accept where you are because we're still not equal yet and New Yorkers are not afraid to speak up, even though they may not get their way they're fighting for it and they're fighting forcefully. So, they understand politics young disabled people understand the power of politics, and I think we're seeing more young disabled people getting into politics in New York, and I think our leaders without disabilities really respect the Disability Rights vote and the movement this is starting to grow across the country and eventually I know a bunch of great leaders of disabilities in Georgia they're gonna go to leadership spots and you would be one of them. Our voices have to be heard our issues have to be heard.

Norma Stanley: Absolutely, absolutely getting louder and we do have some great leaders here in Georgia, I just happen to notice at New York my daughter was born to be added to nurture and notice it and then move back to New York, but no, I want to learn and share, we can share with the people here.

Nadine Vogel: Right, John I think you're right, I mean the issues, not only have to be heard. They have to be listened, they have to be acted upon you know people can, can’t just listen, you know hear this information, and then, when they walk away it's like they never heard it. And so the things that you're doing that the organization is doing are really illustrating this so can we just touch a little bit on this guardian project for accessible oral health. Because right, this clearly shows that disabled lives matter, but it also shows that there's something missing here that is so important that we touched on, so what you touch on that for us, please.

John D. Kemp: I sure will and I appreciate you, bringing it up and with a daughter that has cerebral palsy and may affect her ability to have to receive good quality care oral health care we've learned that it's there are so many people across the spectrum of disability that have difficulty getting access to good oral health care. Whether it's autism on the spectrum there or people with cerebral palsy just finding and getting a doctor a dentist who will see you. And it's taken a lot of litigation and maybe short of litigation, a lot of advocacy to get the American dental Association and the profession to pay attention to us as patients and way too often people with intellectual and developmental disabilities are bust into in in groups, big buses, I mean I’m literally saying buses bus to a an emergency room of a general hospital waiting in the waiting room all day, to be put under general anesthesia to have their one checkup and there dental care provided once every one and a half to two years, well they've got problems that have built up, they are sick. It affects heart lungs brain it affects your whole body, if your mouth is clean the rest of your body's going to be cleaner. So, it is just entirely irresponsible that this has gone on so long and we said we're going to fix it, and that means changing the reimbursement rates for Medicaid for adults to get services and dentist to get paid appropriately if the financial reason is, I only get one unit of reimbursement. And I might have to see this child with autism five times, and then the natural reaction is I’m going to refer this person away or I’m just going to deny. Now they're under an obligation to refer to a dentist who will see them and they can't just deny the services but it's optional for adults over 21 to get dental services on a state-by-state basis only 17 States require, have adopted a dental health care for adults with disabilities, all children up to 21 gets service dental services.

Nadine Vogel: Unbelievable, what at 21 they suddenly you fall off the cliff.

John D. Kemp: Exactly like what’s so magical about 21. Your teeth are all fine for the rest of your life, no.

Nadine Vogel: Right, I never understood it is so many things that this country says, you know what either 18 or 21 X happens and I’m thinking I don't understand who picked that number out of the air and decide, you know, for instance, you know children with disabilities, you can be on your parents healthcare till age, I think it's 26. What happens in 26 poof you know when Gretchen turned 26, she didn't suddenly become a different person and her disabilities didn't suddenly go away, I just I just don't understand.

Norma Stanley: And to tell you the truth, we have a Center here in the Atlanta area that they're overwhelmed this is a nonprofit and they'll overwhelmed to try and come to try to help people, not just in Georgia South Carolina, they can’t find consistency to take care of their children and like you say after a certain age, you know they don't they just fell off the cliff altogether so it's just really sad that you say only 17 states right now.

John D. Kemp: You know, to the to the title of your program Nadine, this is the devaluation of people with disabilities, when there are policies that are allowed to exist that make it an optional service, oral healthcare under Medicaid for adults with disabilities, that is devaluing in public policy that's just intolerable.

Norma Stanley: You know the same thing goes on for sexual health for people with disabilities, for woman particularly.

John D. Kemp: Absolutely. When these busloads of kids go into the hospital and get their general anesthesia and debt and oral health care needs, they're also dealing with the Ob gyn services for women and giving them haircuts. It's like wait a minute, this is like cattle you're treating people like objects and one. Every year and a half to two years you're going to bring them in put them completely under and then do these things that they should normally get on a regular much more regular basis and on a preventive basis as well because.

Nadine Vogel: It's beyond me that we are in 2021 and these things are still allowed to happen, I mean look how many organizations are still paying people with disabilities below minimum wage significantly below minimum wage, I mean and still getting away with it, no less. And again, I know another whole topic. But the John, another thing I wanted to ask you about is people with disabilities, not as employees of companies, and we can talk about that. But as entrepreneurs as business owners, as people that can provide for themselves and in doing so, actually provide for others, as opposed to the other way around, so can you touch on that a little bit.

John D. Kemp: Oh, I love ya. I love it I love you for phrasing it and Norma, I know this sparked your interest as well. You know this was the gap that some organizations and schools sporadically would address very on a on a very good and basis that was entrepreneurship. by people with disabilities to be a person with a disability, an entrepreneur that was always a consequence of discrimination in the marketplace and the world in the workplace couldn't get a job. I get too much pride I’m going to go back home I’m going to open up my garage or my fourth bedroom or third bedroom and I’m going to fix hearing aids or wheelchairs or I’m going to do something to sell on eBay I don't know what I’m going to do, but I’ve got too much pride and I need to I want to make some money. Well, we've sort of tried to lift that whole area up and create a very dynamic robust curriculum. That is an eight-month long program that's sitting on top of a fully accessible platform, so that, as we deliver this through social through social media through technology to people across the country, and we have said, 12 to 15 people in each year's cohort we're in our second year now. And so, anybody with any kind of disability can participate in this program and we will adapt the Program as much as possible to make sure that it fits their needs, but the idea is believing in yourself believe in your idea. Give them tactics and access to funding or capital and credit and take away some of those barriers and start removing some of those barriers that allows them to flourish, you know, we did a shark tank kind of a thing called a pitch fest at the very end in October August November of last year of 2020 and we had contributions so that every person got something but somebody got $25,000 winner with their idea cooked out another was this and they range from the ideation stage to a business that's maybe making half a million dollars to a million dollars, but they want to replicate it in another part or franchise it and they didn't know how to do that part of it so it's from startup to wherever you are in your journey as a as an entrepreneur it's great I love I love it all.

Nadine Vogel: We need to get you know somehow; we need to get this program to be featured on shark tank how cool would that be.

John D. Kemp: Wouldn’t that be great.

Nadine Vogel: That's my new my new idea, I have a couple people I’m going to call, we need to talk about it.

John D. Kemp: That is great I love the idea, and you know I think they that it would obviously get it to the general masses because that's what people need to realize is that an entrepreneur is an entrepreneur. But if you have a disability and you're denied access to capital and credit which, may I say, is a is a function of policy. Which devalues people with disabilities, so you have to spend down your assets to qualify for Medicaid right and social security.

Nadine Vogel: Yep, two-thousand dollars.

John D. Kemp: So that's all you're allowed to keep so that's only that's all you so from a public policy standpoint, it is devaluing the lives of people with disabilities by making it so difficult and then you're going to start a business with $2,000.

Norma Stanley: Right, and this is another area of intentionality with black people because we don't get the same opportunities for attending and capital as typical businesses and so that's part of, and woman, in general, but again there's another intersectionality moment where it needs to be some change.

John D. Kemp: So right Norma so right, you are so right, you could change out the words and the and the impact is the same public policy is devaluing black lives and women's lives and people with disabilities lives yeah.

Norma Stanley: An entrepreneur is an entrepreneur why can't we all get along.

John D. Kemp: Rodney was right. His question was right.

Nadine Vogel: Well, and the thing is, is that if we enable like you're doing if we enable individuals with disabilities to show their ability. Right, to become successful entrepreneurs to work in not just entry level positions but management and senior level positions and companies. They then can serve as the role models for others coming up. Right, and I think that's one of the challenges that we have and one of the beauties John with you because you are that role model. You know, we need more, we need more and you're working to do that, but I think that's part of the problem is that you know, do we see ourselves. If you're someone with a disability, how do you see yourself in the future, will you look at others like you, in some way, shape or form and when that's absent you start devaluing yourself I, in my opinion.

John D. Kemp: Absolutely right, right and you know this, the Viscardi Center is run as an entrepreneurial business, we are entrepreneurial in every decision we make. Are we going to be able to pay for this, how are we going to generate revenue, how much how much loss, are we going to absorb before we can cross over to making a profit and when do you cut your losses and stop so we do run this as a as a business and entrepreneurial business but it's like a social enterprise.

Nadine Vogel: Well, I happen to know that some of our podcast listeners are in Hollywood and do have connections to shark tank so just putting it out there Shark Tank should come calling or we need to call them The other thing I’m thinking about again, because this is so important is maybe what we do John if you're in agreement is, we have some of your entrepreneurs, some of these individuals that have become successful with their disabilities and we interview them either on this show we put them on my TV program The Nosh again to illustrate to have more of these role models out there, that people can see.

John D. Kemp: We have incredible people I’m telling you I’m blown away by just watching how they progress through the year and then that pitch fest and how well they can present in seven minutes or six minutes, they get with their slide decks and their videos in there and what they're what they're talking about it's it would be they'd be great interviews.

Nadine Vogel: I love that, because then you know I want you, this is a saying that I know that a lot of people have used over the years on, rightly so, nothing about us without us with people with disabilities, so when we talk about disabled lives matter we should be talking to people with disabilities to clearly show, and I think that we have done that on just about every show we've had since it started the podcast. Right Norma, that’s something you and I have been committed to from day one.

Norma Stanley: Absolutely. there are so many great stories out there that have not been told, and we want to help share some of those amazing stories of successful people who are overcoming challenges and making it happen, and nobody’s really talked about it, you know, in the mainstream so we want to bridge that gap.

Nadine Vogel: Because I don't want, I don't want our podcast on to come off as inspirational. I want it to come off as impactful. We want to see change as a result of what people are hearing about and listen so, so in that in that vein, and I know we are running out of time John share with us a few closing comments, you’d like to make relative to how people can impact and influence change whether it's policy it's entrepreneurship any of the things we talked about today.

John D. Kemp: first thing I would say is that people with disabilities need to love themselves and they have to respect themselves and they have to feel that they're righteously worthy of being every in every place and in every activity always and if they take on that, then they can be of service to others, and they should accept the fact that they're going to be role models and that young people especially are desperate for role models to be able to look up to and to talk to, and they need to be accessible and make themselves available to talk to talk to young people and other people, a lot of newly disabled people even seniors who are newly disabled who don't know this world and it's a transformation, it is a transition and that we should be obligated personally I am to help everybody get along. So that's where I would start and I feel like this program does that very, very well and I really appreciate being on and being able to talk to both of you about my thoughts, but to share and listen to what you're saying as well, so thank you.

Nadine Vogel: Well, thank you John. Norma, I think this has been our best interview yet.

Norma Stanley: I’m loving it it's just I mean some extra like you said that was the goal of this whole process, and you know, making that necessary change and that's what we all want to be able to do.

Nadine Vogel: So again, thank you John. Thank you, Norma, you're an amazing co-host and another episode of disabled lives matter, we look forward to talking with all of you next week, on another episode. Remember it's not just a podcast it's a movement, and we need you to all be part of it see you soon bye everybody.

Norma Stanley: Bye-bye.

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates. The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advise and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast. The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or Listen Device.

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Disabled Lives Matter

Season 1, Episode 9

Co-Hosts: Nadine Vogel & Norma Stanley

Guest: Myrna Clayton

Intro: [Music playing in background] Disabled Lives Matter… here we go!

Voiceover: Hello and welcome to this week’s episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley... yay!

Nadine Vogel: Hello everyone, this is Nadine Vogel your co-host of disabled lives matter we are more than a podcast we are a movement, and I am so excited to have my co-host with me Norma.

Norma Stanley: Hey everybody this is disabled lives matter time and you're going to have a wonderful time today so let's get to it.

Nadine Vogel: Absolutely, and you know why we are going to have a wonderful time because we have the amazing Myrna Clayton with us today.

Norma Stanley: Yes, America’s songbird.

Nadine Vogel: So uh yeah I got to tell ya I mean I know you're a professional singer, you’ve been a US cultural ambassador but I want to hear about this songbird thing, how did you get that title.

Myrna Clayton: You know in performing, the songbird part came first before the American part came just kind of putting them together but songbird oftentimes when people hear me sing they’ll refer to me as a songbird and so we sort of just kind of stuck and because I perform abroad being known as being from America, it was America songbird because of you know, nationally, then I’m easily recognized as from America so that’s where America songbird came from just from the perspective, what the international travels that I do.

Nadine Vogel: got it got it well, I gotta tell you, you know we got to meet out in a few months back, and I remember we were both interviewed on a show and I got off that show and I thought wow how many different things can this one person do and have so much and not exhausted not anything I was amazed, so I really want to talk about show ability, I believe it was initially called able to. Can you tell our listeners what show ability is and what brought you to found this organization.

Myrna Clayton: Okay, well, first of all show ability is a 501 C three it's been around now for 12 years officially as a 501 C three for 12 years and Show ability is for people with visible and invisible disabilities and the support of people that love them, we are allies that uplift the gifts of people with disabilities so that they can be valued and appreciated for their gifts and their talents at the end of the day, we want to promote the talents of performing artists with disabilities. And for the audience's that come to see them, we want to very much so give them a place of being welcome and thrilled to be in the audience experiencing folks who look like them and showing showcasing their talent, and so our North star is to be for the arts entertainment industry, what the Paralympics and the Special Olympics are for the sports industry showcasing excellence and talent.

Nadine Vogel: Ok I like that. Norma, she’s one amazing lady isn’t she.

Norma Stanley: Absolutely, absolutely and I’ve been blessed to know her for a few years, I am also blessed to be a member of her board that.

Myrna Clayton: Norma is one of our board members and we’re so thrilled to have her, she is so dynamic.

Nadine Vogel: Well, I’m curious, the story that I’ve heard is that how you came to start this organization was that you saw I think a 10-year-old boy who had cerebral palsy and he was having trouble, I think, getting up on the pulpit in church or something to sing is that accurate.

Myrna Clayton: Yes, it was it was it was interesting because I happened to be there. And I saw him struggle to get up three steps, and I guessed he had cerebral palsy because he had the canes on his arms and he was 9 10 or 11 and I kid you not Nadine, when he started singing because, as you know, of course, everyone goes aw you know you feeling a kind of way about him struggling to get Into the space for him to be able to perform, but he got right up there and turn to the audience after he gathered himself and he began singing and he just blew the place out of the water, I mean it was so, I and I’m sure everybody in the audience forgot all about his challenge because his voice was so amazing and it's crazy because you know. I go on, I wasn't thoughtful at the time I was you know I didn't get his number because that wasn't that wasn't on my radar at the time, I was just admiring a talent, the person who had tell like I would admire anybody. And, but it just so happens that about five years later he crossed my mind, and I was like oh, he ought to be a teenager now he ought to be killing it, so I want to hear him today, and so I didn't know him I didn't know, I didn't have any connection with him, and so I began asking my musician friends, because I know musicians that play in orchestras or churches for party bands, for you know jazz ensembles. I know musicians across the gamut, and I asked, and no one knew I said, do you know any performers with disabilities, you know any singers with disabilities and out of about 30 or 40 musicians that I spoke to musician’s choir directors, no one knew anybody. And to me, I was like that doesn't make sense. Now, mind you, I have an MBA, and so I come from a corporate background that deals with new products and new business development, and so I know statistics and I know it sounds like that just doesn't make any sense that none of you know anybody that has a disability that sings I mean you're around singers you're around musicians and none of you know anybody and so at that point, I began saying okay obviously there's a need right obviously there's an opportunity and so we went from there. We had our very first show our very first event was a talent show and then that's when we got into the space of recognizing that oh wait a minute per person with disability can't get on stage because stages are not accessible or green rooms not accessible tech areas are not accessible so that again that wasn't on my radar so I was like wait a minute what do you mean we can't get on stage and so things that are ADA, ADA doesn't cover that kind of stuff. So at that point, I became, not only a lover of talent, but a serious advocate because there's some basic things that we don't, because from childhood, I say we're taught not to point and not to stare so we don't it doesn't come to our mind it's not a part of our consideration set and so as a result, we don't even think about the fact that oh you don't have that. The next question is well why you don’t have that. So it's just kind of like what? You know, just some intuitive things that we take for granted and unless we're in a situation where you're, if you happen to be where you're a parent with a child with special needs, or have a disability, then at that point you're like. Oh no my child needs to have this child needs to have access and if everybody else has access, then we should have equal for it certainly equity access as well, so at that point, I became a fighter because my talent couldn't get on stage.

Nadine Vogel: Right, well and that’s the challenge right Norma.

Norma Stanley: Absolutely and we know as parents, Nadine and I both being parents of children with disabilities, I mean you become an automatic fighter because you wanted to make sure that your child doesn't miss anything and other families and children, like ours, so we are automatically it just it's just part of who we become. And you know I love the fact that what you're trying to do for performing artists and for families like mine, who I like to go and visit and watch and participate in all of those things to you know that you're trying to open up zoom as an accessibility for this Community.

Myrna Clayton: It's so funny if I can kind of jump in because, because we had Artists with disabilities on stage, then of course we would have disproportionately more audience members on the disability spectrum and facilities aren't prepared for that either. I mean, I had a security guard come to me and say ma'am if you have one more person with a wheelchair come in there will be a fire hazard.

Nadine Vogel: Oh, my gosh.

Myrna Clayton: Well, where are they to go, I don't know what the lobby, but they can't be in here and so after some expletives. I was like hey, this doesn’t make sense because they had they had space for three wheelchairs three and you can go someplace you can't if you come with a person than the person you can't sit with the people you come with me there's so many. So many hindrances and barriers that again the plate the facilities aren't thinking about and that's because I guess there's not enough of us raising hell to say to hey, we're paying, we have the income to buy a ticket, you know we've got the give us the access give make things accountable and accommodating for us. You have an accountability to us as you're paying customers.

Nadine Vogel: Right no, absolutely and I know that you know, accessibility as we're talking about it, is critical. So, I think I mean I realized that with show ability it's not just one thing you have a number of layers number of components to what you do. So one of the ones I know I want to ask you about was your inclusive chorus. Since you're talking about accessibility and inclusivity, could you talk a little bit about that.

Myrna Clayton: Absolutely, you know I’m really excited about that, because that chorus we started last year during the pandemic and we had planned to have it, you know, we had planned to start it before the pandemic happen, you know that was a part of our you know our strategic plan to start that, but the pandemic happened, it was like well, this is the 30th anniversary of ADA we can't let that stop us plan to do and so me being one who's a stickler for okay this, it is what it is, it's so the show must go on. So I started gathering, you know different persons who I knew were singers that are with and without disabilities very good singer, this is not a kumbaya thing, this is it singers and the challenge came. All of the public facilities, where we could have had rehearsal all of the churches, everything was closed, so all the places that was supposed to be Community centers or Community oriented places were closed So where could we rehearse because we did not have at that time we still don't have and we're looking for we desirous of a place to rehearse and. And, and so thankfully Norma’s church her pastor allowed us to come and rehearse there in the very beginning, and then there was a Community a venue music venue that also said yes, you can come here and so as long as we were socially distance, we could, and so, starting in. We recruited June, July August and we started rehearsals in August, September. Right after Labor Day and we rehearsed until November getting into the holidays and we were able to have a kickoff concert the original plan was to have it in in 2020 but, of course, had challenges with COVID, in terms of getting a venue, where we can have it. But, we finally were able to do a kickoff concert, where we recorded live we recorded live and showed it virtually. And so we were able to show it at the bucket theater we recorded it at the bucket theater here in Atlanta, which has an accessible stage has an accessible tech area has an accessible green room, so they are accessible, all the way, which is phenomenal. Many theaters in Atlanta do not have that, I mean the larger theaters don't have that and so they were and even the seating was accessible, but we didn't we have social distance we had very limited seating with in terms of guests, but we were really excited about the inclusive chorus because it allows us to sort of get it that mainstreaming yeah you know for those persons who feel that.

Nadine Vogel: Oh, I’m so glad you use that term we use it all the time, we always say mainstreaming people with disabilities.

Norma Stanley: Yes, yes.

Myrna Clayton: So, this was our effort of curating something from a mainstreaming standpoint with and without disabilities for them coming together in a truly inclusion, you know, inclusive and that's why it's called inclusive chorus.

Nadine Vogel: Got it, got it, well that's oh my gosh that's fabulous. I know there's some other programs that you also do, I don't know if Norma, I’m just taking up all the time.

Norma Stanley: I mean, I would like her to share what she does during October, and you know what the career day and how effective that has been for especially elementary students. A little bit about that.

Myrna Clayton: Oh, absolutely October is disability employment awareness month. As you guys know. Many people don't but, as you guys know and during the month of October we go into elementary schools were with professionals with disabilities. And the entire school talk about inclusion, mainstreaming, the entire student body is having the opportunity to meet these professionals on the disability spectrum. And they and we do a sort like a round Robin where they rotate the students rotate the presenters stay in one room in the kids rotate and we talk to K through two to second grade in the morning and third from fifth grade in the afternoon, it was a full day and every student in the school is able to interact and engage with these professionals and here's the thing they can ask them anything they want to. Does that hurt, how did it happen to you, you know just any question that they want to ask, and the professionals are ready to answer and say well I’m you know I’m just like you, you know you all. Whatever and, and these are persons that across the disability spectrum, whether that's you know, autism, down syndrome wheelchair user, deaf in that was a crazy experience, because it was so funny it was like the kids were watching a tennis match. Because, you know the person deaf was signing and the interpreter the translator not interrupter the translator was behind you know sitting with the kids, so it was like watching a tennis match was so funny. And so we're you know we're learning in this process on how you know so next time you know we'll do we'll make do a different kind of a thing, because of course the translator has to see what the person is saying, but they don't necessarily have to sit with the students, and so we got to figure this out, but that's my attitude with everything, just like parents, you know, have to figure things out. When they have you know we're having to figure things out because this, this is our effort at getting at those who have been newly socialized not to point and not to stare. We want them to be able to tell their brothers and sisters their parents, oh no it's okay, we can you know that he's okay, if I asked him a question, or if I speak to him or say hi to her, you know it's okay, you know as opposed to get weirded out. And so, the kids are the kids love it we have one person that’s a wheelchair user and they brought their service dog, so the service dog was the celebrity because the kids love the dogs. She was able to teach them that you don't pet a service dog, a service dog is at work. And so, you don't pet a service dog and so those kinds of things that were able to teach the kids. And the teachers, because the teachers are clueless to you know, and it wasn't separate the kids in the special needs classes came and were a part of the entire student body as well, and so it allows the students to be able to see the students that when the special needs classes, you know see them in a different light as well, so it’s great.

Nadine Vogel: That's fabulous.

Myrna Clayton: Yeah, we even we even talked about bullying and how bullying is bad.

Nadine Vogel: And bullies grow up, unfortunately.

Norma Stanley: Yes, right. They're doing it as children they probably will do it as adults, we have to cut that out.

Nadine Vogel: Absolutely, do you know that almost 25% of the complaints need the eoc on the part of employees with disabilities is for harassment and bullying. Different than what we see in the kids in schools but bullying nonetheless right it's still an issue.

Commercial Break: Thank you for being part of history in the making. Show ability is very excited about forming the first ever inclusive chorus comprised of good singers with and without disabilities. As a 501C3 Organization, show ability seeks to be agents of change. We are leveraging art and entertainment as the vehicle that brings visibility and awareness to the capabilities within the disability community. We are doing this by breaking down barriers in three critical areas: accessibility, opportunity, and employability especially in performing arts. The significance of the disability community has been overlooked for far too long. It is our desire as show ability to the arts and entertainment industry what the Paralympics and the Special Olympics are to the sports industry. Showcasing excellent talent and ability. Remember, nothing about the disability community without the disability community.

Nadine Vogel: So, I know something else that you do and it kind of, the reason I want to bring it up, I think it relates to this whole career day and career development is, I think you have a program that focuses on artists development as well as talent booking right? I think that was like that was the bomb I just thought that was so cool so, can you tell us about that.

Myrna Clayton: Yes, you know that's sort of still in our labs because we're working and we're recruiting artists, you know on the disability spectrum. Well, just like we know it's hard to find artists that want to come into the spotlight. Well, others are having that challenge to, and especially in Georgia more and more films and movies, are being done here, and so they're looking to cast talent on the disability spectrum, and so they can't find them, and so they would reach out to us, and so I was fine like wait. Well, we can become an agency, you know, and so that so we're growing in that space to and it's been wonderful because you know they'll find out about us know reach out to us and as matter of fact, we just. They were looking for an asl after two weeks ago, and so a casting agency reached out to us and we were able to you know to submit you know, a name for them and here's the thing that we're learning and so, in terms of the artist development that's something that we want to go into once covid is kind of past us. Because, we know artists that are you know singers and dancers, but they're not necessarily actors and so we'll or people will hear about us and we have submitted that in terms of this last one, the asl she is an actor, but we've submitted for teenagers who are wheelchair users they've never acted before but they want to and we're presenting them the opportunity to even consider that as a possibility, so that has been great because what the feedback has been please tell them to be like there look we like that we'd like their tenacity, please tell them to take acting classes. It’s so great and so there's not another organization like ours in the southeast. And so that's dealing with performing arts or in, and when I say performing arts that's multi-dimensional that's anybody who's going to be on stage whether that's dancing modeling singing musicians comedians actors anybody that's on stage that's what we want to present the opportunity for. And again, many people don't want to cut people on the disability spectrum don't want to come into the spotlight because of the stigma narrative absolutely so I’m just going to say, for us, our goal is to give them to let them know this is a safe space.

Nadine Vogel: Right well and I think, Norma, you told me that the organization provides variety shows and talent shows. Really, you know, bring to what you're saying to life.

Norma Stanley: Absolutely, absolutely and what's really cool about it is you know when they do the modeling and you know model disabilities and then It just it's inclusive of all the different areas, and so you know people who are in the audience get a really good look. Of the variety of people along the disability spectrum through the programming that this particular organization and presents so it's really, really be a very exciting so we're really excited about where the organization is going, where show ability is going moving forward.

Nadine Vogel: So, let me ask you this um this something I believe that I don't know if it's new or you've been doing this a long time, but I believe you have something called a virtual arts masterclass.

Myrna Clayton: Yes. Well, it's funny because the whole virtual thing really started last year during you know, trying to figure out an annual kudos to Fulton County arts and culture, as well as Community foundation greater Atlanta because they gave us Fulton county encouraged us to do a virtual arts initiative, because obviously people weren't coming out and going to the theaters and venues. And so, with the success of that, now we decided okay we're going to do something monthly to reach our target audience and offer them tools and techniques training to assist them, and so, in February, our board chair is an amazing Radio announcer and public speaker and so she did was she works with a lot of musicians and artists and so she did a master class on how independent artists can market themselves during a pandemic. Last month March we had asl improv class where the leader is deaf and so we had interpreters there, and so it was a great improv pledge which you taught Improve. And then this month we were talking about the art of business we're collaborating with an organization called synergies work that works with the disability community and starting businesses. And so, for she's going to do a master class on what it takes to start a business. For the disability community and so we're doing things once a month, what is the last Sunday of every month at four o'clock and so we're really doing those types of things in this virtual space, just to you know reach our audience and give them something they may not necessarily have the opportunity, you know to be exposed to.

Nadine Vogel: And it sounds like this is something that can go way beyond covid, right, even when everybody comes back together.

Norma Stanley: Absolutely.

Myrna Clayton: And it's great because one of the things that this virtual thing is teaching us is we're not limited in our geography right, you know we've actually had persons participate from California we've had persons participate from other cities and so it's been wonderful as matter of fact, talk about virtual I did a last year I did a I have a relationship, when I perform I’m always trying to do something and connect with the disability community, and so I have a relationship with a disability group in Russia and so they reached out to me and said Hey, would you do a jazz masterclass. So, I was like Okay, you know, so it was crazy, because of course I’m talking and then there's a translator speaking in Russian you know because I don't speak Russian. And so, this virtual thing allows us to reach people that we wouldn't normally reach so it's this virtual we definitely you're absolutely right we're definitely planning to keep this as a part of our program offering.

Nadine Vogel: What kind of, I mean, I can only imagine the impact you're having right on not just people with disabilities and their lives and certainly you clearly illustrate that disabled lives do matter right but also the impact you're having on non-disabled individuals right. Awareness and oh my gosh I mean I don't know if you track numbers, but you have to be in I don't know hundreds of thousands of people.

Myrna Clayton: You know, we're trying to get there, you know it's funny because, as an organization, you know we're passionate and we're about programming. This year is the year that we're going to get into the more structure organization stuff. Because I’m an artist and so I’m looking production performance very you know reach the audience make the audience, you know happy do that and so we're now into just got an update you know one with our brand name change, you know that was the catalyst for us shifting and going to the next level and so we're definitely looking to increase our awareness in the general population, but you know Nadine, 20%, you already know 20% of US population are persons on the disabilities spectrum so at the end of the day, honestly, I could care less about the general population 20% is not even a niche.

Nadine Vogel: I’m glad you said that I wrote an article that said when a niche is not a niche.

Myrna Clayton: Exactly you get me and so I’m I mean to me, if we add just one person meaning like yourself someone who loves the disability Community that's 40% of the population right there. And so, you know so that's the general population, as far as I’m concerned, and so, if somebody doesn't get it. So what there's enough of us that care and are advocates and supporters here, and so, but all of that, in terms of mainstreaming, you know okay there's enough here that we there's a demand for meeting the needs right now, as they are. And so I’m just such a huge proponent of give, meet the needs to accommodate where what we're trying to do it's not a money issue it's not a money issue it's a you need to accommodate us and we're doing programming and rather than just trying to, and this is just me rather than trying to fit into the general population we've got enough we've got enough demand that this is the largest minority population, the country, my goodness.

Nadine Vogel: Well, and it's one of those populations that anyone can join.

Norma Stanley: At any time.

Nadine Vogel: Before we started a few of us were having a conversation about how our age is impacting some of us dipping our toe in the disability water, so to speak, with things going on. So, I have a question I want to go back to accessibility. So, my company, one of the one of the many things that we do is, we have a team that goes on site and does physical accessibility universal design assessments. So, when we're thinking about you know front of stage right. But also, behind backstage right what are what are those things that you think are critical that we need, our listeners who may own theaters are managed theaters in an auditorium is what is it from your perspective, they really need to be thinking about.

Myrna Clayton: To make a humanist. Because many of the stages are accessible in the back, because of equipment let's be clear, it is not because of performers or artists. It’s because of equipment they're lazy and they don't want to pick it up, so they want to roll it up there, and so let's be clear it's not because of the human beings it's because of equipment and so.

Nadine Vogel: Keep it real, keep It real.

Myrna Clayton: Yes, I’m sorry.

Nadine Vogel: No, that’s what it’s about, keeping it real, I love it.

Myrna Clayton: And so I say we're interested from street to seat, who has a front of house to back of house. Yes, so I mean from the person someone's dropped off at the front mobility standpoint, you know from the from the buses to parking that street to seats and because I needed I need accessible seating, I need choice seating and then front of house is of course staging where am I going to be positioned in that how did I go to the bathroom all of that, and then back of houses so back of house is not only stage but that's green room. Because I can't get to the green room and the green room may or may not be the bathroom may or may not be acceptable because it's you know it's back of house and then the tech area. The tech areas are not accessible and so those three areas back of House think about and so even more of that. The ramps are like 45-degree angles.

Nadine Vogel: Right.

Myrna Clayton: As opposed to you know, and no one would you I would do a push back with someone says, well, you can just lift them on stage. Don't pick me up on stage I empathize with alley stroker, or you know because every night when she you know the best actor and she's having to be lifted hoisted and she's you know and so she's had to get used to that, as opposed to give her a ramp you know, and so, so the back of house is very much so, if you a ramp is number one preference because other people have mobility issues it's not just wheel chair users. So ramp is number one preference If not, then those lifts, the challenge with the lifts is oh my god again it's like industrial they're so loud.

Nadine Vogel: Right, suddenly everybody is looking.

Myrna Clayton: Correct and so make it make it, it’s accommodating for the human side of things, no one wants, I mean you feel like you're in jail, you know.

Norma Stanley: and make it so it's not so abstruse it, like you say we don't want to call attention to the fact that we're just trying to get into the building without children or without you know, whoever it is that needs the lift.

Myrna Clayton: Right, right.

Nadine Vogel: You know it's funny we on three work live with the entertainment industry and springboard and we developed a production toolkit for producers and executive producers to understand all these different aspects, even from you know scouting location. Right and that's why I’m asking this question because everything has to be taken into consideration, you know I know Ali knew she had said, you know the barriers are unfortunately barriers of thought right this bias that goes into it and based on how you think okay, we don't need this, we do need this now suddenly we don't have the ramp that we need, so I just, I just love what you're doing.

Myrna Clayton: And Nadine, here’s another thing, because, when oftentimes because, because the logo of the moniker for disability is related to wheelchair mobility issues, that's all people think about because back of house is mobile. No, there’s the blind community there's the deaf community and so not only just from a mobility standpoint accessibility is accessibility period across the disability spectrum and so. There needs to be some accommodations for people back of house okay if someone's death they can't hear when they come on stage. And so, so captioning you know things that are back of house, and so you know I have become more of a consultant kind of a thing, because it, you know because I am one, I’m a performer, and so I know the accommodations that I expect you know as a performer. You know, and so that gives me a sort of a different angle and a different look for me to be able to come on stage and be able to see okay, and the tech areas. And so that back of house, but I, but just it's just not back of house, the problem with back of house is it's not a part of the Ada building code because Ada is building codes, it is not human centered and so that's why I’m saying it has to be human center not equipment and that's what they're thinking about always huge that they're thinking about equipment.

Nadine Vogel: Well, you know it’s like websites right, you know you look at accessible website just because something is accessible does not mean it's usable. It’s a huge difference. Well, this has been fabulous, and we are unfortunately running out of time, so let me, let me if I may and then Norma, I’ll ask you to ask one last question as well, my last question is, you know if there's if there's one or two things that if there's someone listening from the entertainment performing arts industry, what is it you want them to know above all.

Myrna Clayton: Above all, we need to go beyond Ada. It's been 30 years. We need to go beyond building code requirements and to make it human centered. Think about if you were in that situation being empathetic walk in our shoes, you know walk into certain circumstance, if even if you're a temporarily, you know disabled meaning you broke your leg. Sure, you cannot get places. You know, and so just think about it that's your regular life everyday experience and so beyond let's go beyond Ada it's time to go beyond it's been 30 years and zero has been done, I shouldn't say zero very little miniscule has been done in 30 years, and so, so that would be for me and then think about show ability and yes it's all about visit we want people to we'd love to be able to partner and collaborate, especially with celebrities.

Nadine Vogel: So, can you share your website, or how people can get in touch, please.

Myrna Clayton: Absolutely it's simply it's show ability.org.

Nadine Vogel: Oh, that is easy okay. Okay.

Nadine Vogel: Well Norma, what do you have one last.

Norma Stanley: Well, I just was very thankful that you know, Marina was available, and I know that you know as she travels internationally, she does a lot with a disability community in those travels I just want to share just a short brief, you know moments in one of those situations when she was traveling as a US cultural ambassador, and what she did in some of those countries.

Myrna Clayton: Actually, we were right before the pandemic in Guatemala, and it just so happens that we were doing a master class and one of the young boys in the in the school had cerebral palsy. And, and whenever he sings, he would sit down and he has a beautiful voice, and so I am oftentimes I will invite persons if I think they're really talented to perform with me on stage during the concerts I mean it's my show, so I can invite you about I want to my microphone I can fight whomever. And so, giving them a platform that they've never had before, and so in this case I invited him to come and perform, and I said it's only one caveat, I don't want you sitting down. I need you to own your challenge because what's going to resonate with people is your voice, and so I need for you to know to stand as best you can and sing and be proud of, who you are and so that was something that was very important for me to instill in him, you know you know don't sit down don't, don’t do that. You're performing you're a singer your stage presence matters you know, and so that was just one I mean I could tell you stories after story, but, but that was the most recent one, it was it was very big you know I think I think that I made an impact on him.

Nadine Vogel: Well, you know it's interesting that you say that you think you made an impact on him, but it takes me back to how we started, which is that a 10-year-old boy in church made such an impact on your life and the lives of thousands of people with disabilities and their families and that's what's so amazing. And so, I just I just want to thank you so much for joining us, and thank you for all that you do, and I want to thank everyone for listening I’m sure you all enjoyed this session, as much as Norma and I did, and having it hosting it. This is Nadine Vogel, your co-host of disabled lives matter, and I think Myrna really proved disable lives do matter. And, Norma my co-host darling.

Norma Stanley: You guys have a great one it's been a great show and we'll talk to you guys soon.

Nadine Vogel: Ok, bye-bye everybody.

Myrna Clayton: Thank you God bless you all.

Norma Stanley: You too.

Nadine Vogel: You too.

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates. The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advise and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast. The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or Listen Device.

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Disabled Lives Matter

Season 1, Episode 8

Co-Hosts: Nadine Vogel & Norma Stanley

Guest: Douglas Vogel

Intro: [Music playing in background] Disabled Lives Matter… here we go!

Voiceover: Hello and welcome to this week’s episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley... yay!

Nadine Vogel: Hello, hello, this is Nadine Vogel your co-host of disabled lives matter, I’m with my co-host Norma.

Norma Stanley: Hi everyone.

Nadine Vogel: Norma and I started this podcast because well it's not just a podcast it's a movement we want people to really understand why disabled lives matter what you can contribute to show that you believe it and that you help you help people with disabilities be successful and show the rest of the world that their lives do matter and the way to help is not a cause to support or to just provide assistance but it's really to recognize that people with disabilities are people first and have skills and talents like anyone else. There are times, however, that we do need to provide additional support and especially when we're talking about children with disabilities, so I am very proud to welcome today to our podcast Doug Vogel. We've asked him to join us today because he has spent almost the last 30 working with families who have children with disabilities on planning for the future and ensuring that our kids not just have lifetime care, but quality of life so Doug welcome to the podcast.

Doug Vogel: Thank you it's nice to be here.

Nadine Vogel: So, talk to us a little bit about when we hear the term special needs estate planning, what does it even mean what are we talking about. Well, special needs estate planning is basically just getting your affairs in order so that when you die, and we all will die and statistically you can't beat that the probability of death is 100%. That you, you know can put a plan together to guarantee a couple of things like maybe if you have kids where they're going to go who's going to take care of them where the money is going to go where the money is going to come from who's going to be in control of that money. One of the things that we have to do as parents of children with disabilities or dependence with disabilities is make sure that we have the proper legal planning in place to protect eligibility for certain critical government benefits that might not be available for them, while they're minors, but when they become adults if they're not able to be independent and work then, these benefits are going to be critical as a safety net for them to provide support so generally estate planning twofold there's the legal stuff and the financial stuff and they kind of work hand in hand. And that’s estate planning in general and it's very unique when you have someone with a disability and your family.

Nadine Vogel: Why, what makes it unique what makes it different?

Doug Vogel: What makes it different is protecting eligibility for government benefits so basically, there are certain benefits that an individual with disabilities, a child or an adult at that point when they turn 18 potentially could be eligible. The first one is called SSI which stands for supplemental security income, which is basically a monthly subsistence that the government will pay a family of a minor child if they qualify to kind of offset the cost of basic needs. And it's means tested, meaning that you can't parents at that point if they have a minor child, they can’t have income and assets that are going to jeopardize this threshold and the asset test is basically $2,000 so if there's $2,000 in in the child's name and the parents make you know, roughly 30 something thousand dollars a year they're not going to qualify but when the child becomes an adult then they qualify on their own. And they don't care about the parents anymore, so if you do basic planning, where you have a typical will more than likely you're leaving assets to the minor child not directly if it's a well done correctly it's in a little discretionary juvenile trust, but that's not considered viable under the eyes of Medicaid and social security so it's going to jeopardize those benefits.

Nadine Vogel: So, let me ask you a question, so, even if the child is living at home right, they're 22 years old, they function as a 10-year-old. Their living at home, so what I hear you saying is that that $2,000 limit the government's not going to look at the parents’ income and assets anymore it's really just what's in that child's need.

Doug Vogel: Right when they turn 18. Right oh so that's why it's critical to plan a lot of families, you know they think well I make too much money now my I don't qualify these for these benefits. But eventually the child is going to become an adult, even though they might not have the capacity to function as an adult at 18. So, if they have over $2,000 in assets either inherited indirectly or directly the wrong way, that's going to be considered what the government calls dimmable and it's going to disqualify them from benefits. One of the themes that we have as parents, and I say parents, because I have an adult daughter with multiple disabilities so.

Nadine Vogel: As does Norma.

Doug Vogel: As does Norma, so we you know we live this every day and have for the last 30 years with our daughter. The difference between planning, when you have someone with a disability in your family is, we have a theme that runs through our planning that's different than the typical family and that theme is dependency, we have someone in our family that's going to be dependent on us or someone else when we're no longer here pretty much for the rest of their lives, now, depending upon what your child's abilities are and what their diagnosis is obviously is going to define that. But that's the difference between the way a typical family would plan, because you know we have to provide that support. And, and that strategy and to ensure that quality of life throughout a lifetime and that's why you have to create a legal strategy and a financial strategy that's different and unique to kind of put the best foot forward and stack the deck in your child's favorite.

Norma Stanley: Wow. I am so glad you're having this conversation this is like one of my favorite conversations, because you know it bothers me that so many families don't think of this and I’m you know it's something that stays on my mind, all the time, because you know my husband died young and you know, life is not guaranteed, you don't know from tomorrow what's going to happen and that's something that this particular situation. I just don't understand why families are so hesitant, because it seems sometimes a little hesitant to put this thing in place for their child, why do you think that is.

Doug Vogel: Well, you know I’ve been doing this for a long time as Nadine alluded to, when we first started and I've kind of asked my families for some feedback and there's a lot of common themes that I’ve heard from them that I could relate to because obviously you know we're parents have dependents with disabilities as well, the first reason people tell me they don't they don't address this stuff is they don't have time. And I can relate to that you know I mean when our daughter was young, she had 11 hours a week of therapy she hadn't nursing she was on machines, you know we still had to work. You know I think in the back of the mind most parents know that this is important but they're exhausted, at the end of the day. And they say you know what I’m just going to get to it tomorrow, and tomorrow turns into the next day, and the next day turns into next week and then next month, and then years go by and parents still don't do this stuff. Another reason why I hear parents don't do this, is they say, you know I just don't know who to choose, if something were to happen to me or my husband or both of us in a car accident who's going to fill our shoes, you know, should it be your sister-in-law, should it be you know another family member. You know, so people vacillate back and forth, and they kick the can down the road, and they don't make any decisions, but what I always tell people is their worst decision is better than the decision that's going to be handed down by the probate court in the state that they live in if they don't have a will, and they don't have any type of strategy. You know it's going to be hard enough dealing with everything, and if you know you're leaving it up to the State to kind of figure out how this stuff is all going to play out and then the bus has already left the station, because now assets are going to be left to your child and you don't want to leave assets to your child, so they have to be depleted to under $2,000 to qualify them for government benefits which in actuality is basic needs.

Norma Stanley: Right.

Doug Vogel: You know it's important it's a nominal existence really and who knows what government benefits are but it's important to protect because one of the things that we're protecting is the Medicaid piece, which is huge for someone who has a disability, you know I often I often ask people when I speak, and I do a lot of workshops and I speak at schools and organizations and conferences, you know I asked them what they think Medicaid is in their own words. And the first answer people always give me as well Medicaid is for you know older people, you know I remember my mother, you know talking about my grandfather trying to get him qualified for. You know, maybe a nursing home and moving his assets, because he couldn't you know have assets and so on, and you're right but that's a very, very small slice of the Medicaid pie another. Another answer people give me as Medicaid is for, you know, lower income families. Who don't have a job, where they have health insurance and you're right, that is a small slice of the Medicaid pie, but the biggest piece of the Medicaid pie is providing services and health care and support for people with disabilities so that's why it's so critical to protect the Medicaid benefit because, if someone is not able to be independent enough to support themselves in work, they are not going to have the health care to support them and to maintain that quality of life and people don't realize this, but they can only hold their children typically on their health insurance until they're 26. And then what are they going to do.

Nadine Vogel: I think you make an important point, though, when you said about the timing right because Norma, you shared with us you know that your husband did pass early and you actually didn't do the planning until after he passed so imagine if God forbid, both of you had passed, together, you would have been one of those statistics who hadn't done that, so I think you know from my perspective, you know what an especially its parent knows, above all else is the what if scenario. Right, what if, and then what's going to happen if.

Norma Stanley: that's right.

Nadine Vogel: So, you know I think Doug that you've painted this picture of you know what is a framework that we need to understand right. From a legal perspective, but I think that the other piece I’d really like to focus on after commercial break is this issue of the financial. Right, we hear from families, I don't have a money tree in the backyard, so you said, like Doug you know family say I don't know who to leave my child to who can handle it. Another thing that I know we all have heard is well I don't have the money to fund this special need trust right I don't know where the money is going to come from, and I think that that is so important because what I have found in talking with families is even when they figure out the special needs trust of the will or any of that. They can't get their head around the financial and what I’d like you to share when we come back from commercial is in some respects, if you focus on it that's one of the easier things you can actually do. Right, I’ve heard you say you can create a state where none existed before or hey so um let's go to commercial break after just a minute, and as soon as we come back Doug, I’d like you to talk about the funding part of this.

Commercial break: And now time for a commercial break. Did you know, "Success Is Simple?" When traveling the road to disability inclusion, a company’s success is determined by its commitment, competence, creativity, and often its consultant. Springboard Consulting, a recognized expert on all thing’s disability, is a one-stop shop from assessments and training to marketing, events, and more. Whether delivered in-person or via live-stream, we have what you need to achieve success. Contact us and put your journey to disability inclusion in high gear. consultspringboard.com. And now back to our show.

Nadine Vogel: Hello, this is Nadine Vogel co-hosting with Norma Stanley on today's episode of disabled lives matter. And today Norman I are interviewing Doug Vogel talking about special needs estate planning. Doug before the break we I mentioned something about special needs trust and that's because I'm familiar with it so I’m wondering if you can just take a minute and talk about that and then maybe pivot to the funding and how this all come together.

Doug Vogel: Absolutely, absolutely so really the solution that we have as a planning strategy is to create a special needs trust or the legal East term is it's called a supplemental benefits trust.

And it's basically a trust that's created to ensure our government benefit eligibility for someone with a disability and there's no limit to the amount of money that can go in there, if you identify that your child's going to need you know several million dollars to maintain their quality of life over their life expectancy, then, then you can you know have that trust funded with those dollars. It has to be drafted by someone who knows what they're doing so, one of the things that I want to talk about are the pitfalls of planning that I see all the time when people come and see me and they bring in their stuff for me to review when we're going through the planning process where they've gone to an attorney that might be very proficient and maybe general planning and estate planning and tax planning, but they don't know anything about special needs planning. So, there's a subspecialty of attorneys that specialize in doing this, a lot of them are elder law attorneys but they don't have to be, but the majority of them are. So you want to make sure that it's grafted in the correct way to make sure that it's viable under the eyes of Medicaid and social security so basically a trust is a cup that receives what can receive assets, a house, but really to be worthwhile and the life of someone with a disability to provide that support and those resources it receives money. It either gets it now, or it gets it at some point in the future right for most of its it's at some point in the future when it's needed the most. And what is needed, the most when we're no longer there, because as long as we're here and we're healthy and we're viable and we're taking care of our loved one. You know they're going to be provided for it's in the event that we're not here, or we become incapacitated or disable that we need to have a strategy. So that's what a special needs trust it so if you had two children, you would make sure that that one child that has special needs, you would direct any assets that you're leaving to them to that trust.

Nadine Vogel: So when we you know I think it's important that in you know Norma you brought something up earlier about you know you had a trust and if you've learned recently and might not have been drafted appropriately and Doug you know I think it's important that you know you're not an attorney you're giving you know you're giving guidance, so that when people go see the Attorney they become familiar with what to ask, right, what to ask for, because I think one of the one of the things that I think scare, a lot of families. And Norma you can speak to this personally is you go to an attorney you have these trust on and then you find out leader if they weren't done appropriately because maybe the Attorney wasn't his or her expertise wasn't special needs planning right.

Norma Stanley: Exactly. That’s exactly what happened to me there was an attorney, and it was not done properly, and I didn't find out about that, until much later that was not happy so yeah, please talk about that so many people can avoid that the bottle.

Nadine Vogel: Right right the pitfalls right, you know, not knowing who to go to aware so Doug I know I keep we keep jumping around different topics, but can you talk a bit let's talk a little bit about funding. And so, how people make sure that the money is there for the child when it's needed and then maybe we can talk about some of these pitfalls like what Norma experienced.

Doug Vogel: Sure, sure well you know getting back to how I opened it up when you, you asked me what the definition of estate planning so there's two parts to estate planning there's the legal side in the financial side. And they actually go hand in hand, you know a lot of people think, just because they run out and they go see an attorney who specializes in doing and it's special needs planning and draft to trust that they've really done sound estate planning and it's a false sense of security because it's only half the estate plan because there needs to be a financial strategy to drive that legal platform because you know you're not just creating a plan to protect government benefits, because you know government benefits are basic needs. It's a nominal existence I don't want that, for my daughter, nor do pretty much most of the families actually every family that walks in my door. So there needs to be a financial strategy meeting their needs to be a way to fund the trust So how do we typically fund the trust if we're not Bill Gates or you know Rockefellers or we don't come from this very wealthy family where we can count on this inheritance being there because of our birthright well it comes from planning and everybody has the ability to plan I don't care, who you are I often tell people I don't care what your economic strata is I don't care, you know, everybody has the ability to plan. It's just taking a look at what you have and how to leverage it in the most cost effective way, so you know you can fund a trust with anything but one of the things that typically is the vehicle of choice because of the way it's designed and because of the guarantees that are inherent in in this way is through a life insurance strategy because life insurance creates assets were no assets exists, it does it income tax free and probate free and, more importantly, it guarantees as long as the policies enforce that the right amount of money is going to be there at the right time. And what is the right time, when you're no longer there so that's why special needs trust are partially funded with life insurance nine times out of 10. And it's not term insurance because term insurance is temporary, term insurance has had has a fit in planning to replace lost income during income earning years and you know, for spouses, while you have mortgages and things like that, but it can't be there to indemnify a trust over a lifetime. That's where permanent life insurance comes in, because permanent life insurance guarantees that that money is going to be there when you pass away whether it's prematurely or it's over a lifetime and there are certain types of life insurance that that a permanent life insurance that that tend to fit nicely one, for example, is called the second to die or survivorship policy. Where it ensures two people typically the husband and wife and it pays out when the second person dies not only conceptually does it work nicely right because that's when the monies really needed the most, it's very cost effective for most families, because they take a blend of the two of them. So, the insurance company can discount the premium generally by about 50% so for families, like us, who have this ongoing theme of dependency. You know, we can get a lot more for a lot less to do what it's intended to do, which is to create this estate, most of us are creating an estate right because we have to plan 30 and 40 years typically beyond our death for our children.

Norma Stanley: Wow.

Nadine Vogel: That’s important, Norma?

Norma Stanley: Yeah, this is wonderful news um you know so what does, a single parent, like me, my husband has already passed on.

Doug Vogel: Yes.

Norma Stanley: You know what do you do in a situation like that? You know, I’m in my early 60s already and I want to make sure that Sierra has whatever she needs.

Nadine Vogel: You look marvelous darling.

Doug Vogel: Sure, yeah, I mean you know, certainly a survivorship can fit nicely, and it can work in if there's a couple um you know to kind of create that bigger bang for the buck, but in your situation, and in some other situations, depending upon what the dynamics are it might make sense to do a single life policy like you don't have your husband, so you can do a permanent life insurance policy on your own life, so that when you pass away it's going to guarantee that this estates going to be there to spill over into the trust, so what it does, is it mitigates the risk Norma. So that you know if you live too long, or you get sick and you have to spend down your assets right that, no matter what else happens there's a constant funding mechanism that when you are not there, no matter what your estate looks like. This is going to immediately spill over into the trust, so you know what that number is that something that you know takes planning and refining and you know you have to look at all the other, you know the other variables and stuff and have the ability to plan.

Nadine Vogel: I have a question really on Norma’s behalf. So, I heard that if Norma had like a brother, a sister, a sibling someone else that was helping her care for Sierra, that they could actually get that kind of policy where it could be her and her brother that got insured, because after she was gone like say he would be taking care of Sierra.

Doug Vogel: You know what that’s, actually I’m glad you brought that up because that's something to consider. And again, that's where we would sit down and kind of explore a little bit more of your dynamic and who's involved in stuff but yeah, I’ve done that, before where there's been siblings that the husband's passed away and, ultimately, you know, there might be a sibling that we can use as a surrogate. It doesn't have to be the parents Norma it can be brother and sister; it could be significant other and significant other you don't even have to be the same sex. You know so as long as there's an insurable interest and it makes sense in the overall strategy that might be a way to do that as well, so yeah thanks. That was great input there.

Norma Stanley: That was great input there.

Nadine Vogel: And we only have unfortunately a few minutes left and something that is near and dear to my heard, for when it comes to this topic that Doug I would love, if you can address is this concept called a letter of intent or we call it a book of intent.

Doug Vogel: Right.

Nadine Vogel: You know it's not a legal document it's not a financial product but it's to me it's so important.

Doug Vogel: Yes.

Nadine Vogel: So, could you talk about that for a couple minutes.

Doug Vogel: Sure, sure absolutely yeah, I mean basically what we're doing here is life care planning, you know that's another definition of kind of you know what we're addressing here and part of that is you know the day-to-day things the continuity, so that when you pass away whoever is going to be stepping into your shoes as information so that they can pick up the ball and provide that ongoing immediate care. So a letter of intent is basically a letter of instruction and Nadines right, it is very, very important in the overall plan, just as important as the special needs trust for a different reason because this gives your plan information to those future caregivers it's something that you put together and basically it's broken down into two areas, the first part is kind of like the factual stuff. And the second part is the intense stuff so typically when I help families put this together, I have them create a narrative to kind of open it up and do sort of an overview of you know their child's history when they were diagnosed was it at birth, for example, if they had down since have down syndrome, or was it diagnosed at a certain age, maybe autism is diagnosed typically when they're younger or was it the result of an accident or injury. And then we kind of do a chronological overview of you know what's gone on in their life milestones met not met. You know, education, different things, and then you close it up in the present tense and you describe today as you're drafting this. You know what your child can do independently somewhat independently, maybe assisted for a child their age or an adult their age right, because if you haven't done this and now, you're starting to do planning and your child's 30. Right, you're doing it at that age and then it's broken down into factual stuff right life goes on stuff if you're not here anymore somebody needs to know who your daughter's doctors are. Name, address phone number email, you know if she's still in school where does she go to school, and she industry because she out of district, the special services contact, how does she communicate is she verbal nonverbal does she have nursing. You know, does she take medications you know Community all those things.

Norma Stanley: I have a notebook, that’s it. But yeah, it's important. Burial, you know I mean I don't want anybody to have to worry, I mean I have insurance, but you know just the details of it. You know what I want, if God forbid anything happens to me and Sierra right all that is covered already so that you know that you just had open up the notebook.

Doug Vogel: And that's the other part of the letter of intent is you get to talk about your vision for the future right what it is that you want, but we always in the back of our mind wanted her to be as independent as possible and that's what we've strived to do all these years and, as you know, she is independent, she lives alone in an apartment and with a service dog, but had we passed away years ago you know, we wanted the people who were going to be stepping into our shoes to know that that was important to us. So, you got to write you can talk about your values, religion, you can talk about quality of Life living arrangements so that's what a letter of intent allows you to refine a willing to trust are important for all the reasons we talked about but, but if it doesn't provide that information to provide that level of care and support and advocacy.

Nadine Vogel: So, the last thing I wanted to touch on I’m going to come back to you Norma is you know the poor planning. Poor planning comes in a lot of different ways, right here, we don't plan right or your experience of maybe not having the right experts so right, I mean that had to be for you normally that would be.

Norma Stanley: Right because I thought I had taken care of it and I happen to be going through, with another financial person and they were like well that's not that's not that's it but that's what I paid them to do right. They weren’t lawyers, they didn't have that same kind of information they didn't understand, so I didn't know that at the time, but now I know it's like oh I’ll share that with everybody like you're saying you know, make sure you have the right people looking at your documents.

Nadine Vogel: Absolutely, it’s the right financial people the right legal people whatever, so I am like I just can’t believe we are out of time.

Norma Stanley: I know it's great information I could go on forever with this.

Nadine Vogel: I know this session has flown by. But, Doug, I want to thank you for joining us today because, again, what is this show this show is that disabled lives matter whether we're talking about a newborn baby we're talking about a young child and adult. But in this particular case we're talking about the parents from day one, acknowledging and taking action to show that we want to have quality of life for our children, because disabled lives matter. So, Doug I want to thank you Norma as always great show I love doing these with you.

Norma Stanley: Me to, I have a great time.

Doug Vogel: You’re welcome.

Nadine Vogel: For our listeners We look forward to seeing y'all and talking to all of you next week bye-bye everybody.

Norma Stanley: Talk to you soon, bye-bye!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates. The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advise and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast. The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or Listen Device.

View Details

Disabled Lives Matter

Season 1, Episode 7

Co-Hosts: Nadine Vogel & Norma Stanley

Intro: [Music playing in background] Disabled Lives Matter… here we go!

Voiceover: Hello and welcome to this week’s episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley... yay!

Nadine Vogel: Hello everyone and welcome to this evening’s episode of disabled lives matter I’m Nadine Vogel your co-host along with.

Norma Stanley: Norma Stanley.

Nadine Vogel: My co-host, and this is going to be a really interesting session this evening, the reason for that is that, unlike what we've done in in most of our other episodes we're not going to have a guest, we are each other's guest. Norma and I you know we realize we're special needs moms we have a lot to say, and you know, depending on the feedback we get from all of you, we may find that we do more of these sessions. Norma, you and I are always getting you know, individually questions about all different things related to being a special needs mom, especially because our girls are 29 and 30 or 31.

Norma Stanley: Yes.

Nadine Vogel: You know, I hate to actually say that because it gives folks some idea of how old we are. But you know it gives us experience it gives us perspective.

Norma Stanley: Absolutely.

Nadine Vogel: And I think that's something that the younger moms and dads in particular could use to hear you know it's interesting I just got off a call with a group of individuals of four people, all of them are healthcare professionals, all have disabilities. So, there’s a med school student a doctor a nurse and a dean of admissions. And then actually a chief diversity officer of a system and just to you know have these conversations as much as I think their perspective is fascinating, and they thought mine was fascinating as someone who is you know has experienced so many hospitals and health visits with my daughter, as I know you have so let's just let's just shoot the shit you know. What do you think we should start with tonight.

NORMA STANLEY: Well, I think, to me, I know I don't believe in things as coincidences and I’ve been a fan of yours for many years and you didn’t know, but I was stalking you. Because you know you were doing all the things I wanted to do in terms of you know, the disability Marketing and with companies, and you know I understood you were a mom with special needs child also and I said now, this is somebody I would love to meet and learn from, and you know, I was going through my own period of not knowing what was going on left from right whatever. And then I just be grouped in and started coming back into my business, and you know you reached out to me, after my CD and I said wow and you said we have a lot in common, and I said, we really do I always wanted to work with you. And then the doors just opened, I said thanks lord.

Nadine Vogel: See, you ask and you shall receive.

NORMA STANLEY: And be patient, that was like sixteen years ago.

Nadine Vogel: Timing is everything Norma.

NORMA STANLEY: Everything, everything, but I’m excited because, yes, you know as a mom my daughter's 32 and yeah, I have no problem saying how old, I look pretty good for my age.

Nadine Vogel: You look damn good.

NORMA STANLEY: Thank you, thank you, but you know I’m thankful that I’ve learned so much and one of the reasons why you know what we're doing, I think, is kind of important because typically, younger parents who may be going through those challenges and not know that there is you know light at the end of the tunnel. And they can come through this better than they are, they may think they are right now um it does get better with time and you know our children my daughter was born with cerebral palsy and although. You know she doesn't talk like a typical 32-year-old and she had the same comprehension as a typical 82-year-old she is still living a full life she enjoys modeling she's a model she’s a fashion model in her wheel chair and you know she's having the best time and I’m happy that that's what I wanted her and I’m still her caregiver she's not independent, but the process was what I learned what I needed to do for her I can help younger families to maneuver that their own journey yeah.

Nadine Vogel: And it is a journey gosh it is a journey. So, I’m curious Norma, when Sierra was born, when Gretchen was born I got handed a poem welcome to Holland, did you get handed that.

NORMA STANLEY: I did not.

Nadine Vogel: Ah, ok so. Welcome, for those who don't know who are listening to this welcome to Holland well you know I’m just going to do it this way, you know as you're listening close your eyes and imagine for a second that you’re taking your very first trip to Italy, you learn the customs you get the guidebooks you know we're not in a pandemic, obviously. You learn the language you buy new clothes you plan for a year, maybe even longer yeah day comes right, and you get all excited you go to the airport to get on the flight it's a great flight, and then you land. And when you land the pilot comes on and says, ladies and gentlemen, welcome to Holland you think what I was going to Italy, I obviously got on the wrong flight. Just I’ll stay on just take me back and what you learn and what you're told is I’m sorry, Mrs. vocal you know you'll never be able to go to Italy, you will have to stay in Holland. And you know you grieve you see people going back and forth to Italy the flashy clothes and you're grieving for the fact that you can't be in Italy, but what you learn through this journey that you just described is that Holland is a beautiful place. Right, it has windmills, it has tulips and, yes, you wish, you could have gone to Italy, but you learn to appreciate Holland, for what it does, for what it gives. For me that that poem was written about 40 years ago by Emily Pearl Kinsley she was a writer on sesame street at the time when her son was born with disabilities and I gotta tell you a copy of that poem is in my purse.

NORMA STANLEY: Oh, can you please send it to me, I’ve never heard it.

Nadine Vogel: Yes, absolutely you know my daughter is going to be 30 and I’ve never left home without that poem and I share it with everyone because to me that’s the perspective.

NORMA STANLEY: It so is, it really, really is, and you don't know when you're in that moment when you're young and the babies are young that you'll ever be able to come to it, you know you do and in many cases, you come to a beautifully and that's why my daughter, I know for a fact I wouldn't be doing half of what I’m doing now, I was not that motivated I was you know, I was pretty motivated but not here. I mean I’m doing a lot of things I’ve always wanted to do because I realized she can have the best possible, if I don’t. And I’m a single mother because my husband passed away, her dad, 12 years ago I’m really going for all those dreams that I never really thought I'd be able to do back in the day, because I didn't think I just didn't think about it, it was all a Sierra but now it's like it's about both of us it's about us both maximizing whatever potential there is and living the best life we could possibly live to having a quality of life and helping as many other people do the same thing as possible, who will have children who have families like ours.

Nadine Vogel: yeah, you know it's true. I remember, we had some well I’ll say ex friends that after Gretchen was born, you know they were like oh, you know you and Doug you were the perfect couple I heard about your daughter I’m like so what does that mean are we less than perfect I was, I was so confused and upset by that to be perfectly honest and when you have a child born with disabilities you learn who your real friends are. Because many just run. They run for the hills, you know, we had one woman who was afraid you know when she was pregnant, that she could catch whatever Gretchen had I it was just it was ridiculous. And you know I remember that you know they didn't think, Gretchen spent three months in a neonatal intensive care unit, she was born full term, but nobody knew she’d be born with disabilities and she came home with round the clock nursing had nursing at home till she was 13 through a gastrostomy tube till she was 13. Didn't walk or talk till she was about six and that was initially with a walker she entered middle school at a second-grade reading level, but you know fast forward she's a four year college graduate. She lives independently she drives she walks she talks; she will have lifelong disabilities. Lifelong issues, but again it's perspective, and I think you said so beautifully before it's about that our children, no differently than any other parent right we want the best for our kids to have the best possible independence or quality of life that's possible for them and that's going to be different for everyone.

NORMA STANLEY: Everybody.

Nadine Vogel: Whether they have a disability or not, how many kids do you know or how many people do you know who have adult children who the kids have had no disabilities and then suddenly have a mental health crisis and die by suicide, everybody has something.

NORMA STANLEY: Everybody and it's so important to people to realize that African American Community or the alias or all these other communities it's not a monolith. Every family every group individually, you find your own way. But by having people who understand the process and the journey it helps make the journey itself a little easier. And that's one of the things that I’m so thankful that you're part of this year, my exceptional parents celebration that you know to speak on that foot, especially for the younger families most challenging I know that mother's day when my daughter was going up was a very sensitive time for me, and I never shared that with anybody that I was going through it but she didn't know it was mother's day.

00:14:03.090 --> 00:14:11.310

NORMA STANLEY: and my whole life revolved around her and she couldn't tell me how she felt about me being her mom it bothered me when I when she was a young girl.

00:14:11.760 --> 00:14:18.750

NORMA STANLEY: And, and you know I mean, every now and then I still get choked up about it but our goal was to help other mothers going through the same thing. to feel uplifted and encouraged that they can do this we're in this together and it's going to be okay, and so now is no bad so good, because you know, sometimes that gets Mattel some of these things and mission to make the. Parents we’re reaching out to now and we're hoping that you know it encourages lots and lots of people lots and lots of families.

Nadine Vogel: You know, absolutely and you know the other thing is that most people don't realize that there's a divorce rate upwards of 80% in this special needs parent population there's a lot of shame and blame and guilt and all kinds of things you know, and unfortunately it just is what it is and you know I’m very happy to say, you know my husband and I have been together since we were 14 years old.

NORMA STANLEY: Ok, we have more in common. My husband, we were teenager sweethearts to. We were married 25 years before he passed away. But that’s another similarity that's interesting.

Nadine Vogel: Absolutely, and you know, my husband and I will be married oh my gosh so we got married in 85 I can't even count. 95 05 2005, 40, 40 something years. I can’t count anymore, but you know it's a long time and you know you became a single mom not because of divorce but because of the death of your spouse and that's another you know component of your life that not only you had to grieve but not understanding, perhaps how your daughter was grieving because she couldn’t communicate.

NORMA STANLEY: Well, you know I do remember very vividly when we went to the funeral and my daughter and her dad Stephen they were close they were very close and she didn't understand he was gone she kept trying to get to him. I had to pull her back. That just got to me but, but it was painful also that she didn't really understand because she didn't grieve like a typical child would grieve, I would hear her calling her daddy in her room because that's two words she knew how to say was momma and daddy and eat. First, I was like okay what's going on, because she was having a conversation with somebody in our own little way of speaking and she’s speaking to an angel in the room, with her, so I was able to feel much more comforted by that. But you know there's so much that we think that they can't do, and then you find out they can do a lot more. But at the same and there's so much that they are protected from at least I tried to protect her from it, because she doesn't know she doesn't understand so it's a purity it's a feeling of what typical children don’t. She’s just happy. And that’s a blessing.

Nadine Vogel: Right, right.

Nadine Vogel: Absolutely, absolutely you know it's when my, when my daughter turned 12. She got into this state of why me because she did know. And you know, there was unfortunately look there's always bullying, and you know school and middle school but hers was even more so, and she really started, you know dealing with why me and I bought her a book that, to be honest, she hated. It was it was written for children, but it was called it could always be worse, and it was trying to give her perspective that as much as she was going through, it could be worse, you know we'd go to an orthopedist office, and she had orthotics on her feet and her legs hurt, but I would show her a child in a wheelchair. And you know she had a G tube, and I would show her child, who was on a vent and you try to give her that perspective. But it's hard when the kids are young, because to your point you know as adults it's hard on us right and it's something that I believe that you know it's not what happens to you in life it's what it's what you do with it, that matters, and I think that that's what you and I have worked also to teach our kids. In whatever capacity, they can do something. That's what that's what makes it all okay that's what brings that quality of life.

NORMA STANLEY: Absolutely.

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Nadine Vogel: And you know I don't know if you heard about this, but I was like crazy when I heard this, there was a recent study where medical doctors were interviewed. And about treating patients with disabilities and the assumption on their part that with individuals with disabilities have a lesser quality of life. Therefore, the health care disparities, the way in which they treat the patients are different.

NORMA STANLEY: Yeah, right.

Nadine Vogel: I was just, I was appalled. But you know even goes back to things and I think you and I touched on this not too long ago we were chatting that. Is that when Gretchen would go into a hospital or in some health care system, you know the nurse and the doctor would say hi mom hi dad I’m like I’m not your mom, I’m her mom.

NORMA STANLEY: Mhm.

Nadine Vogel: Or they would talk to me, instead of her even after I said she can talk for herself she can see, so with Sierra it's different but for Gretchen the assumption, they just make this assumption that she can't do that and I’m like what is that about.

NORMA STANLEY: Exactly. Exactly it is frustrating, and you know that's something that I don't understand also is that you know in all these years there's certain things I feel should be in place. That doctor should listen to the mother and the mother says my child is not developing the way they should be, I read any books, when you're expecting all these things and I knew that she wasn’t looking in those first few months the way other children are supposed to be developing that when I was a company I was at the same time, two other mothers whose children were like a month apart from mine and they were saying all the things that their children would do and I’m like Sierra isn’t turning around and turning over, and all this for months and they say she’s going at her own pace, her own pace, it wasn’t until she was nine months old they referred me to a neurologist that said, you know, she had developmental delays and other therapies and then they said at 12 months that she had some CP but you know you would think they'd be able to see this lot younger. It shouldn’t take too long.

Nadine Vogel: Right absolutely, absolutely. Well see, Gretchen actually till this day goes undiagnosed, but they knew immediately when she came out and knew something was wrong and they called the neonatologist, but you know it's funny you bring up the book what to expect when you're expecting I lived by that book right, and then it was the one I really lived by, what to expect I think it was during the toddler years or something and I had a love hate relationship with that book. Because I would read what was typical right the different milestones. And if she wasn't achieving them, I got crazy I was calling the doctor and you know I knew in truth that she probably wasn't going to, but I would cry. So, like I would cry, and my husband would say Nadine stop reading the darn book. I was like you’re right. And don’t you know the next morning I was picking the book back up and messing with her head and you know doing all these things again. And it's tough, because you know the barriers for me the barriers in society, relative to disability are not really the, I mean yes there's this physical barrier for people who use wheelchairs and all kinds of things, but at the end of the day, from my perspective as a special needs mom the biggest barrier is barrier of thought. Right, and bias. And people don't want to believe that their bias and not everybody, you know, most people are not trying to be mean but, they just haven't had the same experiences and I don't know how to react or act but that bias then turns into that barrier of thought. And, as a result of that people say and do really inappropriate things. You know, when Gretchen first started elementary school, I remember so she wasn't she wasn't walking she had just learned how to lower herself from standing to a floor and just started walking with a walker. And we had the intake process she was going to kindergarten and they came back with a recommendation that she should go to school in a wheelchair with a helmet. And I said, but she doesn't need a wheelchair she walks with a walker and there's nothing wrong with her head, why would you have a helmet on. But what I quickly learned is because they were concerned about their own liability should she fall or something rather than let her develop this typically as she possibly can, and actually help her develop way rather than caused her to be a self-fulfilling prophecy and they say see I told you; she could never do it.

NORMA STANLEY: Right. Right.

Nadine Vogel: And that self-fulfilling prophecy piece is so upsetting to me because to me it's their way of saying you know I’m the expert, I know, and then they can say after, see, I told you.

NORMA STANLEY: Mhm. But like you say, if they would just listen to the mother. And because we know best, I mean I know we're not medical experts, but we are paying close attention to the bulk of our children, and we know when something a little off. And they just don't listen, in my opinion, the way they should listen and once they recognize our thinking all the time that there should be things in place that can help the parents, a lot more than I’m seeing even after all these years after having Sierra still so much not in place at the ground level it just boggles the mind and because I think a lot of families would have an easier time understanding and accepting and you know maneuvering the process. Everything I learned, I learned from another mother.

Nadine Vogel: Absolutely.

NORMA STANLEY: I had a handle on what was going on with my child.

Nadine Vogel: Well, look, as parents, we are as you said, we may not be medical experts, but in truth, we are the experts on our children.

NORMA STANLEY: Yes.

Nadine Vogel: We’re the ones that are with them 24/7, and you know I remember a neurologist wanted to trech my daughter Gretchen when she was a baby and I said, you know what you'll have to cut my throat to get to hers.

Norma Stanley: Okay.

Nadine Vogel: And he was like what and I said she doesn't need a trech and he's like and who's the doctor I said on her I’m the mom doctor.

Nadine Vogel: Right, and you know, at the end of the day, you know, Norma at the end of the day, it's going to be you it's going to me we're going to be standing and looking at our kids and saying, did we do everything we could to make them the most independent happy healthy kids possible. Those doctors aren't going to be standing there with us.

NORMA STANLEY: That's right.

Nadine Vogel: Right, and to your point, you know you learned everything from the other moms you know Doug and I had belonged to a support group, a Parents Support Group and that saved our lives. If not for that support group, and we're not really support group kind of people kind but oh my gosh that was, thank goodness.

NORMA STANLEY: Exactly I would not, we weren't those people either, or you know the thing is my family didn't understand because Sierra was the only person that they’d ever known that had that.

Nadine Vogel: Same here.

NORMA STANLEY: So, they didn't know how to handle so many different things and um it was challenging for them, and like you say they loved her, but they didn't know what to do, and then you know so yeah. And that's what always cracks me up because people think that I’m some superwoman it's like I’m just being a mother. This is how I know how to do it, I don't know you, it’s not that serious.

Nadine Vogel: Right. But you're right Norma, you know your just being mom right, you move forward because you know when something like this happens, you either can move forward, or you can just crash and burn. And, if you don't move forward, then what message are you sending to your child. But if you do move forward, like you've done and have so many successes, then your child sees that and can model and emulate that for themselves, I always told Gretchen you know someday we won't be here. I need you to develop a thick skin, I need you to become a self-advocate in whatever way you can and let me just tell you she's taking it to the enth degree, she could use a little less of the advocate. Because I gotta tell you Norma, she uses it with me. She uses it with me, she uses it with everyone at work, so sometimes it goes a little overboard but at the end of the day we're not going to be here for their entire lives.

So, what is it we can do to ensure that in whatever capacity, they can speak for themselves or that we put people in place who can emulate what we've set as standards and follow that after we're gone?

NORMA STANLEY: That's right and they’ll put all those things in place so that we know you know the trusts and the person who would execute trust and all the things that we know to do you know what it’s still my prayer that if one of us has to go that she goes first, although I would love to be here, but I don't want I can imagine somebody else taking care of her.

Nadine Vogel: You know I have to tell you I have had so many parents say that to me. They hope that the child goes first, and you know it hurts my heart. It really hurts my heart to hear that and it to this day. But, I understand.

NORMA STANLEY: Well, let's put this way, I know who I am with her. You see how I dress; she dressed the same way but they're very stylish. Her level of quality of life, such as not even typical cousins you know they just don't have the same kind of opportunities and I want it to stay that way and I'm not sure if it will, if I’m not here.

Nadine Vogel: No, no, I understand.

NORMA STANLEY: Even with her extended family her aunts or uncle's or you know, perhaps other I don't know so I believe me, I’m getting up in age you know I’m in the early 60s and now it's like I just pray that I’m healthy and you know stable enough to be able to do what needs to be done to take care of her as we both age.

Nadine Vogel: And that's look, that's just our reality right.

NORMA STANLEY: Exactly.

Nadine Vogel: That's our reality, and you know it was years ago Norma, there was a program and it was a high school graduation and all the all the children that were graduating all the students graduating all had disabilities fairly significant disabilities. And they had some media there, it was some really well-known school private school, and all the parents were crying. And so one or two of the parents had gotten interviewed and the reporter said. Oh, you know those must be tears of joy to see your child graduate and you know, not everybody thought they could do that, and you one of the moms I remember, she said, you know, yes, they are tears of joy, but actually their more tears of sadness. And the reporter was taken back like what, how could you say that, and the mom said, you know when they're in school they're protected. They have they have their day accounted for they have support they have therapy now what. Now what my child’s an adult they can't go into you know, a facility that's for older people, you know daycare kind of thing for elderly. They can't get a job, what on earth are they going to do, I can't if they just sit home all day and do nothing to watch TV then then that's no quality of life, oh my and everyone by one, the parents echoed that, and you know it just again is another point of reality, you can't just lump special needs parents all in one right just like you can’t lump people with disabilities all together. You and I have similar paths, but certainly because our kids as they've developed to develop differently, the paths are different. But at the end of the day the issues are so much the same they're just you know different levels of it but their so much the same. And I want to make sure that any parent, special needs parent, that's listening today that they know that they can reach out to us. That they can attend your event that's coming up its virtual because it's that important it's that important for us as moms for the dads for the kids.

Yeah, it's tough and you and I know it, it's tough.

NORMA STANLEY: It's tough but it's a beautiful journey. You know all of her accomplishments their invested in my brain. And her grandmother, her paternal grandmother still here my mom passed on, but you know it's been a beautiful journey, and I think just her being here has helped the rest of us to maximize our potential and our realization that hey you know what. Go for it, because you know, like. make it happen let's see what we can possibly do and make a difference and so I’m hoping that that's what happens with all of us.

Nadine Vogel: Well, I'm glad you said that, because for our listeners who are not special needs parents, but maybe the grandparents the aunts the uncles and friends. You know here are words think about how you can reach out and support that sister brother cousin niece or nephew or perhaps you know you're not a family member but you're a neighbor of know right get perspective or maybe you're an employer and you don't realize that almost 10% of your employee your workforce are parents like me like Norma and think about understanding some of our unique needs and how you can better support us because I gotta tell you Norma I know you're going to know this, we are the best at multitasking, at innovating and figuring out issues and know if someone says no that just makes us work that much harder.

NORMA STANLEY: Absolutely.

Nadine Vogel: And so, the audience is so big right that we all need to come together and find ways to support and especially now during covid, I mean that's just added a whole other layer. So, we've had so many special needs parents tell us you know, yes, my kid is being homeschooled like other parent’s kids, but I don't know anything about teaching special education or my child is on the spectrum and they can't sit still at the dining room table for an hour two at a time, so I can get work done. Right, or they're on a ventilator a feeding tube and there’s medical things that have to take place and I can't get someone in the home to help. I mean so again, even that has added a layer of complexity.

NORMA STANLEY: Sure, has and it's a real situation that people need to understand. You know, like you say try to provide support wherever possible, I know, when I you know Sierra was young, I lived in New York, I was here in Atlanta and you know, like you say not all the girlfriends, not everybody can handle it, and if you could just have you know, having a weekend I didn't know about respite until she 14 years old.

Nadine Vogel: Oh my gosh oh yeah oh my gosh.

NORMA STANLEY: Exactly, and so things like that you know, having a weekend debate with you can just go with your husband to de-compress a little bit those kinds of things are putting. So yes, family members friends who can take the style for a few days or a week. That’s amazing.

Nadine Vogel: Oh yes, absolutely. And again, you know sometimes they say don't sweat the small stuff. But when you have a child with a disability there's a lot of big stuff. But you still have to sweat the small stuff too because it's that important the small stuff if you don't pay attention can become big stuff. So you know, making sure that while you're taking care of your child you and your spouse take care of each other or taking care of other children, so the rest like you talked about, or you know going out to dinner once a month or whatever it may be oh my gosh Norma you know what, talking to you, I feel like I’m talking to a psychologist I mean really.

NORMA STANLEY: We’ve had a good time talking together.

Nadine Vogel: I know we're like we're like each other's little support group. But, but I, my gosh we already ran out of time which is amazing. So, what with Norma and I would like to do is here from you, our listeners. And if you would like to hear more about this really or any topic. You know, let us know we can do more sessions, we can focus on very specific topics from a mom or dad's perspective or whatever it may be so just let us know, but for today this was disabled lives matter and again remember it's more than a podcast it's a movement and I just want to thank you Norma for being my co-host, for being my friend, and we will see you next week.

NORMA STANLEY: Thank you and we'll talk soon.

Nadine Vogel: Okay bye everybody.

Norma Stanley: Bye-bye.

That was such an impactful episode, that we would like to end with a reading of the essay mentioned during the podcast.

"Welcome to Holland" is a prominent essay, written in 1987 by American author and social activist Emily Perl Kingsley, about having a child with a disability.

The piece is given by many organizations to new parents of children with special needs.

And it goes like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.

You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice.

You may learn some handy phrases in Italian.

It's all very exciting.

After months of eager anticipation, the day finally arrives.

You pack your bags and off you go. Several hours later, the plane lands.

The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy!

I'm supposed to be in Italy.

All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.

They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.

It's just a different place.

So you must go out and buy new guide books.

And you must learn a whole new language.

And you will meet a whole new group of people you would never have met.

It's just a different place.

It's slower-paced than Italy, less flashy than Italy.

But after you've been there for a while and you catch your breath, you look around...

and you begin to notice that Holland has windmills...

and Holland has tulips.

Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy.

And for the rest of your life, you will say "Yes, that's where I was supposed to go.

That's what I had planned."

But... if you spend your life mourning the fact that you didn't get to Italy,

you may never be free to enjoy the very special,

the very lovely things ...

about Holland.

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View Details

Disabled Lives Matter

Season 1, Episode 6

Co-Hosts: Nadine Vogel & Norma Stanley

Guest: Martha Anger

Intro: [Music playing in background] Disabled Lives Matter… here we go!

Voiceover: Hello and welcome to this week’s episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley... yay!

Nadine Vogel: Hello, and welcome to today's episode of disabled lives matter, this is more than just a podcast, this is a movement, and we want you all our listeners to become a part, an active part of this movement I’m Nadine Vogel your co-host along with my co-host Norma Stanley, Norma, Say hello to everybody.

Norma Stanley: Hi everyone so glad to be here today.

Nadine Vogel: Yeah, and today we're joined by Martha Anger Martha is a deaf filmmaker and actor and actually, she's a jack of all trades. I've learned that she has talents, above and beyond, that most of us only wish we had.

Nadine Vogel: She also reminds me of me and that she has lived in I don't know, six, seven different states, every time I talk to someone, and I say where I am like when did you move there. So, Martha, you and I have a lot in common there. Let's just get started right on my first question Martha is, how has being a deaf media filmmaker professional impacted both your personal and your professional life.

[Martha typing response]

Nadine Vogel: And I know that’s a big question!

Martha Anger: I grew up always want to be a filmmaker because I wanna change the world through our lens and our deaf culture way of life. Also, I grew up have grassroots, but I gained more networking through my profession as a deaf media and filmmaker plus actor. I was born with duty. What does they impacted my life is that I share my story literally impacted others change their view of deaf world by working with me on film set or any field. We built a bridge to work together, learn and grow. Change their view and attitude on deaf and people with disabilities but what’s bonus for me that I am strong person, fearless full of life, not afraid to break through so many obstacles that is what made me strong and successful because I wouldn’t let anyone tell me no to my passion and dream.

Nadine Vogel: So, Martha it sounds like you're saying you grew up always wanting to be a filmmaker because you wanted to change the world through our lens of deaf culture and your way of life, I think that's really important you also saying that you grew up with you know from a grassroots perspective gaining more networking through your profession it's a definite media filmmaker and acting. And you know I think that's so important because so many of us when we're young don't know what we want to do in life and don't know you know who we want to be, and the fact that. You know you feel strongly and felt strongly about that from the beginning is really, really important um it also you know you're saying that would impacts your life is that you share your story literally as it impacts others. And you get to change others view of the world by working with you on a film set or in any field which, which I think it's so important because. You know we all want to leave a legacy right we all want to have impact in life in some way, shape or form, and I know you talk about that you build a bridge to work together to learn to grow and that's important. You know, at my company it's springboard We talk a lot about changing people's views and their attitudes you're doing that about people who are deaf and with disabilities in general.

Norma Stanley: Yeah, and I just have to say, this is Norma, you know I love. What we're learning just by getting to know Martha and the work that she does. More about the deaf Community it because we just had an opportunity to work with her at an event where she held a master class on def improv for an organization called show ability and that was a really interesting interaction between the people listening and it was on a zoom call, and you know they did skits and everything and we did have an interpreter to help out with that, but it was a lot of fun and that was something that was new to me So how do you, you know, in terms of accessibility. What challenges have you been able to overcome and what would you like to see more of technology is helping but is that enough.

[Martha typing response]

Nadine Vogel: While we wait for Martha to answer that I think what's really so important is that she considers herself and we obviously know that she is an extremely strong person, you know she's full of life she's fearless and she's not afraid to you know go break some ceilings. You know, with all the obstacles, I always say that people with disabilities are often even more successful because of the adversity, that you go through, and that you deal with. I know this is going to sound odd, but I often will say you know I wish adversity of different types on people when they're young. Cause it will help them learn, you know for the future right know, like you, like you say Martha no one's going to you know tell you what your passion or your dream is going to be about so in terms of what normal was asking what your thoughts are.

[Martha typing response]

Norma Stanley: This is a learning experience for all of us.

Nadine Vogel: Absolutely, and you know, we should tell our listeners Norma, that you know what we're doing today is really about accessibility and inclusivity. Because I want folks to know how we're doing this is utilizing not just captioning. But chat feature so because we don't have an interpreter on screen with us, and we are still communicating effectively and communicating in a way that everyone is comfortable. From Martha to Norman to myself and all of our listeners, and so I think this is an important lesson as well um you know it's always nice when it's not even intended, but to get to teach at the same time.

Norma Stanley: Absolutely teachable moment.

[Martha typing response]

Martha Anger: I just want everyone to treat us the same how we want to be treated… we don’t need their pity because they don’t understand being deaf or person with disabilities. Accessibility is very important for everyone anyway. The main problem with accessibility is related to ADA law, ablest work in ADA law that doesn’t have any PWD or Deaf person to work in that field to help to change the whole system to 100% equally accessible for all

Nadine Vogel: So, I think Martha, you know I, I agree with you so much, I just wanted to treat everyone the same have everyone be treated without pity right, and you know just understand that, just because you're deaf or you have a disability doesn't mean that you're less than in any way. That is so important, you know what I actually was being interviewed on a podcast earlier today about leadership and people with disabilities, not focused on being hired and higher did entry level jobs right but being leaders running the companies being the executives why aren't we talking more about that. And I think Martha to your point, you know that's because we look, we have bias, whether people want to admit it or not. They have by a bias turn into right it's a pity, and to oh poor Martha you know I need to help her and what we need to realize is that it's really more a barrier of thought. Right and a barrier, the action relative to thought, because if we're accessible and we provide accessibility and whatever way, that means we immediately remove those barriers right we put ourselves on equal footing. We talk a lot at Springboard about you know equality doesn't mean that you treat you know that you have to treat everyone exactly the same. Like you know we can provide captioning we can provide chat because at the end of the day, it's about giving everyone the same ability to be successful. Absolutely, because it's you know people talk a lot about diversity Martha's you are, you know, is its inclusion right and you're the perfect example of that So let me ask you this, I know that you've been involved with sign one news I believe you're an anchor there, which is so cool So what has that experience been like for you.

Martha Anger: different.

Nadine Vogel: different, very different, okay.

[Martha typing response]

Norma Stanley: I’ve got to say that I am now encouraged to learn sign, signing.

Nadine Vogel: There you go well you know the springboard team; we always had an annual offside team meeting and at one of our meetings we had someone come in and teach us sign language. I have to be honest that I don't remember much I barely get through English. But we did we did do it, but I, you know, while we're while we're talking about this, and while we're you know just waiting for Martha to respond, you know, one of the other things that she had said earlier that I’d like to share is that. You know, in her perspective, the main problem with accessibility is related to the ADA law.

Norma Stanley: uh huh.

Nadine Vogel: That it doesn't have you know that most ableist work in ADA law but don't have disabilities or someone who’s deaf who works in that field. There's a saying you know nothing about us without us.

Norma Stanley: That's right.

Martha Anger: experienced random roles. Me as an anchor, I’m supposed to stay neutral to deliver news. Without involving my personal bias. While as an actor, I memorize the script, acting on set and become someone else. So, News media I did a lot of report, asl gloss from English translation to ASL. News is more of reality experience for me, and I met so many important people in the news world and I also met important people in film.tv industry… wonderful experience

Nadine Vogel: And I think that Martha you know that's what you're really referring to and in order to ensure that we are 100% equally accessible again we have to be inclusive right everybody has been part of the conversation. And in terms in terms of the question of you know what it's like to be an anchor on sign one news, one of the things that Martha you indicated, is that news media and film and TV are all really different. We tend to lump them all together, but that they're really, really different as an anchor different role right you're supposed to stay neutral to deliver the news, just like we are you know here although I think opinions are expressed. But as a news anchor you know Martha you've been clear you have to not have personal bias. But when you're an actor memorize a script acting on screen and portraying someone else, so a news media, you know you do a lot of reporting. You have asl you know translation. But that news is more of a reality experience for you. And that so many really important, you know cool people that you get to interview, I mean it's like us right Norma you and I are interviewing Martha. Pretty interesting that you get to have these experiences because you're not my understanding is that you're actually not only an anchor you get to edit the shows and feature stories, which is totally cool and then I was really on your skill sets are amazing to me because I think you said you also shoot camera like a multimedia journalist ah, how do you do all that, I’m exhausted just hearing about all this.

[Martha typing response]

Martha Anger: I am not only anchor; I edit the show and feature stories for S1N Also I shoot camera like a multimedia journalist. most are reality job Acting and filmmaking is like my personal, my life story I wanna share to the world. I have ADHD so these jobs are perfect for me

Nadine Vogel: But I know it's important that you share your story with the world, and I, and I agree, I think that that's really important and Norma you and I have talked about this, you know sharing stories whether it's our personal it's our kids.

Nadine Vogel: Oh, Martha says she has ADHD, so all these jobs are perfect for her. I get it, I get it.

Norma Stanley: If I didn't know better, I would think you were like me, because you know we all have like 10 jobs and that's just the real deal we just, it's how we do our thing.

Nadine Vogel: Absolutely and it's so funny that you were just you know, making this motion of chop chop chop chop chop and at our office they tease me all the time and they do that cause I go from one thing to the next to the next.

Norma Stanley: multitasking that's what we do.

Nadine Vogel: Absolutely. But Martha what do you think if you think about the deaf community and you think about accessibility. What issues, do you still encounter I would say, on a regular basis, you know generally and then or there's some things that you encounter more specifically in the entertainment industry.

[Martha typing response]

Martha Anger: Most common I have encountered relate with asl interpreters’ issue among with these entertainment industries Not 100% accessible. because that is where we are at deadlock because of ADA Law Wasn’t really clear and doesn’t really work for DA for 30 years. most common problem is with “financial” how to pay interpreter Who is responsible to pay for interpreter. me as client or the production company.

Voiceover: And now it’s time for a commercial break.

Voiceover: Welcome, welcome, welcome the Springboard Foundation is proud to extend scholarships to full-time undergraduate college or university students who have a documented disability of any type. Our scholarship recipients attend colleges and universities across the United States and are currently registered with the college or university disability services office. Please visit the springboard foundation website for additional information and the application.

Voiceover: And now back to our show.

Nadine Vogel: Norma, I'm assuming this doesn't surprise you, because it doesn't surprise me. That the most common that you've encountered, you know relate to accessibility. But, again, you know how do we get around this and she said that you know Martha you're pretty clear that nothing has been 100% accessible um. I'd like to ask a follow up question, if I may, because you say it's because the red dead wrong because of the Ada so when you say that what do you mean being at a deadlock due to the Americans with Disabilities Act.

[Martha typing response]

Nadine Vogel: And I, and I asked that question because I think many ada is you know oh my gosh fabulous all the things that people, and it has but obviously you know we've come a long way there's a lot more to do.

Martha Anger: Cause most private companies will not pay for interpreter while public companies that are required by ADA lawBut most experience I had was positive cause it’s depend on an Individual… I bust my ass fighting for access and educate them about ADA lawIt’s exhausting and frustrate because when they didn’t want to deal with asl interpreter cause they didn’t do enough research or hire deaf consulting service .. that’s how they ended up cast hearing actor playing deaf role

Norma Stanley: And she's talking about the paying for the interpreter people tend not to think to include interpreters in general it's not it doesn't come to mind as readily and that's something that companies need to understand that they need to probably pay more attention to.

Nadine Vogel: Right so, so, they'll say so, I think, Norma what you're saying is that the companies will say Okay, I get it, you need an ADA interpreter, a sign language interpreter that’s fine but we're not paying for it will just allow you to bring one in is that what is that what you're saying.

Norma Stanley: MH.

Nadine Vogel: that's you know I mean at Springboard we work with really large global corporations.

Norma Stanley: uh huh.

Nadine Vogel: And it's interesting because I have found for conferences for big events evenings if someone needs to send me which interpreter it's not an issue they certainly provide it, and they pay for it.

Norma Stanley: Right.

Nadine Vogel: But I think it's when one individual need something let's say for something like this. that the company might say, well, why are we paying for this for one person, instead of a big group that's what I’m hearing and that's really upsetting to me because this podcast is about disabled lives matter.

Norma Stanley: Facts.

Nadine Vogel: And if someone is not providing access so that Martha you can equally participate or equally you know. Successfully get a job, communicate, then what they're saying is disabled lives don't matter and, and this is the thing Norma, that you and I keep, we keep hearing.

Nadine Vogel: In every one of these episodes. Yeah, we just keep hearing it.

[Martha typing response]

Martha Anger: Our mental health is badDisabled Lives Matter!100% accessible.. 14th amendment been forgotten

Nadine Vogel: And Martha I, I agree, it has to be, it has to be exhausting.

Norma Stanley: Right, it definitely would impact your mental health.

Nadine Vogel: Absolutely and you know, the lack of understanding here, and I think that you're right the companies aren't willing to hire let's say like a springboard consulting right to come in and educate them and help them understand what's needed.

Norma Stanley: Yeah.

Nadine Vogel: And the other thing Martha that that I know that is very frustrating and I’ve heard this from many people in the entertainment industry is hiring in this case hearing actors playing someone who is deaf. I know that Marlee Matlin has spoken about this, many, many times right. And I think it goes beyond death, I mean across all disabilities and you know you like you said, the 14th amendment has been forgotten. And that's just that's just sad that that really is and what I don't understand is you know we've had these lessons throughout life. For different groups different minority groups and we haven't learned whether it's women or its people of color right, you would think.

Martha Anger: Black and POC face Systemic racism and we face Systemic oppression

Norma Stanley: They’re not paying attention. And I wonder if it sometimes comes down to, do they really care right, you know, like you, saying, do they really think these various communities matter it's sometimes it always comes down to the you know I guess the money and it's sometimes having to go past just being able to make money.

Nadine Vogel: And your right Martha you know people who are black and other communities face systemic racism and then the disability Community you're facing systemic oppression. Right, I hear you, we hear you. I want the world to hear you, hear what you have to say.

Nadine Vogel: So, let's switch gears a little bit and instead of talking about you know the change instead of talking about what has been going on and what's not so good. What would you say, are the opportunities that you see opening up, let's talk about the flip side of it.

[Martha typing response]

Martha Anger: Good news, the more opportunities been opening up

Norma Stanley: Well, that's a good thing, there are more opportunities opening up.

Nadine Vogel: Yay! I always feel that way that when we talk about some of what I call the bad and the ugly right, the things that aren't going so well there's almost always a flip side of things that are going well.

Norma Stanley: And you have to live with them, sometimes, but they do exist.

Nadine Vogel: Absolutely and normal you and I as parents of adults with disabilities, we know that all too well don’t we.

Norma Stanley: Absolutely.

Nadine Vogel: And sometimes it's exhausting having to look for that.

Norma Stanley: Yes. But that's what keeps you sane too because thing on the positive rather than you know what you can do rather than what you can't do that helps you get through the day and helps you and your children maximize their potential, at the same time.

Martha Anger: Because the Hollywood and Netflix industry started to hire Deaf consulting service or PWD consulting service to work with them on set to help bring out authentic representation on screen

Nadine Vogel: Absolutely and Martha your right, I’m so glad that you brought up Netflix because Netflix just committed, pledged 100 million dollars to issues related to people with disabilities on screen. And I believe they have hired some consultants to help them with some of this work and bring out. You know what Martha what you refer to as authentic representation.

Norma Stanley: Yep.

Nadine Vogel: And we were having this conversation I think Norma, was it with, we were talking to David Renaud from the good doctor.

Norma Stanley: Yes.

Nadine Vogel: We were talking about the same thing authentic representation, and what that really means. But you know what’s interesting is that when someone is deaf like you are Martha it's you know someone's going to know right not to look at you, but once they start communicating, they will know. But what we find interesting is sometimes with a disability, unless you stated, the person really doesn't know and then we find individuals are fearing if they should talk about it or not, and how to talk about it, and you know will that hurt me will that help me. What are your thoughts with that?

[Martha Typing Response]

Nadine Vogel: As you take a really deep breath. Right, if you do it, someone’s going to bite you in the behind is basically what you’re saying. And I think a lot of people are really concerned about that.

Norma Stanley: Yeah. I think that's happening in a lot of companies also with some people they don't self-identify as a person with disabilities, because they may think it may impact their jobs

Nadine Vogel: Right, right, absolutely, and you know the good news is that you know, at an organization like a Netflix it’s not which is great, and we can use them as a model. But nonetheless it's not an easy you know goes back Martha to what you said earlier it's exhausting. Right, it's exhausting to have to work at it so hard, because it takes away from your work as an anchor it takes away from the time and energy you can spend on acting. And I think people need to pay attention to that I think that's really, really important.

[Martha Typing Response]

Nadine Vogel: Poor Martha her hands are going to fall out at the end of this.

Martha Anger: Generally, they shouldn’t fear us, we would be more appreciated when they reach out to us for consulting, immerse into learn our culture and community to help them to connect and develop a bridge to create more opportunities, more understanding, be patient, educate, they need research, reach out to the community.. that will start somewhere that will lead to open opportunity for ALL

Nadine Vogel: I just know at the end of the day of typing on a computer all day long my fingers and my hands are killing me and we’re asking you to do this fast and furious. So um and I think you're right, you know Norma I mean we see this all the time right, Martha is saying that people shouldn't fear, people with disabilities.

Norma Stanley: Right. I know and that's a challenge and it's an educational situation it's a sensitivity situation and it's you know. it's the cost of situation, I mean why can't we all just get along.

Martha Anger: Absolutely.

Norma Stanley: Exactly.

Nadine Vogel: No, it's just sad and you know, you can preach, people have to be willing to educate themselves, they have to be willing to embrace difference because difference like we said earlier doesn't mean less than. They need to be willing to be patient which people are not today, everything is multitasking and running. And I think we have to; we have to reduce this fear of just directly engaging and talking to people with disabilities. And you know, like Martha asking you, you know, we should tell everyone at the beginning of the podcast we asked Martha, what is the best way for communication, how would you like to do this it wasn't well here's how we do it if you can't do it then sorry, we can't interview you. it's about understanding what you want, as someone who’s deaf and what you need to get your message across, just like anybody, we would interview. And to do it in a way that's respectful right that provides you know, dignity and respect throughout the entire process, and that should not be something that we fear to me that's just that should just be part of the human condition, I mean my goodness.

Norma Stanley: Exactly. Should be running to it and not away from it.

Nadine Vogel: Exactly, exactly I mean I don't mean to minimize it in any way, but really. People are people are people. My goodness. So, let's ask this Martha, if we had the ability to put you in front of 10 corporate CEOs. Entertainment industry, automotive industry, it doesn't matter. What would you what tips would you give them to better connect with people in the deaf community either as employees or as customers or both.

[Martha Typing Response]

Nadine Vogel: So, just to share with everyone as Martha was getting ready to type again her poor fingers are so tired. She kind of wiggled her fingers and kind of stretches them as if we’re watching a pianist. Right, you ever see that what a pianist does before they go into. And I’m a piano player, so I pick up on that.

Norma Stanley: Okay.

Nadine Vogel: And no, I'm not going to play piano on screen.

Nadine Vogel: You know Norma, what would be really cool one day. As I’m saying I’m not going to play piano on screen. I think it would be really cool, and you and you know these individuals more than I do, to bring together some musical performers.

Norma Stanley: Sure.

Nadine Vogel: Who have disabilities and we can interview them a little bit but let them perform on the podcast how cool would that be.

Norma Stanley: That would be very cool. Absolutely.

Nadine Vogel: Right, let’s do that, I hope I hope our listeners, you know if you're listening to this podcast and you like that idea let us know, tell us, because we want to hear from you, because you know I might think it's a good idea, Norma might think it’s a good idea, but we want to make sure you think it’s a good idea. As we’re talking about that though, one of Martha’s first tips to our imaginary CEOs.

Martha Anger: To provide them an access to learn about me.. it would be ALOT EASIER if they hire ASL interpreter to save a lot of time Because in the entertainment/film tv world.. time is money As for the employers— They need to focus on our TALENT not our disabilityThey need to meet us halfway

Nadine Vogel: She says, first of all, as deaf people or individuals when we stand in front of 10 CEOs, we're not a group, but rather we are 10 individual people. I think that's really important. Right, I’ll bring my paper and pen ready or type in my mobile I’ll be prepared I’ll bring my press kit package and hand but I'm an individual doing that and that's really important, because often companies will lump everyone with disabilities together as a group right, but as Martha says, you know she's going to come over prepare.

Norma Stanley: Mhm.

Nadine Vogel: So, another tip, is to provide them access to give people in your company access to learn about the deaf community. Obviously, it would be a lot easier if they hire an asl interpreter and it's saves a lot of time. But we have to remember that it’s really important like we said earlier right, it's really important to educate entertainment film TV film and TV world time is money. Right, I mean time is money anytime and from an employee standpoint Martha’s asking that you focus on their talent. Not the disability right let's find a way to meet halfway. Because Norma, you and I have talked about this right companies are looking for top talent for innovative talent. For talent that's going to stay right, you know that’s not going to leave after six months. It shouldn’t matter if that talent speaks with their hands, they transport on wheels right. It shouldn't matter at the end of the day, what matters is that Martha is an amazing actress she's an amazing actor she's an amazing anchor on TV right that's what we want, we want amazing people, it shouldn’t matter how they come to us what form they come to us in. And I think from Martha’s point is that if CEOs will embrace that then they're really saying is that disabled lives do matter and especially so at their companies.

Norma Stanley: And I hope to see more companies embracing that concept and that whole reality, because it just has to and just like the African American Community or any of the other community, they're not a moralist their individual situations everybody is a little different same thing with the deaf community in the game has been community all of these communities, and we have to embrace the differences and see how they make everything better.

Nadine Vogel: Absolutely, absolutely.

Martha Anger: It is ok to discuss uncomfortable conversation so that way we can grow and learn. Also, I wanna add that the employers need focus on our talent not disabilities. when HIRED then we can move forward to next step with “accommodation”

Nadine Vogel: Oh, my goodness, this has been so amazing, Martha I wanted to thank you so very much for joining us today on this podcast this movement of disabled lives matter, I can tell you that, at least for me this conversation is going to impact people in ways that I think they're not ready for but they didn't think they'd be impacted. Right, because just by sheer fact that we did this podcast in the way we did it. I think says a lot and shows illustrates clearly that accessibility can be done, it can be done in many ways, it can be done in the moment and be really successful for everyone so with that I just want to say again, thank you Martha, we wish you the very best of luck in all of your roles your many, many roles, this is Nadine Vogel, co-host of disabled lives matter. And Norma, thank you for being my co-host.

Norma Stanley: Thank you and I look forward to the next show you have a great week.

Nadine Vogel: Absolutely bye-bye everybody.

Norma Stanley: Bye bye.

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates. The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advise and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast. The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or Listen Device.

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Disabled Lives Matter

Season 1, Episode 5

Co-Hosts: Nadine Vogel & Norma Stanley

Guest: Yvette Pegues

Intro: [Music playing in background] Disabled Lives Matter… here we go!

Voiceover: Hello and welcome to this week’s episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley... yay!

Nadine Vogel: Hi everybody, this is Nadine Vogel your host of disabled lives matter and joining me, as always, is our fabulous, gorgeous co-host Norma Stanley. Hey Norma.

Norma Stanley: Hi. how are you guys doing today?

Nadine Vogel: Good. How are you?

Norma Stanley: I'm wonderful thank you.

Nadine Vogel: So, we have a fabulous guest this evening don't we.

Norma Stanley: Yes, we do.

Nadine Vogel: Yvette Pegues, Yvette Pegues you are joining us with so many accolades and, and some in particular, that being that were you know, during women's history month I’m like wow time is good, this is this is appropriate. So, tell us a little you know I could steal your thunder by one do that because there's just so much going on with you so tell us a little bit about yourself.

Yvette Pegues: Sure, no happy to tell you more about myself and happy to be on this podcast we need today so much to say I’ll start with the fact that I came into my adult career as an engineer and left as an advocate, not something I originally planned, but as an engineer at IBM continuing my education for a terminal PhD at Harvard, I thought life was great. Until it wasn't and that came by way of a disease that I was born with I did not know that I was born with a brain condition, it was a malformation well I only found out about later went into brain surgery to fix it since I was told my brain would fall into my spinal column if I did it. Through brain surgery, I had the spinal cord injury I can't say if it was a nicker a seizure, but I walked into surgery, and never walked back out changed my whole career path left with a physical disability an intellectual.

Nadine Vogel: How old were you then?

Yvette Pegues: 30.

Nadine Vogel: And again, it impacted what? I’m sorry.

Yvette Pegues: So, I left with a physical disability, I was a full-time wheelchair user a spinal cord injury and cognitive and intellectual disability.

Nadine Vogel: Talk about change. In a nanosecond. Okay, Norma and I were talking about another episode how disability is a private club that anyone can join at any time.

Yvette Pegues: Absolutely and that's the conversation I have with most people who, much like myself, was innocently ignorant before being put in a position where disability was right in your face.

Norma: Absolutely. It happened to me when you know I had my daughter, and then it happened again in my late 40s when I was diagnosed with epilepsy, so I learned on both fronts.

Nadine Vogel: Absolutely so aside from the obvious how life changed in that nanosecond tell us about changes that we might not realize that took place for you.

Yvette Pegues: Sure, well the situational leadership presented itself, whereby I went from catatonic comatose nonverbal to you know what I’m going to get up and I’m going to live for my kids. And that was the pivot that I had to make at that point and that pivot allowed me to get up and be a role model to my then young boys. Who at the time we're getting bullied because mommy rolled around and on wheels and everybody else's mom was on feet, so there was a little bit of bullying there and I had all these appliances to hold me up. And, as a result of that those two little amazing people wanted to tell the story themselves, they felt like they needed to tell the story about living in a home where disability moved in without their permission. They were Okay, so they themselves put a couple of paintings together and turned out to be a published book called my mommy had brain surgery and I’m okay.

Nadine Vogel: Wow that is amazing it.

Yvette Pegues: It blew my mind, and it gave me the courage to be okay, because they didn't really, they couldn't tell they said, my life is still great my mommy is still here, you know my Daddy is still Daddy. They in that moment saw it through the lens of children, which I needed so l I got up, I think, at the time, I had to tell myself up right because I didn't have the core strength and I never laid down for more than eight hours again.

Nadine Vogel: Wow, we should be interviewing them, I want to know more about that book.

Yvette Pegues: Pretty amazing.

Norma Stanley: Awesome young men yeah.

Yvette Pegues: Well, they use it now to help others. So, it's I think it's at the children's hospital in Atlanta it's at the Shepherd Center it's at a lot of rehabilitative areas and Amazon.

Nadine Vogel: Well, we definitely need to follow up and interview them, I think I think that's the I think it's an important story to tell.

Norma Stanley: Absolutely.

Nadine Vogel: So, my understanding is that, as you need this transformation, you took on lots of new experience’s new roles, want to share some of that with us.

Yvette Pegues: I will, I will, as long as none of my engineering friends are listening. I was approached with an opportunity to participate in a wheelchair pageants so going from an engineer to pageant titleholder was not the coolest thing for me growing up, I was given two choices you either pretty or you're smart and can't be both. And what that did, for me, is it helped me understand that it's more than the beauty on the outside, it's the beauty on the inside and changing the image of disability that it's not detrimental that you've been live forward after a life changing event, so I started out as Miss Georgia. And I was able to serve as the first woman of color to hold the national miss wheelchair USA title. And then, finally, the first person ever to hold the Miss wheelchair international title and what that did, for me, is it gave me this broad spectrum of individuals who had never heard of the pageant. I got to travel the country in the world, and I got to be pretty and smart.

Nadine Vogel: Yeah, my hope is, and I haven't said this to many people, but wouldn’t be really cool if we didn't need two separate pageants, but it was you know just Miss America or miss.

Norma Stanley: Period. That’s right.

Nadine Vogel: And it doesn't matter if you walk in on two feet or you're rolling in or anything in between, you know that does that bother you Yvette at all, because it bothers me.

Yvette Pegues: I don't think that I knew enough about pageants to be bothered initially, but I will say that our talent at the time was our community service and the way that we serve individuals with disabilities and around us, whereby a typical pagent would require the bathing suit and a lot of singing and acrobatic talent, but we have had individuals within the miss wheelchair organization try out for the regional pagent and she did pretty well but.

Nadine Vogel: yeah, that’s how it should be so you know i'm a mom of two daughters i'm a special needs mom like like norma so you know I think this i'm like okay how do my girls become you. How do they grow up and become you, Norma you thinking that same thing?

Norma Stanley: Absolutely absolutely I mean Yvette it’s so inspiring to me the thing that i've seen her do you know skiing and I think you did some skydiving or something I don't know I can't keep up. You do golf. I mean, she has a way of finding opportunities to show. People how they can live fully while they are you know and whatever sport just about and and I think it's a beautiful thing and i'm excited because I would love to see her to do some of those things I don't know you know we just have to hang out with you a little bit more.

Nadine Vogel: So, Yvette how many sports do you play.

Yvette Pegues: I’m up to about 15 different adaptive sports.

Norma Stanley: wow.

Yvette Pegues: The first one, I did was ski hockey Ice Hockey with my kids and the way that happened was so amazing I was sick at the kids were going to an ice hockey birthday party.

Some strange guy came over to the passenger side and said, can I borrow your wife. Husband said excuse me. Popped me in my chair and low me onto the ice and he said will she fall and they said yes, she will but she's gonna get back up. i've been playing adaptive sports ever since i've been falling and i've been getting back up.

Norma Stanley: The one that you were skiing that was interesting how do they do that.

Yvette Pegues: So the snow skiing usually there's a six ski equipment anyone with mobility issues or lower paralysis would be sitting otherwise, but I still haven't used to upper mobility and it's it's not easy, but again I was able to do that at about 20 to 30,000 feet above sea level so was up pretty high.

Nadine Vogel: I can't do any of these things. I mean really I can’t, I've tried.

Yvette Pegues: Done tennis, basketball, gosh oh water ski gosh I can't even remember all of them jet ski a lot of really cool things in my relationship, allow me to crushed them so nascar's called me and said hey we have this new adapted vehicle we want you to try and. You know lots of really fun things and maybe it's my frontal cortex because i'm not as scared or afraid of things anymore so maybe some of that stuff went away with the brain injury.

Nadine Vogel: Well, fear definitely does get in the way of things, but i'll just tell you I took three months of golf lessons and at the end of the three months that the instructor said, you know what's your plan, I said I can't do this, and he said, thank God. So that gives you an idea.

Yvette Pegues: Golf is my favorite land sport and i've done some work with the PGA and we're definitely doing a lot here in Atlanta with adaptive sports and bringing individuals in and recognizing that golf is the most social sport out there I’ve met a lot of wonderful people on the golf course that I know I would have never otherwise cross paths with.

Nadine Vogel: Now, do you play golf or do these sports with other folks that are doing adaptive versions, or is it mixed

Yvette Pegues: it's about inclusion, you know it's not about just me having a day with people who look like me, which is not a bad thing, but for the most part 90% of the time, what I do is what everybody else is doing it just you know different equipment.

Nadine Vogel: Well, as sounds like it sounds like you know the things, you're doing are giving you platforms to do more. But on the other side, it sounds like you're getting platforms that are digging into the next level so it's a combination of the two, but I would love to just hear how one influences the other.

Yvette Pegues: Sure, so I really do believe adaptive sports is a form of advocacy and activism by physically doing it and doing it publicly and doing it boldly because I have gotten kicked out of some golf courses and I believe that's where the activism comes in and the advocacy comes in, by showing that individual and forcing them to let me in. If I pay my money, if I have my equipment that may have to let me in and a lot of times they don't expect anyone to show up so when they have equipment it's not even charged, they're working and so, if I go there enough. You know they'll be tired of my big mouth, but I believe that the way that they intersect number one is by showing up inviting others to always be kind and visible and to try new things with the expectation of success and meeting people along the way and inviting them into this movement of inclusion it's not just about diversity equity it's also about belonging so if you're doing the diversity equity and inclusion, you should naturally end up in a place where everyone feels like they belong. So that's the goal, not just one or the other but the trifecta leading into an individual feeling connected in some way.

Nadine Vogel: Right, well then, it sounds to me like when you talk about advocacy it equates to education, absolutely yes that's good it sounds like that's and that's the basis, because we have to educate people have biases, I think they know them they think they don't. They just don’t own them right. I think that education is really, really critical and I love what you said about you know they may have the equipment, but they don't expect anyone to come and use it.

Yvette Pegues: Exactly that's not inclusion that's preparing for the worst-case scenario.

Nadine Vogel: Absolutely, yes, we need diversity is about you know, inviting someone to your party inclusion is asking them to dance.

Yvette Pegues: That’s right.

Nadine Vogel: Better yet, ask them what their favorite song is.

Yvette Pegues: Yeah, that helps.

Nadine Vogel: Right absolutely so.

Norma Stanley: that's the thing when they have situations like that in the entertainment field in the hospitality areas and places like that a lot of these places. No, they don't have an opportunity to show how they are really including us, because in many times when we do go to those places, we find out that they're really not ready. For us, you know there's some restaurants here in Atlanta I’m a foodie I go to I’m not going to mess around so at least I used to before everything went crazy, but you know there's one that I used to like to go to my daughter is in a wheelchair and had to take it to the bathroom but the bathroom upstairs elevator. Well, how.

Nadine Vogel: Or their using the bathroom as a storage facility.

Yvette Pegues: Oh, my god.

Yvette Pegues: chairs, in the cubby on the way.

Nadine Vogel: Highchairs the others chair when you say some new look at you have four heads. Oh well, we are needing to go ahead and go to commercial break, so we come back, we Norma I are going to be talking again with Yvette Pegasus and just see the incredible life she's leading and in the ways that she is educating and advocating for people with disabilities, because, as we all know, disabled lives matter.

Nadine Vogel: Disability Matters 2021! It is Springboard’s15th anniversary so we’re going to celebrate in a big way with all of our speakers our honorees and especially our keynote speakers David Renaud on Day 1 and Chris Downing on Day 2 these two are amazing gentleman one wheelchair who has just rocked the world of Hollywood and the entertainment industry as a writer and a producer of the good doctor among many other shows and then there’s Chris Downing who is such a successful architect but who also happens to be blind please join us www.consultspringboard.com and register today it will be a virtual conference once again due to Covid but nonetheless you will enjoy learn and he will be inspired we can’t wait to see you there, bye-bye!

Voiceover: And now, back to our show.

Nadine Vogel: Now this is Nadine Vogel your host of disabled lives matter and we are being joined once again with my co-host Norma Stanley and our guest Yvette Pegasus so Norma why don't you take it away.

Norma Stanley: Well, you know we've been having such a great conversation with Yvette, but one of the things I was hoping, she would touch on is, as we are part of you know, this month is women's history month and I just wanted to see what she thought about women with disabilities and how some of us that are exceeding but not getting the recognition for the contributions that they're making what would you say to that, and how can we, you know help companies and people to understand that you know, these people are you, leaving behind amazing people that that can bring all kinds of value to you.

Yvette Pegues: It's a really good question, and thank you for asking, and I know you know this because of all of your marketing experience, but when I have to sit before corporate and have the conversation about access and everything that we need, and why we need it most of the answers that I give, of course, depending on the table are the stats you know people love numbers and we talked about the 6 million people in the country, who have disabilities, a one out of every four we talk about the $8 billion dollars’ worth of progress and financial support that can be added to your business like if this is a business where you serve people one in four have a disability, we have $8 billion to spend. And access is a huge return on investment, and I say that not just for people on the outside coming in, but because I have an engineering degree, I have that conversation specifically around development. There's a saying in our Community that I’m sure you're both very familiar with, but I'll say it for the podcast and this movement that you're creating. Nothing about us without us. You are creating something whether you're building a building or a program or an app you need to have someone on your team. In house or outhouse didn't come out right, but you know what I mean. The inside or the outside, to make sure that that individual is helping you to create and invite and retain individuals with disabilities, there's three of us on this call today, but if there was one more at least one of us would be disabled, if you look at that to illness accident and to aging, which we will all meet at some time either temporarily or permanently, you can see the breadth and the depth of what this Community means and how do we make that clear, well, we keep doing what we're doing. I think a long time ago I stopped trying to prove to others. And made myself my biggest advocate, so I can self-advocate and I’m the person that I compete with the most and if you do that publicly and if you do that humbly and if you do that. With this silence strength, I think you will be on this podcast you know you'll be invited to do things with other wonderful people who are doing wonderful things so for me to answer your question again is to connect. To create and to always bring Community and to what you do and I’ll say this, and I had to say this before I said I don't want to just hold the door open for the next person with a disability to come in behind me, I want to take it off the hinges so no one else has a fight as hard as I fought and have to you know push as hard as I push because that's our responsibility as the Community that we need to leave better than without.

Norma Stanley: Absolutely

Nadine Vogel: Do you think it's your different or harder for disabled women of color.

Yvette Pegues: Absolutely my intersections are on the fray right as a woman of color with a disability. The expectation is so low; I have to say I’m excited about that because you know that if I come in with a low expectation, I know I’m going to meet and beat your expectation of me so again, some people take it personally people have to be very careful with the language that they speak in those settings and be the example with that language, and also to break barriers and that That to me is as exciting as it is that.

Nadine Vogel: Absolutely, the fact that we have to do it right, I always say you know, have we not learned from history right, I mean oh my gosh Look how many things as a country we have gone through over the years. It doesn't seem like we learned from any of it, we just keep repeating it just with a different name.

Norma Stanley: Definition of insanity.

Yvette Pegues: You're absolutely right about that.

Nadine Vogel: I find that so frustrating, but it is what it is right. I’m almost afraid to ask this Yvette, but can you tell us what the day in the life is like for you like, what is it you are doing now, because you do so much, and I believe you only have the same 24 hours we do. Perhaps not perhaps you went out.

Yvette Pegues: I think I have less like you so um your invisible disability group is an organization that we started right to equip and empower and invite and include individuals with disabilities, so that organization itself takes a lot of time we have a small but mighty organization with interns and a lot of individuals with disabilities who helped to provide a navigation, so our product is our service to help individuals with disabilities get a 80% yes rate, which means a newly injured or diagnose individual will pick up the phone and get eight out of 10 yeses instead of the common two out of 10 yeses, why? because, because we can pop them into our little algorithm see where they live, what they need connect those two together so that they don't have the issue of your no more than a hear, yes, and that navigation keeps us pretty busy.

Nadine Vogel: And how do people find out about that organization.

Yvette Pegues: Well, I’m at your invisible disability.com I’m online, and you can Google me. Unfortunately, my kids google me often but the yvettepegues.com is information that I can use, I have been able to connect people in Africa to wheelchairs in America. That is the navigation power and cabin relationships that we also have in sometimes they can even say Yvette sent me and hopefully that'll break some barriers and get through some. Some great some gate threats and gatekeepers that's part of what I do, besides being a mom and besides being a wife, I am also working on my final degree my doctoral thesis is what I spend the next part of my day with so I’m actually writing my dissertation on individuals with disabilities who are creating access within the church and on mission trips because. No one wants to take someone with a disability, out of the country without liability and so I’m breaking down those barriers, because I’ve taken my kids to the Dominican Republic in my wheelchair, and our next trip is in Japan during the Summer Olympics.

Nadine Vogel: You know I went my older daughter wanted to go on a trip, it was a three-week trip to Israel. A few summers ago, and she was trying to join with an organization of religious organization that would go. And, in the end they helped her, but wow and she have to fight and advocate to get the support to get what she needed it oh my gosh it just shouldn't have been that difficult but it was.

Norma Stanley: That’s the reality and that's one of the things that I’m hoping that we can make. Some changes in regard to travel in general, because, like I said I’d love to take my daughter to everyone has enough to take a year, but I know there's some issues there with the cobbled streets in places like Italy, and you know, so you know. The Caribbean, I’m from the Caribbean, and the streets are so tiny you can barely get a wheelchair around those things so there's so much that needs to be changed, and I don't know these people are so many people willing to change them because you know they just. I don't know it's been sad because, generally, the people with disabilities, they just got put away, they didn't get a chance to live and do things like everybody else did. That all in the past.

Yvette Pegues: So much has changed and there's so many disability travel agencies happy to put you in touch with because they also do travel groups. They also do a lot of blogs, so that you can see for yourself that should not be the case, in fact I know everyone on this call feels like, hopefully, in the next 10 15 20 years we don't have to have this conversation you can look back and say well. Did they really exclude us.

Nadine Vogel: Right, you know I used to work with SAP the Society for accessible travel and hospitality and your organization others and I’m always amazed by the challenges around traveling and like you Norma, I always wanted my girls to travel with us and they have been too I can't tell you how many countries from China to Italy, I mean all over but, it always required very specific planning advanced planning and advanced planning for things that were going to go wrong, because you knew they would. Be prepared for that so in the in the few minutes we have left, I do have one question specifically, I would like to ask you if you don't mind Yvette, which is so my company's Springboard we work with corporations around the world. We work with them to mainstream people with disabilities, disability inclusion at every level candidate employee customer. You know what would your advice be if you're talking to a global corporate CEO or one of their executives around disability inclusion, from the perspective of someone who is smart successful and happens to have a disability.

Yvette Pegues: Great question, I personally think that we are all smart and exceptional we all have our superpowers and if anyone would take the time to look deeper or allow us to present it to them, they see it, and what I would tell corporate America is COVID, it would be a single word that makes our crazy looks normal because, for those of us who have been advocating for infrastructure change so that we can have a zoom call or work from home. And so many of the other things that we as individuals’ disabilities already deal with that the world is now dealing with isolation and having groceries deliver and having to wear a mask and having to connect online and remotely this is now how we live. The future is that I’ve been working with have talked about this for the last 10 years flattening what corporate looks like. Because if they want their business to continue, they need to recognize that this new generation of workers don't care what your title is they don't really care how much you pay them. They care that you're a company that cares that you're putting in as much as your taking out, and that you are inclusive, because there are so many changes going on in the world. And if you're not ready to accept and empower and support those changes in the workplace, I don't really want to work with you, I don't want to be associated with you and I want to be on the right side of history where inclusion is normal.

Nadine Vogel: Right, you know, when you say that my concern and I hope it's only my concern and it's not reality is that we don't find organizations, having short memories. When covid is finally passing and it will eventually and. The things go back in some ways to the way they were and they say oh good now can everyone back in the office no we can't have working from home like I just hope because, when we look at history, and we look at so many other issues societal issues, we find that people have short memories.

Norma Stanley: Absolutely and that's one of the things we have to really be aware of and prepare for the same way, they have short memories when it comes to black lives and what black people have contributed to society from the beginning of US history, and so we have to make sure is that it's going to take the people, continuing to advocate and activate change.

Yvette Pegues: I heard someone explained black lives matter like a husband saying to his life I love you and she response, of course, you love me you marry me. We have to hear it often you have to know that your life matters with everything that happens around you whether you're black or disabled or you have other needs civil rights needs that are not being recognized but Nadine, this is where we hold our companies accountable by not just raising their hands in solidarity but putting it in writing and changing policy I don't want favors I want policy and so as we put those policies in place and we push back. We know that, unless you change your policy because you said it out loud that accountability is in place there's never been a situation such as what removing where there's this global and racial pandemic and companies understand that if they don't change now, they won't have it tomorrow, so. Through that change and through those commitments, we can now hold them accountable, because we have it in writing on TV in their mission or vision and again this creates these footprints that we can go back and step into to make sure that they're headed in the right direction.

Nadine Vogel: And so, we can only hope with this disabled lives matter podcast that we add to that and we add to them owning this and committing to it, and not just the usual check the box from a compliance standpoint. But really being committed and realizing that people with disabilities are people first that's right please with families with experiences with skills and that, at the end of the day, disabled lives do matter and it matters to everyone, not just people with disabilities.

Yvette Pegues: And you know, because we are all one and I love what you're doing this podcast will be evergreen and we can play it back for those who forgot and ended up on the right side of the wrong side of history will put them back on the right side, so thank you, thank you for this media that you're creating this movement that you're supporting and the blessing of opportunity it's going to be on the podcast today.

Nadine Vogel: Yvette, thank you so much, this is amazing talking with you Norma, thank you for joining me on this journey as always. And this is Nadine Vogel closing out this episode of disabled lives matter, we look forward to seeing you on the radio I guess is what they used to say right next week bye-bye everybody.

Norma Stanley: bye-bye be blessed.

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Disabled Lives Matter

Season 1, Episode 4

Co-Hosts: Nadine Vogel & Norma Stanley

Guest: Terry Moorer

Intro: [Music playing in background] Disabled Lives Matter… here we go!

Voiceover: Hello and welcome to this week’s episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley... yay!

Nadine Vogel: Hello I’m Nadine Vogel your host of the disabled lives matter podcast I am joined today, as always, by my fabulous co-host Norma Stanley, Norma says hey to everybody.

Norma Stanley: Hey everyone how you doing?

Nadine Vogel: And today, we are joined by such a fabulous guest I’m so excited I’m like a kid in a candy shop, so this is Terry Moore he is known as the hottest disabled speaker, so we want to get to that title. He is an award-winning author publicist speaker consultant, in both the entertainment and the sports industry and he just happens to have a disability, so you know I don't even know what else to say and we just got started right this so Terry welcome to the show.

Terry Moorer: Thank you, thank you for having me on appreciate it, thank you, Hey Norma.

Norma Stanley: Hi how are you. Yeah, terry and I have known each other a little bit and I just love this guy I think he's so talented and he's been a blessing to me, and in my music career, so I wanted to share him with a few other people.

Nadine Vogel: That sounds great, so Terry just tells us a little bit about the very varied and accomplished background that you've had.

Terry Moorer: Oh, OK so I’m going back several years I’m 56 of it, I actually started my music career in 1986. And I was very fortunate I started working for a couple of recording studios, well actually one recording studio for free from 12 noon in the afternoon to 12 at night every Sunday for about a year it allowed me to really work with some fantastic people like Yoko Ono and boy is and David Belafonte who's Harry Belafonte’s son, then I moved on from the recording to work for billboard magazine, which was fantastic I was a gentleman that when you open up billboard magazine, and you saw the number one single chart to the number one album I would be the guy calling the radio stations in a record stores for the top playlist and a top record sales and putting that in the computer and that's how you came up with the top hits every week and after losing billboard, went to work for a record label out of Brooklyn New York called first priority music and that opened up the door for me to work with everybody from Will Smith to Queen Latifah and that was just such a blessed thing and did that for about eight years before working with a Kenny Smith from the Houston market and then I also worked for a clothing company for major damage which was run by a gentleman two gentlemen Heavy and Izzy. Heavy and Izzy started a hip hop line for major damage, but and the claim to fame was they actually started the jean company Sergio Balenté so do volunteer so worked with them and me and a good friend of mine named Jean Peterson, we were in charge of what was then called product placement putting clothes on every audit of celebrity that we could find and that's it in a nutshell.

Nadine Vogel: Holy Shmoly, that is quite the career and I have a feeling you're still just getting started so I expect to see a lot more wow, you know something that I read, obviously I know that you were born with cerebral palsy but I read somewhere that you've liked you tell people that you're, the most important person in your life right, yourself, can you tell us a little bit about what you mean by that because I thought that was pretty important.

Terry Moorer: Thank you, thank you, you know I, I believe that we have to be our own cheerleader, we have to be the one to motivate ourselves each day and we do have to treat you know. We oftentimes give everybody everything except for giving it to ourselves, you know we're doing it for the family member or a friend calling us, hey I need a favor can you do this, but we don't return that to ourselves. And you have to treat yourself if you're, the most important person in the world, because if you don't believe that your important then nobody will believe it either.

Norma Stanley: So True.

Nadine Vogel: Oh, my gosh no Norma you and I have had those conversations.

Norma: Yes, right. And it's definitely true for parents, like us, because we are the most important people to our children because they depend on us so much because of you know, some of the challenges that they face in life, I know my daughter is totally dependent on me. And so, I’ve got to be here and so I’ve got to make sure I take care of myself and so that I can be here for her.

Nadine Vogel: Absolutely and Terry, you're gonna you're gonna laugh because I like, I listened to every word, you said you know and it whether it's in a book it's other places, and so another statement i've heard you make is that success lies within the heart. That was that hit my heart actually as Norma was saying, as a special needs mom you know that was that was really important to me. Looking at my own children success, separate from mine but even just their success in life so talk to us a little bit about that because I had a lot of meaning for me.

Terry Moorer: When you know when I first decided to get into the music industry, I had just lost my real, first I moved recently from New York, I live in Atlanta now.

Nadine Vogel: Oh, I'm from New York, woo-hoo!

Norma Stanley: Me too.

Nadine Vogel: The Bronx baby, I'm like J-lo.

Norma Stanley: We're cool New Yorkers, okay.

Nadine Vogel: See, so success not only lives within the heart it lies within New York.

Terry Moorer: Absolutely, absolutely and you know New York really made me who I am because of the toughness and being resilient so yeah absolutely so you know when I when I decided to get into the music industry. I was at a crossroad in my life because I didn't really know what I wanted to do, and I got fired from my first corporate job in Manhattan and I was home one day watching prince performance at the American music awards and I remember thinking to myself wow he looks like he's having a lot of fun and he's getting paid to do it. that's what I want to do, something where I can have a lot of fun and get paid to do it all I want is to be in the music industry. And because of my passion in my life, it was just something that I just believe that I could do, even when people say oh you disabled there's nobody disabled in the music industry. And me and a gentleman by the name of Kline he was on the west coast and I was on the east coast. We literally, were the only two disabled people working in the music industry and you know my concept beyond with a third person that I know of so literally thousands of people was only three people that would really doing something in the music industry.

Nadine Vogel: Wow, so how do you think the music industry has changed or has it changed relative to people with disabilities and opening doors and being inclusive.

Terry Moorer: You know a lot of companies are still struggling with that um Netflix just made a commitment to invest 100 million dollars literally they just announced it about two or three days ago 100 million dollars into diversity for the disabled community as well as the LGBT community, because they realize that they're lacking in diversity, if you watched a lot of movies, and a lot of TV show that very seldom how a person of disability that's represented in the Shell and so even in the music side there's not really I mean first person to come to mind, Steve Wonder, that you know Mathematica but their blind and they all play an instrument right, but no one on the side of a disability that works behind the scenes, that I know of.

Nadine Vogel: So how do we change that.

Terry Moorer: Yeah, you know, we really have to get to be more media talking about it and companies like Netflix by them, investing in $100 million into the Community that's also going to put the spotlight on another company to say well why aren't you doing Hulu, how can you not doing with Netflix is doing and HBO Max I figured you'd do what Netflix is doing. So, it's got to be done when we're with people say Okay, we gotta step up the game and what's so strange about it is the disability community of the Community there's always growing I tell people all the time, you know you're born black. Your born white, you're born a woman you're born a male, that Community pretty much stays the same once you become you know born black male, you're gonna say a black male with a disability community that black male can be disabled in a car accident, you know. It's growing every day.

Nadine Vogel: Right, it's a private club anyone can join.

Terry Moorer: There you go absolutely there you go absolutely well said.

Nadine Vogel: So, you know Norma and I have been having conversations Terry about this intersectionality of race and disability. And Norma I think that that was something you really wanted to you know, have a conversation about today was you know really about how you navigate your career and navigate life as a black man with a disability. Norma, I don't know if you wanted to that comment on that.

Norma Stanley: Yeah, that's fine look I really just want to know what kind of experiences that have you had that you know you that you know that you encountered maybe that Someone assume something about you, whether they realized, you had a disability or not like a police officer or anyone. And really treated you in a disrespectful manner or did you have you had any of those types of experiences and what can we do about what seems to be a growing phenomenon in this area, where you know people with disabilities are being a special people of color are really being victimized in many ways that you know society doesn't seem to understand it's almost focused, it seems on people with disabilities.

Terry Moorer: I'll tell you from my experience on, on the law enforcement side thankfully I’m never had that that disrespect mainly because even though I’m a black male I’m a non-threatening black male. And so, when a law enforcement officer looks at me nothing all one flash off the BAT or anything like that I don't come across as threatening because of my disability I really come across more as a victim that may you know the what's the word on the misconception, is that Oh, we need help. Really, we don't need help like that, and so you know, the thing about it is when I walk into a room as a disabled black man, I feel, like, I have one of the best kept secrets. Because if I wanted to people are sort of looking at me and trying to figure out Oh, you know poor Terry and oh Look how he walks I sort of feel like they have no idea that I’ve met Janet Jackson and Madonna they have no idea Queen Latifa.

Nadine Vogel: Right.

Terry Moorer: I feel like I had that, and the table actually change a turn I should say if I’m in a conversation with someone and soon as I start saying. Oh well, I’ve done this, and I’ve done that you can just see the light bulb go off and all of a sudden, now they want to know more and I’m like oh really okay tell us more but, at the beginning, the conversation I’m just to disable guy and folly had a very lackluster life.

Norma Stanley: Right and that's an assumption that we have to change that just because you have a disability, no matter what it is that you are not living your best life and that you don't have the capability to do more and Be more than people want to allow you to do.

Terry Moorer: Absolutely, absolutely yeah.

Nadine Vogel: yeah, you know because you know look, we named these disabled lives matter right it's not just a podcast it's a movement. And something we want to put forward, but I, and I say this, all the time that hearing what you just said, makes me sad, in some ways, because it's almost like If you were quote unquote just disabled and you didn't have this amazing background your life doesn't matter as much, but now that I find out wow. And you've been out there you've been doing wow now your important baby.

Norma Stanley: Now you matter.

Nadine Vogel: Right now, you matter and that's a disconnect for me that's just that is really bothering me.

Norma Stanley: You know that society seems you know the populism, you know if you don't have a quote unquote name if you don't hang out with the influencers if you don’t, you're not you don't matter and that's something that concerns me to what we seem to be like you know what social media has caused us.

Nadine Vogel: to become right, right I think it's I think to your point Norma, it is a societal issue, but then you add disability and takes it to a whole nother place yeah, I mean that's just upsetting, even Terry hearing what you said you know, so you are non-threatening to say you know black man to the police well black men shouldn't be threatening to begin with Right and.

Terry Moorer: Absolutely, exactly.

Nadine Vogel: Right, you shouldn't be seen as a victim. Great you have a disability or for any other reasons, so whether its ability if skin color I didn't I don't care what it is, I just as you can tell this makes me just nutty, I get crazy over stuff like this And, and I, and I shouldn't even use those words because it does not appropriate words relative to mental health issues. You know, for me, I get really upset I it just it bothers me at my core when I hear things like this because disabled lives do matter and, on that note, we're going to go to a short commercial break and we're going to come back with some more questions for you, Terry so stay tuned.

Nadine Vogel: As the founder and CEO of Springboard Global Enterprises I wanted to share a little more about one of my companies, Springboard Consulting. Springboard Consulting is a company recognized as an expert in mainstreaming disability in the global workforce, workplace and marketplace. As the mom of two beautiful women who are born with special needs, I understand firsthand the issues the individuals with disabilities and their families face as candidates, employees, and customers. It is my hope that springboard consulting will become a seamless partner with every company, organization, and government agency around the world so that everyone with a disability including your families and friends will feel welcome and wanted with every purchase they make, trip they take, job they get, and everyone they meet. Harnessing the power of difference and specifically for individuals with disabilities who impact the bottom line, I see our work as not just providing a strategic advantage I see it is a business imperative. Allow Springboard Consulting to join you on your company’s disability journey visit: www.consultspringboard.com to learn more.

Voiceover: And now, back to our show.

Nadine Vogel: Hi I’m a Nadine Vogel and I’d like to welcome you back to this episode of disabled lives matter with my co-host Norma Stanley. Today we are talking with Terry Moore and oh my gosh this conversation we are getting some good stuff I gotta tell you, but if you think you've heard some really good stuff so far Norma take it away because I think people are going to be blown away by this.

Norma Stanley: Well, you know, one of the things I love about Terry is that he is an adventurer, and you know nothing seems to stop him I love that about him and me recently, he recently took a skydiving trip which terrifies me, I wanted to know how he felt about that, and why he felt he needed to do it.

Nadine Vogel: Oh, my gosh.

Terry Moorer: I don't know where it came from, to be honest with you, I can remember from 56 now, but I can remember, being in my 20s and always wanting to skydive and I’m afraid of heights. So I've always wanted to do it and the year that I actually did it one of my business partners David Lee and a good friend of mine Vaughn manager, but we all decided we're going to do a skydiving day and we went on Facebook and we said hey everybody we're going to do skydiving on such and such day and above so people said hey I’m in and, but when the day actually came, only three or four people showed up you know out of 30 people everybody chickened out, and I was actually dating a young lady at the time, and she was going to skydive with me and, of course, at the last minute, she chickened out. So, I said you know okay, I’m not going to do it this time I'll wait another time you know, but because I had paid my money up front the sky diving place said I owe you can't get a refund. I said well I’m here, I might as well just go ahead and do it, and it was probably the scariest phenomenal awesome thing that I’ve ever done just amazing and I’m looking forward to doing it one more time.

Nadine Vogel: Wow, I’m scared just listening about so my husband was an officer in the army, and he jumped out of planes. And the funny thing when you said you're scared of heights Terry so if my husbands in a plane and we start having you know turbulence he, like grabs on his knuckles get all white. Like you, he can get on a plane and jump out with a parachute and the only thing he's said to me is that the reason that's okay is because he has a parachute. Whereas when we're just sitting in a plane he doesn't. My thing is you have to get the parachute open.

Terry Moorer: Exactly. yeah, yeah absolutely.

Nadine Vogel: I think this speaks to a bigger issue of getting outside your comfort zone.

Norma Stanley: Absolutely. That’s so true and that's what music and starting to sing has done to me cause I always love to sing but I was terrified of the thought, which is one of the reasons why I became a journalist first before even considering the singing thing it terrified me, but then, when I got you know 50 I was like you know what Why not go for it and see what you can do it's the gift that God gave you don't wait until he takes it away. So, it takes me out of my comfort zone, every time I have to get on the stage but Afterwards, I’m it feels exhilarating that I did that you know, so I could understand and I’m looking for other opportunities to get outside of my comfort zone, because it makes you feel so much better about yourself.

Nadine Vogel: Yeah, and as long as you don't have a nervous breakdown in the process.

Norma Stanley: Exactly, but it's all about growth.

Nadine Vogel: Yeah, absolutely so Terry you know you mentioned, having worked with Queen Latifa and P Diddy and LL Cool J oh my gosh I just get excited just thinking about it. Tell us what your most significant memory is especially because it sounds like when you were working with them, it was really at the beginning of their careers, so you were all launching your careers together, so what is some memories from that.

Terry Moorer: I would probably say the two memories that come to mind off hand, one with MC lyte and we will say after Cisco for the event, and we are actually. We were added a villa in San Francisco for Willie brown with the mirror at the time, and if you know Willie brown history, he also dated Kamala Harris Back in the day, so Willie brown back in 1988 89 had a some type of 10 year anniversary that me and MC Lyte and a couple people went a manager that was in the band at the time And we have some downtime and we actually went to the movies together and when went to go see, Madonna had a documentary out at the time, and I remember this movie was like three hours long. The other one that comes to mind, I was in Virginia on tour one of my groups and the company that directly worked with, first priority music, was also a management company gentleman by the name of Robinson management used to manage the artist that was on the label. And one particular show in Virginia, I was backstage, and I said Oh, let me go to the dressing room and hang out for a while, while the group is on stage and when I went back to the dressing room Latifa was in the dressing room. I remember the manager at the time saying welcome Latifa to the family we're going to manage her. I gave a big hug, welcome to the family and you know high five she's like five seven like a grandmother, you know hugging you and everything so. You know she actually wanted to go in with her best friend from high school shot Kim who still works with her today but.

Nadine Vogel: Wow.

Terry Moorer: But that was a very fond memory of you know we were about to manage Queen Latifa at one point.

Norma Stanley: Tell us about those gold records and silver records you have lined up, you actually won your own award working with these celebrities.

Terry Moorer: Yeah, one of the tops is actually a when MC Late was with Sinead O’Connor. Okay, and then the bottom one is I worked on the self-destruction record which was sort of like an all-star with MC lyte and Caillat one and a bunch of other artists and that won gold and then I actually have two more of got one in the living room that the more money soundtrack from Damon Wayne.

Norma Stanley: Love that soundtrack.

Terry Moorer: Huh?

Norma Stanley: I love that soundtrack.

Terry Moorer: Oh yeah that sounds excellent and my actually have a fourth one for more money, but my son who's 23 years old he's also in music he's got that hanging on his wall, snatched one of my records, we actually have two more that I’m working on getting one Mary J Blige real love.

Nadine Vogel: Wow.

Terry Moorer: MC Lyte roughneck.

Norma Stanley: Yeah, both of them great songs.

Nadine Vogel: I know I know so Terry do you feel like it even way back then, and they just say in the day, or even now, you know how you are if you were treated differently You know by these by these entertainers or by folks in the business and, if so, how were you treated differently to your non-disabled peers.

Terry Moorer: You know, actually, it was a very it was a blessing because everyone from Shawn Combs to Queen Latifa to just trying to think of names, to MC Lyte never treated me differently if they've never bought up on you disabled you can't do that, it was always. So, what's wrong with you why can't you get up and do it yourself, so you know it's always a lot of love from everybody from Busta Rhymes to you know I met Janet Jackson twice, met Madonna twice as likely one time and just never treated any different never felt any awkwardness towards them, it was always love always to love.

Norma Stanley: You're blessed.

Nadine Vogel: Yeah, absolutely so we have about five six minutes left and I’m wondering Norma if you don't mind, I’d love to change gears just a little bit. So, Terry you know my company Springboard we work with corporations all around the world to mainstream people with disabilities and I know that you have done and continue to do some of that work and consult and I’m just wondering, you know. What changes you feel you haven't seen happen fast enough what changes you think still need to happen in corporate because um you know we do this, day in and day out and I’d like to hear what your thoughts are.

Terry Moorer: Well, I think corporate you know, you know, I wear a lot of different hats music consultant I’ve done, you know legal shield for a while I’m also involved in disability advocate, as well as public speaker I’ve done toastmasters for you to actually spoken with the Atlanta hawks and Coca Cola, and one of the things that I noticed with corporations is they need to have more sensitivity training.

Nadine Vogel: Yes.

Terry Moorer: It's really awkward when you have employees that do not know how to address a person of disability a Coworker that say. For example, when I worked at Coca Cola for about eight years, one of my coworkers was a guy by the name of Thomas black who was actually disabled. No, no, I should say, basically blind now Thomas used to work he used to cook his own food he used to get dressed like blind faith in the kitchen everything for me and we can laugh and joke about that, but a lot of time when you enter the workplace with somebody that's disabled you really don't know the right thing is the state of all things. And, to be more of what's the etiquette disability etiquette in the corporate workplace.

Nadine Vogel: Now, and I’m glad you brought that up, because actually disability advocate and awareness is one of the many trainings that we do at springboard. And it's actually the number one global best practice and most often the first practice, and I think that's important because you know, we need to give people the tools if they haven't experienced disability, for some reason personally or professionally they may not know how to engage. Right, work side by side, do so that they're comfortable they make the other person comfortable but what's really interesting is in Europe, in particular, they like to talk about disability confidence and my feeling is you can't be confident if you're not competent. And that's exactly what you're saying and that's I think in any topic right so for folks that are youngsters today just coming out of college have disabilities, want to go into the music industry, in particular, or could be any what advice do you have for them.

Terry Moorer: I would say, learn as much as you can, I actually have a website called learning music business .com, where I teach artists about learning the business. Because it is a business learn as much as you can and be able to be diverse where you know, like right now I’m not too sure if you can see it, but actually have a keyboard in my background here. And because I’ve been teaching myself for the last two years how to play piano, not because I want to you know be a musician on stage or anything but if you know just learn, you know something I’ve always wanting to learn, and if you're in a studio with let's say Bruno Mars and you're an engineer in a studio. And all of a sudden, the keyboard player doesn't show up because he's running late Bruno Mars can look at you and say hey, don't you play the keyboard also and you could say yeah absolutely so you're becoming more valuable, so learn the business learn different instruments and learn how to do a little bit of everything, that's important.

Nadine Vogel: Yes, you know that's important Well, first let me just say I do play the piano I minded and Kenyon college, so if you're in that room with Bruno Mars, and you just give me 1-800 Nadine all right just give me a call. I need to join, but I think it's important What you said is you know to kind of learn a little bit of everything, I find that today the students coming out of college they have a major and they get very narrowly focused and they do one thing really well or understand it really well but they don't have the breath right, of grievances and I think that's what you're speaking to now do you think in any way in the minute, or so we have left that it's different or if someone has a disability or something that they have to do differently or more of if they have a disability in that same vein.

Terry Moorer: Well, no, I mean you know, I believe, no matter what you want to do, you just have to plan it. Wether you are able body or disabled you just have to have a plan and a goal and just say Okay, this is what I’m going to do and make it happen so yeah just plan and organize it.

Nadine Vogel: Plan and organize it I love it.

Norma Stanley: Nadine, I just found something else you have in common, we both minored in music in college.

Nadine Vogel: Now, the more you talk, the more you find out right. Now, I think this is this is amazing and Terry I just want to thank you so much for joining us today and being willing to share your story and how you have navigated life and career and have done so in such a such a comprehensive and successful way, I am going to go back to how we started, about what you say about how success lies within the heart and that you are the most important person in your life, I think that if we truly want to ensure that people understand that to disabled lives matter. Then people with disabilities have to take what you just said to heart and realize that they are the most important person in their own life.

Terry Moore: Absolutely, Absolutely.

Nadine Vogel: Oh my gosh, well Thank you so much, I hope to have you back on another episode we'll ask really nicely, and I wish you a wonderful rest of your week Terry.

Norma Stanley: Thanks Terry.

Terry Moorer: Thank you.

Nadine Vogel: See everybody on the next episode of.

Nadine Vogel: Disabled lives matters podcast with Nadine Vogel, me, and my partner Norma Stanley.

Norma Stanley: Be blessed.

Nadine Vogel: Bye everybody.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates. The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advise and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast. The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or Listen Device.

View Details

Disabled Lives Matter

Season 1, Episode 3

Co-Hosts: Nadine Vogel & Norma Stanley

Guest: LA Williams

Guest Contact Information: 267-290-8188

Intro: [Music playing in background] Disabled Lives Matter… here we go!

Voiceover: Hello and welcome to this week’s episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley... yay!

Nadine Vogel: hello, this is Nadine Vogel your host of disabled lives matter. Disabled lives matter is more than just a podcast, it is a movement and helping me create this movement is my partner in crime my co-host Norma Stanley, welcome Norma.

Norma Stanley: hi everybody this is going to be a great show and we're really excited to bring it to you today, so you know today we're actually going to be speaking with an amazing person, Mr. LA Williams, you want to tell them about Mr. Williams, Nadine?

Nadine Vogel: Absolutely so LA is Vice President of dealer synergy, he is known as and we're gonna come back to this, the blind phone master la you're really gonna have to tell us about that one. He's had experience in the music industry which we're going to talk about 10 plus years in the automotive industry. I've had a chance to get to know him over the last month, and he is just one great guy and I am so glad LA you have joined us today.

LA Williams: Oh, thanks I appreciate it appreciate y'all having me.

Nadine Vogel: Absolutely so tell us a little bit more about your background. Let's start with that.

LA Williams: Alright, so goodness gracious for me, I always tell people listen I’m from average and ordinary town America, you know I’m saying. Like most like everybody else right just the average real black kid from North Philly, the only thing that is distinctly different about me is that I’m totally blind right. So, I lost my sight at the age of three due to having glaucoma on my third birthday, I had my twelfth surgery and lost my sight completely, so I don't say that to get into kind of pity or anything like that from anybody, I promise you. I more so just say it, because you know I'm the kind of person that you know when I was growing up and stuff like that, I wanted to be able to do all this stuff all other kids did right. And it was a problem because you know they wouldn't let me do it it'd be like Oh well, you can't do this, you can't do this, and it was really annoying to me right. So, like you know growing up of the kids would be you know playing their video games and stuff like that, or they would be you know riding bikes and stuff I’m like man, I want to ride my bike to so what I can see. Right, it was other kids that was playing video games like I said I’ll be like, so what I can't see I want to play video games right, so I will be like man, I want to play, I want to play. So, I would be doing that kind of stuff regardless and so anyway, so I just I’m like I’m the kind of person I don't want nobody putting no limits on me right, so I just I just always have had that thought process of it. You know if it can be done, I can do it, I just might have to do it a little bit differently so that's.

Nadine Vogel: Absolutely! I love, so what I can't see. Exactly I always say to people, so what I’m short. And I'm short LA, you haven't seen me in person right I’m five feet on a good hair day so. But I think that point and Norma, you and I talked about this right having both having adult daughters with disabilities, no limits.

Norma Stanley: Exactly. Exactly.

Nadine Vogel: Why do they put limits on us?

Norma Stanley: it's so easy for people to do that when they assume that there is something that they consider quote on quote wrong. But you know we can't afford to do that, we can't afford that our children and can't afford to let anyone else who has any ability not be able to use that ability and, and that's what this movement is all about to really maximize. The, the awareness of all the amazing people out there, doing some amazing things that not too many people know about.

Norma Stanley: Like LA.

Nadine Vogel: Right well la you know it's interesting because when we talk about not only no limits, I actually see your blindness, in some ways, as your superpower right. You and I have talked about that because. I know you do right because you have focused your energy on other skills right the art of sound. And tone and inflection and ability to hear things that I bet others can't relate to how they sound, how they come across so talk to us a little bit about that, because when you coach people that must be an amazing process.

LA Williams: Well, you know, one of my favorite quotes is you know, never allow the things that you can't do to distract from what you can do right. And so, my thought process is like for me I’m listening, like remember club house came out and remember the audio Apps and everything listen that's all the way up my alley right. We know that 55% of communication is visual perception body language, but a lot of times we don’t have that, especially if you talk on the phone with most people right, well with anybody right. And so, 38% is tone inflection and so, for me, I said listen that's a large enough piece of communication that people should really put a lot of energy into it right just 7% of communication is text and the words that we use in a problem is a lot of folks just want to text people all the goddamn time. Come on, now how are you going, you can't really you can't hear my heart over a text message. So, I’ve focused on you know also coming from the music industry that's the kind of the cool part about coaching is that. You know when you're talking to a customer all you're doing is basically saying in the hook to him right he just getting them locked in right getting them to really enjoy what it is that you're saying, and you know, make them continuously be attracted to you. So, for me like that's the thought process that I put behind this I like music.

Nadine Vogel: Oh so, so, but I’m curious. Let's continue on this, because how did you take that skill and turn it into something that you have been so successful with in the automotive sales industry? I remember we were having a conversation, and you know it was like, so do you also drive the cars that we're talking about. That would be a little scary. But talk to us about how the automotive industry came together for you, with this.

LA Williams: Okay, so I actually like I said I still open up a studio that was making like $60 an hour reading my studio and I got this client. Name Karena Bradley's pop artists and everything like that, and her husband Sean Bradley says to me man la if you can get pop artists to get songs to sound good. I know you can get salespeople to get phone calls to sound good right, I mean because, like I said it's just thinking ahead to the customer, and you know initially I didn't believe him like yeah, yeah, I am living my life for my life, whatever leave me alone right.

But I went down to one of his seminars and you know, he was you know just really talking to people and really changing folks lives and I'm like wow if I can make a difference, you know in music. What if I could really do what he's talking about he's gonna make it, you know how he makes a little bit of money you know. So, I said, let me, let me lock arms with this guy and really you know dive in. See it's so crazy because right now, they call me the blind phone master in the automotive industry but outside right now I’ve pretty much dropped the phone because I’m like I’m master everything that I do so I’m just the blind master now is like.

Nadine Vogel: I like that.

LA Williams: As far as coaching folks as far as coaching folks I just teach them the same way I did in the automotive industry, I treat my automotive professionals, as if they're in the booth like when they say something one way, I’m like nope don't do it again say back right, right and then do it again. So, I train them the same way and I learned that from Dr Dre. I mean Dre he'll make you say a line 75 times one line 75 times until he sounds exactly the way he envisions it so.

Nadine Vogel: I'm saying, yeah.

Norma Stanley: That's awesome because you know I have recorded my first CD about a year ago and it was an amazing experience, and I, you know, working with producers. They absolutely hear things that you don't hear, as the person who's doing the recording and you know that's an amazing and a very important part to getting that project done so that it can be accepted by who you want to hear it. And you know that's such an amazing skill and do you think that you know, the fact that you are blind has helped to heighten that opportunity to hear things because, like, like I said, my producer when he says does what he does and he's you know produce people like you know Mike Phillips, and people like that. You know it's like how did you hear that, how do you do, that is, is that an innate skill, or just something that you can learn to do.

LA Williams: Well, I actually think it is something that I learned to do something that I focused on right whatever it is that you focus on will grow. So, I’m not, I don't think that sighted people can't do some of this stuff that I do. I just think they choose not to, right. It's kind of just like you know, a new mom, right, will hear things from her new baby that a regular person is going to like, I didn't know she was wet. How'd you know he was hungry? yeah, you know. It's a certain type of cry that says oh I’m tired mom, you see what I'm saying? That's what I think it's, it's all in the brain.

Nadine Vogel: So, I'm in the right, yeah. Everything is in the brain, for better or for worse.

Norma Stanley: What you focus on is what you draw.

Nadine Vogel: Absolutely good, better and different right, you know, and the problem is when we think about just diversity in general that's part of the problem, we make assumptions. In their head is what they act on whether it's appropriate and not appropriate right and that's what I see, there's a pause. I think you know, LA you have produced tracks for some amazing people right you've mentioned Dr. Dre, but I think also lil Wayne Katy Perry Katrina Bradley's Bradley, and then you transition, I think, if I recall correctly, you are the voice for jigsaw In the SAW movies?

LA Williams: Yes, so that was a lot of fun, it was a situation where Darren Bows, a man who wrote a lot of the later versions of SAW, I met him when I went to full sail University on my tour. And he was like yeah man, you know reach out to me if you ever want to do some postproduction and I’m all excited I don't even know what postproduction is right so, so, I graduate and I sent him the email and everything and I graduated in 2004 and he reached out to me he responds to my email in like 2006. So, I mean you know it's one of those things you never expect something to come back and then it does and in 2007 I went to. Canada, he flew me out to Toronto, and we're just you know, working on sounds and different things, but the actor, John he ended up getting sick or something he couldn't do his what we call adr, what we call automatic dialogue replacement. And so, there was some scenes that he had to do where he wasn't on screen, just like recordings and things and we were playing around and I'm doing a voice like make your choice clever dog, you know. So, they were like can you really can you record that, and I was you know just thinking it wasn't serious he's like no I’m serious I really need your help, so I recorded a lot of the lines that are like kind of like off screen that are taped and things like that so it's kind of fun.

Nadine Vogel: Norma, this whole conversation just reinforces that the whole premise is, right to see, that disabled lives matter.

Norma Stanley: Absolutely, and the diversity of talent, that is available if people really want to access it, you know and so many people say they can't find like the same, as you know, in in marketing and PR and things like that they said, you know we can't find people who can do this, that and the other, are you truly looking.

LA Williams: You don't know where to look.

Nadine Vogel: That's the problem. Or they're looking the other way. That's what concerns me more

Norma Stanley: That's exactly right.

Nadine Vogel: Not that they don't know where to look but they're looking the other way, and their looking the other way because they're thinking and making assumptions about what someone can and can't do based on how they come across, la what what's the solution to this dear God, how do we fix this.

LA Williams: I wish I knew right because here's the thing for me I’ve only experienced that when I was younger right as I got older and. Maybe it was something where because my mom was a big proponent in this she's like you know you know don't be holding my son back because he can't do stuff even playing on the football team right ever like, well LA I don't know how you're going to do such as such as such and I’m like well, let me show you, right, and so, once I started to have that swag, once I started to have that carry myself like I can do anything that you can do except see, then people started like really just putting me in position, like, I mean, I guess, he can do it, I don't know I mean it's I think that I think that we do as disabled individuals, I think we have to take some responsibility because we got it we got it. We got to put out there right, we have to show and let the word I’m looking for is kind of escaping me but we gotta like you know, a glow that we can do stuff right we can't glow that oh I’m so timid and Labor no we can't do that, like you, gotta be forward so.

Nadine Vogel: Absolutely and Norma, you and I, so LA just so you know Norma and I when you're talking about your mom we're sitting here with smiles from ear to ear as you know moms with kids with disabilities and I think that we don't talk about that a lot we don't talk about you know the parents pushing behind to get you where you are so, then you can run with it.

Yeah, I always told my girls, you know you're gonna need to develop thick skin. I'm not always going to be here, you need to run with it, and I have to say that they have become the best self-advocates out there because of it.

Norma Stanley: Yeah.

LA Williams: I'm a big fan of Miss Kristin Smedley. I was trying to tell you about, I couldn't think of her name, when we were doing my show. But Kristin Smedley, she has a YouTube Ted talk that she did talking about her sons, she has to blind sons and an unsighted daughter and man I’m telling you it takes you through an emotional rollercoaster so I don't know how I can plug her, but I guess I did already.

Nadine Vogel: Yeah.

Norma Stanley: And that's true because having a child, like my daughter with cerebral palsy and she doesn't talk and she does not have the intellectual capacity, you know of somebody her age, but my goal for her Is to live the best life possible and to make sure that she gets to do things like that she can do like model she loves clothes. And you know, so we do what we need to do to make sure that she gets in front of people Whenever she can on a runway and you know you have to maximize whatever the potential is and like you say, have a little bit of swagger as you do it.

LA Williams: Now I'm telling you you're really hitting because it goes back to my quote: don't allow the things that you can't do to distract from the things that you can do there so much stuff.

That you have at your disposal that you just got to maximize that so, but you can't do the other part, nobody's worried about that focus on what you can do, and it will grow, and it will manifest into it'll, it'll you know take over the world, so I love.

Nadine Vogel: Amen so on that note we're gonna, we're gonna go to commercial break, but one thing I do want to say before we do LA just about what you just said is that that's for everybody, right, not just people with disabilities that's what people don't realize we all want to show our best selves you know I’m terrible at math, right, I am just terrible when it comes to math and numbers it's just not my skill set.

LA Williams: I got your back.

Nadine Vogel: If you think I'm going to go into a job, where I have to focus on numbers that would be really bad, but I know that about myself right. So, focus on things that you are good at that you can do, I love it. Well with that we're gonna go to a short commercial break and then we're going to come back and hear more from the amazing the incomparable la Williams.

Commercial Break: And now, time for a commercial break. Did you know that Springboard Consulting's global offerings address all segments of the disability community including individuals who are born with, or who have an acquired disability, whether visible or not. Veterans with service-disabilities, those with age-related disabilities, and parents of children with special needs as well as allies, caregivers and others who are impacted by disability in some way. Although the majority of Springboard’s™ offerings are appropriate for all industries, we deliver many programs, presentations, trainings, and other initiatives that are industry-specific; examples include Travel and Tourism, Entertainment, Insurance and many more. Visit us at consultspringboard.com to learn more. And now, back to our show.

Nadine Vogel: Hello, and welcome back to this episode of disabled lives matter, this is Nadine Vogel, your host with your co-host Norma Stanley and today's fabulous guest LA Williams. Norma

Nadine Vogel: Oh, my gosh this is, you know you've made me laugh so much through this set. It's really cool and you know it just goes to show how comfortable you make everyone that you're around LA. I've had this experience with you, the last two times we've been on together, and just so you know so thank you. So, part of this part of this conversation of disabled lives matters needs to focus on some topics that are uncomfortable right? So, Norma I’m going to turn this over to you to maybe lead us through our first uncomfortable topic and let's see where that goes.

Norma Stanley: Okay well you know, there is a real I think misunderstanding about people of color with disabilities, who tend to be you know, targeted in some ways um when it comes to issues like police brutality, I don't think the community knows just how important it is to people to understand that a lot of the people who have been. You know. Victims of that situation have been people with disabilities, and they have been people of color. You know whether it's autism or whatever the challenge was mental illness, that is something that is not being really paid enough attention to and you know, people of color are being victimized in that regard and that's a subject that I think needs to be discussed a little bit more intently than it has been. Is that something, how do you think about that? Because I mean right now, we just had the recognition of you know Bloody Sunday, I mean if people in color who have disabilities have been a part of making change from day one in our communities, the same way. You know African Americans have, you know, revolutionized the changes that needed to take place in our communities just so we can have the freedoms to do the things we do today, even though they're trying to turn some things backwards, but we're not going into that right now, but you know. What do you think about that, and how can we move into, you know, helping people to recognize that this needs to change and, and some of the solutions that we can possibly put in place?

Nadine Vogel: And LA before you before you respond I would just like to add that this podcast today is being pre-recorded right after the same infamous march, 1965 Selma Alabama protest. We want to recognize the bravery strength and determination of those marchers protesting against racial injustice and we dedicate this podcast specifically to the late Martin Luther King and the late John Lewis.

Norma Stanley: That's right.

Nadine Vogel: All the people that marched that day, so I just think that's important so LA back to you.

LA Williams: Hey, thank you so much, now that, now that makes me even feel even more honored. To dedicate something to those folks I mean you know put themselves really in so much harm's way. In order for the rest of us to live better lives, so I just want to say thank you to them again right um but no everything you talked about is 100% true and it's wild, because I mean even the George Floyd situation, I think he was a slightly autistic, there was something different about him you know. And I think that one thing is awareness, Nadine you talk about it a lot the simple fact that folks just aren't aware and so, then they treat the situation, you know as normal, I remember listening, I was talking about the time I got locked up. You know I'm saying, and you know it was so crazy because they were like you know now, it was a halfway domestic situation, and I was actually the one who called the cops because I was like yo this girl's crazy right she bout to kill me you know what I'm saying. Yeah exactly right, so it was crazy because I mean the cop basically locked me up, and it was funny because, when he took me in, right, that you know you could you could, there was not, here was an air, but the lady, one person actually said it, they were like, really Dan I’m, I don't know if the guy's name was Dan but it's like really Dan, like you go and bring the blind guy in like seriously like come on man like you know. So, not to say that I couldn't have been dangerous or anything, but I think that the people knew that you know, based on what was really going on, I was the one who needed some protection. And they didn't do that for me at all, you know it was crazy, but so what you're talking about is very real. You know there's a lack of awareness of what's happening and then people are, they're purposely discriminatory against anything that's different and so some people take the, the, account like I don't care you can't see how to do this anyway, and then some people take the account that. I'm not paying attention to that and so I’m going to just treat you just like a regular average ordinary person as you can see, shining lights in your face and stuff like that, like what do you think that's going to do. I remember one time, I was at my studio and I think I might of set the alarm off or something but, whatever. So, the guy the, the cop knocks on the door and I'm like who is it and they're like it's the police, and so I kind of like crack the door open a little bit and I’m like how you doing and I like putting my hand out to shake it and he liked just slap my hand down like oh that's how you gonna be and I’m like I’ll go back at my studio. And then he realized I can't see, he's like oh wait I’m sorry. No, you shouldn't treat a normal person like that. It's so, there's so many different situations, but I definitely believe that um number one we got to raise awareness and people got to know what to do and I apologize if I’m like staying on this, but I do jujitsu right, so I’m in jewelry jujitsu and what was crazy yesterday I’m in there and I’m working with a little guy right he's a little guy and I find out he's like hey I need my shoulder for what I do I say, what do you do he's like I’m a police officer and I’m like oh, now, this makes so much sense to me okay y'all can't see me but I’m kind of a bigger guy now I finally get to say that right I’m a bigger guy and so I’m like man I’m darn strong too man, you know you're doing something really, really good, and I said this is crazy because a lot of this is it goes into something else that I do it's like insurance we learn how to do these moves and you know break somebody's shoulder and all but you really hope that you never have to do it. And if you're really a professional if you could show the restraint like I can get you, to the point where I’m. Almost going to break your shoulder, but if you learn how to relax and if you're going to calm down, then I don't have to do it so there's little stuff like that that I think that um you know folks need to be trained it's the bottom line.

Norma Stanley: Yeah and I do believe it is a lack of training because there's a lack of sensitivity to begin with, and you know again if the people in the force are not trained properly because they don't have the right type of information in terms of how to approach people with potential disabilities or mental illnesses, then they're not going to go out and do what needs to be done, and if they have a predisposition to think of us as people of color as enemies, to begin with, then you're just gonna have a whole you know, a just a mess and that's what we're seeing in our society today it's a disastrous mess and we have to stop.

LA Williams: Yes. Yep. Hundred percent, so training all begins with training.

Nadine Vogel: Well, I want to touch on this because my frustration is that I have reached, Springboard has reached out, our company, to so many police departments around the country and in other countries by the way, to provide training and I get met with well you know we really don't have budget for that or we just completed our general diversity training that's just going to have to do for now, or, I mean just all kinds of things right and I’m just like what do you mean you ran out of budget, this is important, and the more I get a response, like that the more, just angry right, you know and frustrated I get because I think when they say that what they're saying to me is disabled lives don't matter. And that is just frustrating as heck right, because then they're saying my girls don't matter. Now it's personal.

LA Williams: So, let's ask this, what can we do about that, because I think there's got to be some solutions, we talked about you know, everybody, you know, back in the day it was a marching type situation now it's like yeah, we put that type of stuff on blast I mean. Let's do some media behind it like let's go, you know.

Nadine Vogel: Right no, no, absolutely and I, you know when I try to your point earlier la you know about you know I help people see and solve the problems they don't see for themselves, you had said that we were on break and I’m thinking okay you're right that's what we do, but unfortunately, not everyone wants to, and I don't mean this as a pun, but not everyone wants to see.

LA Williams: Until they hurt, until they feel it, see that's what the challenge is see people run away from pain vs towards pleasure so. Oh well, no, I mean it'd be nice I’d like to do the you know the amazing training that you guys have but until you feel the pain of not doing it. Now you definitely run to do it it's a shame it's kind of like you know insurance thing I talk about right.

People be like oh LA, yeah cause I’m saying yeah I'ma get it I’m gonna get I’m gonna get it, and then, when somebody in their household or you know their family goes into hospitals like yeah, I need to get that life insurance, she was talking about, you know I’m saying my son's mother I’m sorry I’m just going to put her on blast real quick right. She actually developed a form of cancer or something like that, and then I've been doing life insurance for like 10 years and she's like oh yeah, I need to be able to talk to you about that life insurance like now it's too late. You can't get it now.

Norma Stanley: It's preventative. That's the point, it's important, you don't want to wait until the situation comes and then you'd crisis management, you know it's all part of getting ready for something you know and preparing to handle it before it happens. That's just good business.

LA Williams: Yeah, you need Health Insurance after you in the hospital, but you can't get it then you know.

Nadine Vogel: No, no, absolutely and you know it's interesting you brought the life insurance cause my husband has worked in that industry for 35 years and, and you know you right people like can I still get well Oh, I guess, I should tell you I had a heart attack so that's when it comes to like you know, understanding what I need, but you know I just find even with disability right if you bring it back to disability unless and until someone experiences disability either themselves, their child or family member they don't get it.

LA Williams: This is what we need to have happen. This why I loved that program that you talked about when you video people trying to like to go through people's websites and everything that's how somebody feels it, so we need to get some video like and just put it out there that's, how can we do that y'all? I'm excited.

Nadine Vogel: Okay, another project for LA. We are going to be talking about so many more things after this.

LA Williams: I'm telling you I want in like let's go.

Nadine Vogel: Absolutely, but you know that I do want to touch on to because you're a parent, and I know parenting in and of itself is just really important to you talk to us about that talk to us about being a dad.

LA Williams: So, this is a very interesting type of situation but let's just kind of like you know, the thing I think that's crazy for me is that. My son, initially, I want to kind of think where maybe when he was about six, I think he really figured it out right because, or it was just like you know okay everything's everything, and you know I mean I had been around him and, and, he has brothers on his mom's side and stuff like that, so they have all been around me. But the one time, I think we got out of the car and he, like, took my hand and he took the lead, for the first time I thought that was kind of cool I’m like, yo he really gets it like.

Nadine Vogel: And it's amazing, little kids get it better than adults.

Norma Stanley: They sure do.

LA Williams: Yeah absolutely, but I mean I'm so proud of him right now just made the basketball team so yeah he's just you know he know how to roll he, he, he look out for me, you know I’m saying we walking and stuff like that he does like I said a better job than you know some quote on quote trained people who are trained by the wrong people, by the way, I was telling Nadine about going through the airport, where people like slow down when you coming to a step that's The worst thing you can do, don't do that so just keep it moving keep the pace going pace is more important, so, but no father, being a father man it's a blessing, and I love what you said how the kids understand it, more so than the adults do because it's all it's almost natural to'em so.

Nadine Vogel: Right. Well, they haven't had time to develop that bias right and.

Norma Stanley: That's the thing and that's where it comes from. These children that I'm blowing up today with any kind of bias, any kind of prejudice, any kind of bigotry they're being trained to be that way. And it doesn't have to be so we have to change ourselves as a society to not train our children, you know they said train up a child, the way they should go, yeah. We don't have to be this way we are choosing to be this way and that's an unfortunate thing yeah.

Nadine Vogel: Well, I gotta tell you, I, you know when talked about training and I know we're about to run out of time, what we hear a lot of training I'm sure both of you hear about is this thing called unconscious bias and that's like the new buzzword that's the training that all these companies are doing and, and I gotta tell you when it comes well probably more than disability, but I believe that when it comes to disability bias is conscious it doesn't mean that someone's necessarily trying to be mean right. But, based on their experience or lack thereof right or how they grew up or where they grew up its biased, but we have to own it. People will not own their bias and that drives me crazy.

LA Williams: Yes, I mean that's what you talked about the whole you know race thing and they just, just own it; you know what I'm saying just admit, right, that it's not something that you're familiar with you don't know anything about it. And I think when people admit like you know, like, I was thinking, I was working with Mr. Gabriel Craddick and he talked about you know yeah, I might have probably had some white privilege like people correct me and we're like well that doesn't exist are you crazy, right, everything privilege exists. I mean man privilege female privileges exist you know I’m saying look I used to have fun being on a cheerleader bus when I was in high school, I had blind privilege you know what I'm saying.

Nadine Vogel: Okay that's a whole nother privilege.

LA Williams: I used to love; can you help me put my dress on? Sure.

Nadine Vogel: Ok we are going downhill fast. Alright Norma, we have to create a different podcast for that. Absolutely, but I am so sad to say that we are out of time, oh my gosh LA it has been a pleasure, having you on this show, I hope you will join us again, and you can be sure that Norma and I are going to be calling you for about five other projects now as a result of this. So again, this is Nadine Vogel with my co-host Norma Stanley signing out for this episode of disabled lives matter with la Williams and we look forward to seeing you.

LA Williams: Put my number in the show notes.

Nadine Vogel: Okay, you got it well you know what LA, what is your number go ahead put it out there.

LA Williams: Okay, 267-290-8188. You can find me on all social media platforms, including clubhouse the blind master.

Nadine Vogel: Oh, I love that, that's so sexy, you know. See y'all next time. Bye, bye.

Norma Stanley: Bye.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

Disclaimer: The views, information, or opinions expressed during the Disabled Lives Matter podcast series are solely those of the individuals involved and do not necessarily represent those of Springboard Global Enterprises, Springboard Productions, and its employees, contractors, subsidiaries, and affiliates. The developers of the Disabled Lives Matter podcast are not responsible and do not verify for accuracy any of the information contained in the podcast series available for listening on the Podbean hosting site and/or any other associated hosting entity. The Primary purpose of this series is to educate and inform, and does not constitute disability, medical and/or other professional advise and/or service(s). This podcast is available for private, non-commercial use only. Advertising incorporated into, in association with, or targeted toward the content of this podcast, without the express approval and knowledge of the Disabled Lives Matter's site developers is forbidden. You may not edit, modify, or redistribute this podcast. The developers of the Disabled Lives Matter site assume no liability for any activities in connection with this podcast or for use of this podcast in connection with any other Website, Computer, and/or Listen Device.

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Disabled Lives Matter Season 1, Episode 2 Co-Hosts: Nadine Vogel & Norma Stanley Guest: David Renaud Pt.2

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello and welcome to this week's episode of the disabled lives matter podcast with co-hosts Nadine Vogel and Norma Stanley… yay!

Nadine Vogel: Ladies and gentlemen, I'd like to welcome you to the second show of Disabled Lives Matter, as you will recall. this is more than just a podcast Disabled Lives Matter is a global movement, where each week we interview individuals who have disabilities or in the disability community to hear how they will positively contribute to an impact society. Now what's really special about this week's show, is that it's a two-parter from last week. So we're going to here once again from David Renaud, and the incredible work that he is doing off-screen on-screen, he just speaks for himself, so I'm not going to say any more. David, welcome back to the show. Let's keep going with the conversation.

Nadine Vogel: Well, you know it's interesting because so we're building a house and um it's on stilts and so it's basically four stories and we're putting in an elevator. And the builder asked us, you know, why do you need an elevator, you don't seem like you, you know, you and your husband need an elevator. And I said, well, we don't. My older daughter, while she has physical disabilities at the moment, doesn't need an elevator, but I might have a friend over tomorrow, who does. And so right, we said… right, right so, why wouldn't I put an elevator in? And, to your point David, it was very interesting because they said, well, do you realize what the cost is to put an elevator in a home and especially if you don't need it? And that you, you know, on and on. And I said. I’m so confused because you know what the cost is of losing a friend? Right? Because they can't get in my house. I just it's a whole different way of thinking and.

David Renaud: I love what you just said it's absolutely...

Nadine Vogel: Right? And to me it's, I’m placing value on a friendship whether the person has a disability, or doesn't have a disability, it's just about I’m valuing them as a human. I want them to be able to get into my house like anybody else can.

Norma Stanley: Absolutely and that's something, that you know, my daughter is in a wheelchair, and so I don't like for her to miss anything, and so, when I go to restaurants, when I travel, the things that we do, I want her to be experiencing those things too. And so, the accessibility aspect of all of that is very important and you'd be surprised how many places on not ready for prime time. Right here in the U.S. [group laughter]

Nadine Vogel: oh yeah.

David Renaud: I hear you, it's like my, I think if I was going to start a movement in this regard my my words would be "let us in the front door."

Norma Stanley: yeah.

David Renaud: Let us in the front door, like everybody else. Like that, that, you're absolutely right, like, I feel for you, because I'm, I'm, I'm dealing with, and you know, places that are good that have "accessibility," again, it's often, you know, there's a lot of little, you know, extra things you need to do that makes the person feel awkward, and now, and we were, we have to burden that awkwardness. Well, it's, it's not, it's your problem, you're the one with the disability. So, if you're uncomfortable because you've got to you know go through the kitchen to get into this restaurant, or whatever it is, you know. You know, I don't, I don't want to march through a kitchen before I eat dinner in that place, I want to go in the front door and sit down, I’m paying for my meal, I want to be treated like royalty like everybody else. So, I get, I totally feel that and I love what you said about, you know, my in laws you know, they built, they just build a whole ramp and everything for me to get into their house. Okay, and I, I don't go there as much as they would like me to, or as much as I would even like to, it's on the other side of the country and I’m super busy. But I love them. I’m so grateful to know, my wife's sister my sister in law, they just built a whole house and they built an elevator for me, to go in and to go to all the levels of the house.

Nadine Vogel: right.

David Renaud: So, and that, yeah it was a huge, I’m incredibly grateful for them for doing that. I think there should be money available for anyone who wants to do that, in fact, I think homes should be designed that way to make sure it's accessible.

Norma Stanley: I agree.

Nadine Vogel: Absolutely, absolutely, well you know, it's interesting David, because you have so many roles in life, right? You do so much. And when I think about this issue of disabled lives matter, I also think about how leadership matters in this regard, and you've really taken the position of, you know, not, not necessarily just shouldering the burden, but helping leaders understand how to be good leaders relative to this work. And, And I’m wondering, you know if you can just talk a little bit about that. I know that you yourself have done that from the standpoint of becoming a mentor and taking the time to do that, but, but it's also when you talk about the Sony’s and the Disney’s of the world, it requires leaders to be able to take this and willing to take a stand.

David Renaud: yeah, yeah that's absolutely it. You know, I, it's funny you say that, because I was just on this panel, which is a TCA that’s the Television Critics Association panel and the title of the panel was "inclusion is not a spectator sport." Disney that put it on, a, Disney is a huge, a huge advocate in this regard for disability, that they were out in front of this before many, many other people, and, and as Sony. I just happen to work, I don't I think it's a coincidence, that I work for Sony and ABC which are probably two people that are really, as I said, really have been out in front of this, but Hollywood is getting out in front of. The CBS, I’ve done, a, an act a "lights camera access" panel with them. When I was on pure genius, which was a CBS show. And so, getting to that so, first of all you have to find it, you have to find an advocacy group. Okay, and what you're doing is an incredible form of advocacy, advocacy RespectAbility has been a big one in Hollywood that has been knocking on doors and saying, hey we we want your attention for a minute, just hear what we have to say. We are people with disabilities or we are family members of people with disabilities. And we we just want you to know we don't feel like we're being seen, and we don't feel like we're being heard, and, and, and finding people on the other side of those doors who are going, you know, what we've been looking, you know. I'll tell you something, when I first came to Hollywood, I played my, I can’t say where but I applied for a program, and I applied for a program to help me with my career as a writer, a young writer and director coming up, and they said, it was a, it was a diversity program, and they said, well what's divert? Like, why are you applying to this program, and I said, well, I don't have access to a writers room, because I’m in a wheelchair, and I can't just get coffee, I can't be a writer's assistant, you know, not traditionally the way writer's assistant is sent to go to Starbucks and get coffee, and run around town and put together sets, and do all this stuff. I don't really have access to what I need to break into this business, and they said, well, disability is not one of our categories. And I said, well, maybe it's not one of your categories, because nobody's ever knocked on your door and asked for it to be a category, but can you think about it?

Nadine Vogel: Right.

David Renaud: And they didn't take me into that program. To their benefit, they do now and I, I'd like to think that, that conversation I had with them, was the thing that provoked them to do that now. Fast forward to, you know, Disney’s where I got into, the Disney ABC writing program, several years later. And they had disability as part of, now diversity, and they were one of the first to include that in one of the big major Hollywood writing programs. And all the others have followed suit, and, and I’m not, I may have it out of order, I’m not sure, but I’m pretty sure just one the first one at least at the time of deployment went on, and so I knew that we're including, I think CBS came very quickly, right after that. Um and I’ve really wonderful things to say about the CBS program to, but, but the, the, when I went in for my interview, and I, and I got in that program they were saying they were looking for people with disabilities, because they wanted to add that into their Program. I'm not sure if I was the first, but I’m certainly one of the first may been the first to go through their program, but and it may not be true, but um, but yeah so, I’ve forgotten how we got here.

Nadine Vogel: [Laughter.] We were talking about Leadership and how leadership matters.

David Renaud: Thank you for bringing me back, thank you. Got me going on something I’m very passionate about. Yeah so, a leader, yeah so, so now, you know, with the help of RespectAbility, and perhaps me, and Disney, and ABC in their openness to this and the people like Tim McNeil who's running that program over at ABC. Lauren Applebaum at RespectAbility, that they, the doors are open and now you need somebody to come through that door that proves that there's a reason why that door should be open and and that's where it's kind of like leading from example comes in. I’m the person that and I wish there were many, many more people that they could call upon with disabilities to represent, what I’m, where I’m at, and at my level as a writer, and there are. I’m not the only one for sure I’m not the only one, but, but I’m somebody that they call and say, look here's a guy who's, you know, a producer level writer on the good doctor he's got a pilot in development at ABC, you know he's had some success, he's got into the rooms with his wheelchair and his disability. And to not only survive, but rise up the ranks, and has shown his ability, and if you will, at doing this job. So, we want you to open the doors, then we've proven that it's worth opening the doors

Nadine Vogel: Right

David Renaud: You're going to find talent, going to find talent you didn't think was there. So speaking, you know truth to power is one important thing, but also leading by example for, for powers, and other important thing, because what I, now I remember my point I was trying to make about that panel, I was just on inclusion is not a spectator sport that panel was all essentially white, white men for essentially there were, that's not totally true, but of the people who were sort of the decision-makers on that panel, right to hire people, very specifically or to do development and they've done their work. In there plenty of, not plenty, but there are many people at Disney working on shows that they could have brought in, that we're not that, but the point in that panel was it's not enough for to have diverse people, people of color, women to rep, you know to shoulder the burden of hiring people who are diverse. It's also their responsibility, because they are the people in power and how to do it right now? So, they need to, they need to do that and, and I, of course to, the opportunity to advocate for disability to be included in that, that discussion, and again I found very, I found very welcome an open-mind, minded people when it came to disabilities as.

Nadine Vogel: Right, right. Well, and I mean, look you, you've done a lot of mentoring, you know, you continue to do that, but again, even that wouldn't be an option, you wouldn't even have the opportunity to do that. If we didn't have leaders that are saying this is important, right? And we need to include it.

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Nadine Vogel: Um, I think Norma you were talking earlier, somebody was, oh I don't even know who was talking earlier about, uh the pandemic, right, there were, all been in, and I think Norma, you had a question about the impact of that, did you not?

Norma Stanley: Well, you know that it has been like you were saying, I think David was saying, also you know, how impacted we all have been, and how families adjusting, and people with disabilities, and people who are caregivers of individuals with disabilities like I am, you know, how are we supposed to maneuver successfully, and, and really make sure, that our family members and individuals that we love, get what they need. Because we're still left at the bottom of the pile of information, we're still not being included. And right up there with everybody else who's getting the information, is getting the shots. How do we, how do we break through that, that process, and do we have to speak louder? I mean, I thought we were speaking pretty loudly but, you know. Yeah, what do you think about that?

David Renaud: yeah, you're right Norma, when we do, we got to speak louder. We do, because you know, and maybe this is part of the theme, is they're kind of related themes, right? One is disabled lives matter, well if they do, then we need to act like it, and own it in a way we have not acted like it during this pandemic. And it's the way we were all used to this is already, there's nothing new to us. Just like, you know, my friend; I have a very close friend, a black friend, who when I said, wow you know it's this movement of black lives matter it's really exciting, actually was, actually before that we had this conversation, but that we, I have been aware of this problem for a long time man, you're aware of it now, but I’ve been aware of this. I’m glad you're paying attention, but it's been our problem for a long time. Well, it's the same thing here, it's we have been shouldering the burden of, not wanting to inconvenience society as people with disabilities, for a very long time and the pandemic just really shone a light on that you know. We are, we are told, well, certain people with conditions, preexisting conditions, are more at risk, so there's a big swath of society that says, well, let's just put those people away and we'll I’ll just go out and live our lives. Yep, one, like this is not happening, and we'll we'll have them shoulder the burden of the pandemic. Well, what did we do? I didn't you know get, get a bat, or whatever caused, you know, Covid-19, but yet, I’m being asked to shoulder extra burden, because if I get this virus, I’m more likely to die. So, so yeah, we are being asked to shoulder a burden, because society doesn't want to be inconvenience. And, I, look I get it, I get the counter argument here, which is, we need to open up the economy, we can't, people need to eat, they need to feed, that's all true and I empathize hundred percent with that, but, but that doesn't make it any easier for us to swallow that pill. And we need to be a part of the discussion, part of the narrative when it comes to it, because as you said, we have families to feed too. And I think often people think of people with disabilities as people who aren't working who are being supported.

Nadine Vogel: yes.

Norma Stanley: That's right.

David Renaud: Yeah, I got a family, I got two kids and a wife, I have a family I’m supporting.

Nadine Vogel: right.

David Renaud: yeah, my wife works, but I am the, one of the bread-winners of my family and we need me to make my money, and have my job, and have my income to feed my family. And I’m blessed, don't get me wrong, but there are many, many people with disabilities who have jobs they need to go to too, and you're seeing, you know, a staggering number of people dying with disabilities, because of this pandemic. You know, we need access to that sort of protection, to those vaccines. And we need everybody out there, in society to go, you know, what we're going to bear some of this burden too, so we're all going to wear the freaking mask.

Nadine Vogel: Exactly

David Renaud: And socially distance, we're not gonna have covid parties in warehouses, because we can share some of this responsibility with these people with disabilities, who are being asked to do it, but we don't need to do that, if we don't value their lives.

Nadine Vogel: Right, right, well you know, at the very, if you guys remember at the very beginning of the pandemic, I was just appalled, but they were, you know, the people that needed ventilators and they were saying, well, if this person has a disability, we won't give them the ventilator.

Norma Stanley: Right.

Nadine Vogel: because they're probably going to die anyway. I mean, I’m rarely speechless, but when I heard that, I was just like, I must have heard wrong it can't possibly be.

Norma Stanley: It was amazing, I couldn't believe it, I know what you mean.

Nadine Vogel: I know, but I think it goes back to David, what you were saying about, you know just, we have to change the narrative.

David Renaud: Yes.

Nadine Vogel: Right, we have, if we don't do that, nobody else is going to and it's just going to keep perpetuating itself, and I just, I, I refuse, at least in my lifetime, my legacy is that I’m not gonna let that happen, or I’m gonna die trying.

Norma Stanley: That's right.

Nadine Vogel. [laughter] One or the other.

David Renaud: Absolutely. Look, if I can say something, and I am not, I consider myself a relatively humble person, but I feel like this is a time not to be, you know, I I had an accident when I was nineteen years old, blue collar family, I did not come from wealth. You know, I had very little money, I had a family that, you know, my my parents, my, my very loving and caring parents both, you know, never finished high school. So, I didn't come from wealth and privilege, I came from an already a blue collar family and then I had a disab, paraplegia on top of that. I went to Medical School, I went to university, I got a biochemistry in molecular biology in grad school I was trying to find a cure for paralysis, which I didn't, yeah, yeah.

Nadine Vogel: [laughter] Next.

David Renaud: I didn't cure paralysis for our peeps. But um, you know, I went to Medical School and a lot of people said, no way, this guy's gonna be able to go to Medical School. I found a person in position of power, who support my application, and I thank the couple every day for giving me, great interview, and give me a great opportunity, I mean the other people at university of British Columbia MED school, but, you know, I did it okay, I got a stand up wheelchair when there were not very many standup wheelchairs, and I did my surgical rotation, and I operate in an operating room, I did everything everybody else did, and continue to I worked in the ICU, I worked during Covid-one as I call it, SARS.

Nadine Vogel: Wow. Norma Stanley: Wow.

David Renaud: I worked person in a wheelchair, with a disability, in that lethal deadly virus that was SARS in Toronto. I worked in those hospitals in the emergency department. Okay, you know, it was locked down. I remember going to work every day and I have so much respect for these doctors and nurses and.

Nadine Vogel: Oh yeah.

David Renaud: working out. All these first responders are working, because it is scary, good work, and put your life on the line every day, but I did it. And, and then I said, you know what, I want to, I want to work in television. I don't see a lot of people like me doing that, but that's what I always wanted to do, so I’m gonna go try and do it, and I did it, I did it, I became a TV writer, and now I’m a producer on a hit show on ABC.

Nadine Vogel: Woo-hoo!

David Renaud: So we can do it, our lives do matter, we do have value that we can bring to society.

Nadine Vogel: Yup.

David Renaud: I I like to think I helped make the good doctor, a better show, I mean, I have a wonderful show runner, and a great room full of writers, and great actors, and great people around me, but I like to think, I bring something to that room that without me, that show might be a little less .

Nadine Vogel: Right, right.

David Renaud: And that's true. Then I think every person out there, with a disability who's listening or anyone who's listening and thinking, you know, why does this, why did these people, let's add this to another, all these people want to be heard and seen, why these people now, hey you know, do we have to listen to everybody who comes along? And the answer is, yeah, because everybody matters, everybody has value that they can, that they can give and bring to society, everybody has a story to tell, and you know, some peoples are not being heard.

Nadine Vogel: right.

David Renaud: And as I said, that's what I think comes at the heart of what the disability movement is right now.

Nadine Vogel: yeah absolutely.

David Renaud: We have not been heard, we have not been seen, in fact, we have been devalued and we've been asked to shoulder your burdens, we've been asked to be the infirmed, and be on the side, and just out of sight out of mind.

Nadine Vogel: Right.

David Renaud: You know we're just going to go on living and pretending that stuff doesn't, isn't going to happen, and meanwhile everybody walking around right now, think about this, you could be disabled tomorrow, you could join this group at any time.

Norma Stanley: Any time

Nadine Vogel: Absolutely, absolutely, and I think that is, that in and of itself should remind people that our lives do matter, because David your life did not matter any less five minutes after your accident, then five minutes before your accident. I mean, at the end of the day, if we think about it that way, we should get people to get their heads and hearts around this but you know.

David Renaud: A little less, because I, I think, I was a little more ignorant now than I was before. I really believe in it, it's made me a better person, and I think better person, you know which, which has made me more interested in other people's struggles and doing more and more about other people, and, and I think it's made me a better person.

Nadine Vogel: Well, I don't know if this is appropriate to say or not, especially since we're both married, but I love you.

Group: [Laughter.]

Nadine Vogel: Is it okay that I said that? I don't know.

Group: [more laughter.]

Nadine Vogel: Well, David, thank you. I know our listeners, I know are going to want you and to hear more from you again, and again. So hopefully, David Renaud, you will join us again. But, thank you so much for joining us for the very first show of disabled lives matter, and I just can't wait to tell your story more, and more, because I think the more, we do, the more people will realize that you, like everyone with a disability, your lives do matter in more ways than probably you even know. So thank you so much, have a great evening, and we will talk again soon, thank you.

David Renaud: Thank you Nadine, thank you Norma.

Norma Stanley: Thank you.

Nadine Vogel: Bye-bye.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next Thursday. Have a great week!

View Details

Disabled Lives Matter Season 1, Episode 1, Part 1 Co-Hosts: Nadine Vogel & Norma Stanley Guest: David Renaud, award winning writer and producer, aspiring musician and father of two.

Intro: [Music playing in background] Disabled Lives Matter... here we go!

Voiceover: Hello world and welcome to the first episode of the disabled lives matter podcast with co host Nadine Vogel and Norma Stanley..yay!

Nadine Vogel: norma Stanley yay so I'm Nadine, and I am so excited to be here because disabled lives matters more than just a podcast. It is a global movement, or at least it's going to be each week we are going to interview individuals who have disabilities or in the disability community to hear how they positively impact and contribute to society. Norma i'm so glad you're here with us.

Norma Stanley: Thanks Nadine I am so excited to be a part of disabled lives matter podcast and i'm so looking forward to meeting and hearing the wonderful stories that are going to be shared, by some of the amazing guests that are going to be part of our podcast.

Nadine Vogel: Well, I gotta tell you wonderful and amazing are two perfect words for today's guest David Renaud. David is a former medical doctor. That in of itself pretty cool but he's also the producer on the Humanitas Award-winning and Golden Globe nominated ABC series The Good Doctor. And if that's not enough, he has also He has also written on the CBS medical drama Pure Genius and the ABC primetime soap Blood & Oil. He is now developing a medical drama for ABC with Sony pictures that I keep trying to get more information about, but so far not too much, but we'll keep trying, maybe tonight. David was born and raised in Canada, and I believe David when you were that 19 or so had a car accident which left you paralyzed if I recall, yes.

David Renaud: right that is right Thank you so much for having me i'm very excited to be here and i'm excited about what you're doing. Yes, so in when I was 19 I I was driving in in rural Ontario in Canada, in a bad snowstorm and I had a rollover and I became paraplegic. So before that moment in my life I had never really had very much experience with anyone with a disability, so my first real experience with a person with a disability, except obviously i'd had experiences with people with disabilities but I didn't realize, I was having those experiences. So my first real experience with the person with a disability was my own, and it was a real obviously. It was a shocking thing for me in many ways, becoming paraplegic, but it was also a culture shock for me. That was a big culture shock realizing that I was now a part of a new Community that I didn't really even know existed and then at that time hadn't really coalesce to form a community. You know people were just thinking of themselves as infirmed or sick or r blind or deaf or paralyzed as all sort of separate communities people dealing with. With their own struggles and with their own cultural differences and and I became a part of that sort of Community that has since really burgeoned into a group of people were all kind of working together, which is exactly what your podcast reflects which I love.

Nadine Vogel: absolutely you know. We we wanted to model this off to the black lives matter movement because it is a movement and it's to show that everybody's lives matter and we've been saying that all along, but people don't always listen so much and and you know they pay attention to what they want to pay attention to when they want to pay attention to it. But when we think about lives mattering it's about how we represent these individuals right how we represent them in media how we resent represent them in all walks of life. And you and I have had this conversation about you know whether it's behind the camera or in front of the camera this authentic representation is so key to everything we do so, I wonder if you could talk a little bit about that.

David Renaud: yeah yeah Firstly I just I do love this notion of, and I know a lot of people have sort of been very inspired and excited about the black lives matter movement and and But I think what's really. You know, and people have often tried to sort of negate the movement by saying all lives matter blue lives matter you know. And, and what what where I think it's actually applicable in this case, and not in those cases, is that we all know, black lives matter. We all know, you know because plenty of people are being if a if a white person gets you know shot by a cop, we're well aware of that, you know that happens much rarer but, when it happens we're well aware of the quote unquote tragedy of that, and what I think is similar here is that the black lives matter movement is really about people who had been saying something for a long time, and not being heard. And for a long time that community has been saying we are afraid of the police we're afraid to send our sons and daughters out to school out in the street to walk around on the street, to go out in society to drive a car for for the love of all that's holy okay. Because they're afraid that they're going to get shot or killed by the people, who are there to supposedly protect us.

Nadine Vogel: Right.

David Renaud: and no one's listening and now here, I am in my apartment in L.A. you know, in April and May of this year and i'm hearing people making a lot of noise and and i'm seeing the faces in those crowds and they are not just black people.

Nadine Vogel: Right.

David Renaud: they're white people Latinos know every every every part of society, and let me tell you, people with disabilities are out there,

Nadine Vogel: Yes.

David Renaud: everybody's there, and people are listening because The because people are finally ready to hear this message, and this is a movement that has had the power to to basically turn a republican President democratic. Without the vote of the black lives matter people in that movement you wouldn't have Joe Biden sitting in the White House, right now, so that's a powerful thing. And I think people with disabilities are starting to want to be heard to we've always wanted to be heard that's not fair, I think we're ready to make people listen. And been inspired by what the black lives matter movement has been able to do and continues to do and continues to struggle to do. we're early in our our movement sorry. we're early in our in our movement, but I do i'm very excited by the energy and the disabled community and the fact that disabled communities kind of coalesced itself together and a few of these organizations that i've become very aware of over the last few years, the more sort of prominent I become the more organizations have sort of reached out to me and i'm excited to be part of that. And to see, like so many people getting together and working together. So so yeah i'm very excited i'm excited about this notion of disabled lives matter I mean. i'm excited about the comparison I don't think it takes anything away from the black lives matter movement in fact I think you know, we have some of the exact same goals and agendas. Not all but some of the exact same goals and agendas and as everyone knows, there are many, many black and Latino and Latina X and every other. race and culture and religion represented in the disabled Community we're. Definitely a small society.

Nadine Vogel: Right well you know you you touched on, you know police brutality and things like that and norm and I were just talking, the other day that you know just as many people who are disabled succumb to police brutality, as people in the black and brown community but nobody's talking about.

Norma Stanley: that's what i'm saying. that's right.

David Renaud: Absolutely people with autism that friend yeah I mean mental absolutely absolutely again, we have some shared you know it's interesting many great movements in history have have often been many groups. of people who, on their own can't be heard, but get together and all the sudden their voice is just so loud, you know, and I do, I was very excited I was on a.panel this just this week a TCA panel which is is the television critics association panel and Disney had put together a panel talking about inclusion and. You know, it was really about inclusion in the meat in media and how we're representing all kinds of diverse voices in the writers rooms and onset and one of the things I brought up in that panel was disability. Because it's something people don't talk that much about.

Nadine Vogel: Right.

David Renaud: but are talking about it now Disney particularly is very been very, very supportive working with RespectAbility and i've done a lot of work with them mentorship with them. But but absolutely you know, working together with other diverse communities reflecting that we're having the same struggles and the same challenges we have the same wants, and the same as ours, and the same potential.

Nadine Vogel: Right. Right. Absolutely, and you know. You and I have had this conversation that the media is so powerful the entertainment industry is so powerful in getting messages across. But it has to be authentic messages right authentic representation So how do we ensure that the authenticity is there because I think otherwise. It takes away some of this disabled lives matter because we're not using people with disabilities in these different roles I don't know what your thoughts are about that.

David Renaud: yeah I feel very strongly about, I think, look over time, you know, there was a time when. You know that people wanted, if you wanted to have a Latino character, or a black character on a movie or TV show you they did blackface.

Nadine Vogel: Yeah.

David Renaud: yeah okay.That I mean that would be preposterous now.

Nadine Vogel: Yeah right.

David Renaud: Right, I mean that would be I mean I can't even imagine.

Norma Stanley: That would be trouble making if they did that today.

David Renaud: I would be insane right, but yet still you know, to this day we see people with disabilities. represented by everybody people make you know and film themselves now, arguably, you know you can say well there's not the talent there's not. If we can get a big bankable star we're much more likely to have a successful story, and to some extent I agree when you're just trying to get those initial stories out there and say hey we're here. we're a Community people want to hear our stories we want to tell our stories then whatever way, we can get it we're happy to get it, but I think now we're we've in the last couple years we've had some wonderful success in that regard. and I think now we're ready for is exactly what you said, which is authenticity and and authenticity means us telling stories that only we can tell. we need to be the people writing those stories we need to be the people weighing in it's not just enough to say. I am writing a show that has a lot of you know Latino characters so we have a Latino consultant, you know. You want to have a writer's room that has voices in that room that are reflecting the stories you're trying to tell.

Nadine Vogel: right.

David Renaud: Right and and I think that's absolutely 100% truth disability, I think we need disabled writers disabled actors disabled crew disabled tumor talkers disable directors disable producers.

David Renaud: You know, we need executive producers, we need people in control of those stories we need people who recognize what is an authentic disability story

Nadine Vogel: right absolutely.

David Renaud: Absolutely absolutely experience.

David Renaud: How can you know what what a real disabled story is what a real disabled voice is what that looks like you know we've had so many wonderful shows in the last you know 10 years that really give us a window into different cultures. they're told by writers of those you know, one of my wonderful writers I love is shonda rhimes you know she tell amazing stories and in a way that it's just so unique to her who she is as a person. And, and you know what. I feel like we have those stories to tell ourselves.And you know, there are many I can cite many examples of different. People from different diverse backgrounds were telling they're starting to tell their stories now.

Nadine Vogel: Right.

David Renaud: I don't think it's equitable in any way, shape or form, I don't want to apply that but. What i'm saying is it's exciting to see those stories because of their authentic and they feel real and you feel like you're getting a window into. To something interesting in new either that you can relate to because it's your story too, right, or that you haven't really seen in that way, so that's an exciting thing to watch and and I think that should be true of disabled stories.

Nadine Vogel: yeah no absolutely norma you, you had a question I think about you know the disability narrative right and and how that works, did you want to ask David about that.

Norma Stanley: Well yeah I am you know I agree with everything you said, and you know, one of my missions is to make sure that we heighten the visibility of people. In the Community who have disabilities who are doing some amazing things that's the same thing that with a Nadine wants to do, and you know in regards to. The disability narrative you know, could you kind of share how important it is to you to make sure you send a little bit about the authenticity, but as a leader and as somebody into a particular profession. You know what would you like to see how would you like to see the narrative be you know displayed and shared moving forward.

David Renaud: thanks for that question Norma for me it's it's it's really you know, there are, when I was first disabled and I watched TV, most of the characters that I saw on TV were either the butt of a joke. or they were an inspirational story something to tug our heartstrings you know we we were used. As people to go oh my God what a horrible situation this person is in how do we save them and make them normal again and the happy ending is they get normal you know. They get cured of their disability or order it's a joke you're you're a joke, you know your property in a joke, and some very funny you know movies, that I laughed at and enjoyed looking back at them now to this new lens that I have as a person with a disability, I go how really. What a low opinion and without what a terrible narrative we've created for people with disabilities.This is, and you know what I know of the people that I know with disabilities is, they are a. Big broad.Interesting eclectic group of people with wonderful skills wonderful senses of humor of their own, which has a totally different. shape to it than the kind of humor that i've seen portrayed in disability very early on in my in my experience and and and people capable of amazing things with amazing potential. And it might not be potential they're able to reach because narratives have been created again in the way called stereotypes and you know many diverse communities are used to trying to navigate a world where they're faced with these destructive stereotypes. So I don't when I tried to tell disabled stories I don't lean into that stuff now I go the opposite, I tried to tell the stories that I see happening with the people that I know. You know I told a story about you know, on the good doctor about a little person, a person with a pseudoacondroplasia. who had two girlfriends.

Nadine Vogel: Yep.

David Renaud: that was based on an experience of person with the disability that I knew and that's not a stereotype that you commonly think of when you think disability, that there are ladies man.

Nadine Vogel: Right.

David Renaud: You know. So yeah breaking the mold creating a narrative that you can be successful that just because you don't talk the same walk the same sound the same see the same that you are capable of amazing, and you know and wonderful things just like anybody else right.

Nadine Vogel: Exactly absolutely well on that note we're gonna move to commercial break and when we come back we're going to hear more from David Renault and all the incredible things he's doing and why he's doing it and the impact it's having on all of us.

Commercial Break: Hey, have you heard about the Disability Matters Conference & Awards program. It takes place annually in North America, Europe, and Asia-Pacific. If you are a corporate employee who supports and engages people with disabiloties this is the confrence for you. To learn more visit consultspringboard.com and visit the events section. I hope to see you there!

Nadine Vogel: hello, this is nadine vogel and i'm joined by Norma Stanley my co-host this evening with the fabulous the famous David Renaud and we are talking about, we have been talking about the media and its impact. And I want to really hone in now David if we can on this issue of if someone's lives someone's life matters, the way you show that is by including them and giving them access, my concern is that when we look at the inaccessibility whether it's digital physical I mean all kinds. I feel like we're saying that the likes and don't matter and that's very upsetting and unsettling to me i'm wondering what your thoughts are on that.

David Renaud: yeah I have very strong feelings about this. As you can see, have strong feelings about a lot of things, I guess, but it is a particularly one that that that I think we need to really, really take a look at how we think about. Because I think we, when we think about you know accessibility in society, often what we think about is wheelchair ramps or stoplights that talk, you know. I think we think about accessibility as modifying the existing infrastructure, so that people with disabilities can get into. And really what we should be talking about is universal access because universal access assumes that everybody is going to need to come into a building. We all need access to that building so it's designed in a way that allows everybody in. And that's true physically, you know I don't think I should need to go through the kitchen to get into a restaurant because that's where the ramp is. And I also don't think I should have to bear the humiliation of sitting in front of a flight of stairs well somebody goes to the back and gets a ramp that hasn't been used or gets an elevator that they can't find the key for so that I can go through this humiliating attention drawing. display of trying to get into a building physically. So universal access, I mean we essentially when we build a building we create a barrier to people with disabilities, when we design it. We build it that my house has no stairs to get into it here, it is possible to build a house with no stairs. And I have no problems with no stairs I don't have water leaking into my front door, I have a perfectly fine home that has no stairs yet still to this day. We build buildings every day that have stairs and then we build these elaborate ramps etc to get into them and i'm just talking about physical access for somebody.

Nadine Vogel: Right.

David Renaud: Now people have all kinds of challenges for accessing society that we don't take into consideration that would be easy if we inconvenienced ourselves for a little bit. And thought about how do we make this universally accessible to everybody. Now that what a huge barrier, that is, if you want to get into a job in a writer's room i'm just talking very specifically about the twofer i've had between medicine and writing. You want to get into a writers room or you want to go, and you know do an internship in a clinic like I did when I was starting out as a medical doctor that's on the third floor. of a building the no elevator wow I going to do that i'm gonna i'm going to be carried up those stairs and when you watch your doctor carried up those stairs how confident, are you gonna feel. Having watched them carried up the stairs so. And that's true of you know, when I want to go and take an interview and take a meeting on a show and that show is in a two story building with no elevator. so and that can be said for any industry anywhere, then england's trying to break, if you want to be a pilot or you want to be an astronaut, or you want to work in you know in as a food service. person whatever you want to do, you need access, so I think that's The first thing is to stop letting ourselves off so easily as a society by saying you know what we. We don't have a responsibility to just design it this way we'll just retrofit everything let's just let's not make us bear. Now i'm just about to get into something i'm really passionate about. let's let's shoulder the burdens of society that doesn't want to be inconvenienced

Nadine Vogel: Right. right.

David Renaud: We can and we'll talk about the pandemic in a minute when it comes to that, but but but yes, now that access also comes to you know people with you know learning differences people you know with mental health issues where we create barriers, by the way we interview people for jobs. I process of applying for work, by the way, you know meetings are conducted, you know, there are all kinds of you know we there was a writer that I. Was got had the pleasure of getting to know through the Disney program who is hearing impaired so when you go into a writers room and you're hearing impaired. Now this writer can read lips, thankfully, but that's that's the challenge to go into a writers room everyone's talking really fast right to say well it's going to be too hard so. We really can't have very we'd love to have great to have that writer, but we can't because it's going to be too difficult or do you rethink how you run your room how you run your show have to make sure that anyone can come and do that job so removing barriers.

Nadine Vogel: Ladies and gentlemen, I know we had promised to keep these podcasts to about 30-minutes, but this conversation with David Renaud has been so important. And, and, I just can't let it go. So what we're going to do is make this a very special two part and so stay tuned as our second show will be welcoming David back once again to hear about the amazing work that he's doing and his commitment, not only as someone with a disability, but someone committed to people with disabilities. To show that disabled lives do matter. We'll see you next week.

Closing comment: [Music playing in background.] Thank you for listening to this week's episode of disabled lives matter. We look forward to seeing you next thursday. Have a great week!

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