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Robbie Kopp and First Sergeant McDaniels discuss their work creating the nation’s first school resource officer/disability policy. The two talk about how the policy works and how can be implemented not just in schools, but throughout our society. First Sergeant McDaniels also shares an impactful story about how his work creating this policy and his personal life intersected.

Big announcement at the end of the podcast!

Disclaimer

Able South Carolina is providing this podcast as a public service, but it is neither a legal interpretation nor a statement of local, state, or federal legislation or policy. Reference to any specific product or entity does not constitute an endorsement or recommendation by Able South Carolina. The views expressed by guests are their own and their appearance on the program does not imply an Able South Carolina endorsement of them or any entity they represent. If you have any questions about this disclaimer, please contact us at advocacy@able-sc.org

Episode Transcript:

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00:14 Chris: It has been 11,087 days since the Americans with Disabilities Act was passed, and you are parked in The Access Aisle.

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00:32 Chris: Welcome back to The Access Aisle, everyone. Thank you for joining us. We have an incredible episode for you today. We continue our interview with Robbie Kopp, and First Sergeant Walter Shawn McDaniels is a 24-year vet of the Richland County Sheriff's Office. We feel really honored to have you here, First Sergeant McDaniels. You bring such a unique perspective to this conversation, one that doesn't usually get brought to this conversation, one that's usually left out, and so to have you here to open up with us and to be vulnerable definitely brings a fresh air to what's a normally stale conversation.

01:15 Chris: Today's interview should be of great interest to any parent, to a child with a disability and any student with a disability, because Robbie Kopp and First Sergeant McDaniels are gonna talk publicly about the work that they've done to create the nation's first school resource officer/disability policy. One of the larger unintended consequences of having police officers in schools is that students with disabilities, especially black students with disabilities, are being referred to the SROs at a higher rate and more often being criminally punished for actions or behaviors for which they normally would not have had to face legal action or consequences prior to SROs being in schools, and so this change has had a dramatic and negative effect on a lot of students with disabilities.

02:15 Chris: So Robbie Kopp and First Sergeant McDaniels, they talk about this collaboration between the Richland County Sheriff's Office and Able South Carolina, how it originated, what the policy says, and how it can be used as a model, and not just in schools and education, but also throughout other institutions that face issues of racial inequity and just the American culture in general. There's some really fascinating stuff here, I hope you enjoy it. Before we start though, last week, I teased a huge surprise announcement. I have it for you, it's burning in my hands right now, but my producers tell me that we have to wait until after the interview. So we have a huge announcement, it's going to happen, we're gonna give you this announcement, but we're gonna do it right after the interview. So without further ado, Robbie Kopp and First Sergeant McDaniels.

03:10 Robbie Kopp: I wanna talk a little bit about the work that we did... This is not not our first conversation. [chuckle] The work that we did with Richland County around student resource officers a few years ago. It started maybe not the way that you would have liked. [laughter] Do you wanna set the stage for how we met?

03:30 First Sergeant Walter Shawn McDaniels: Sure. Sure, I can. So back in 2015, May of 2015, the United States Department of Justice received a two-prong complaint against the Richland County Sheriff Department School Resource Officer program. And the complaint, well, the complaints were that African-American students were disproportionately getting arrested and that school resource officers were dealing with students who have a disability from an uninformed position. And so fast forward to October of 2015, for those of you who remember, that's the same month that we had the 1000-year flood here in South Carolina, Columbia.

04:17 FM: Two weeks after that situation, we had an incident that occurred at Spring Valley High School involving a white male school resource officer and a black female student. And, of course, you know that got CNN attention, nationwide attention, it was globalized on a grand scale. And so, of course, the Department of Justice put a halt to their initial investigation into those two accusations that I mentioned earlier. And after they closed out the case involving Spring Valley, Sheriff Lott decided that in conjunction with the Department of Justice, they came to a mutual agreement that, "We need to look into the accusations, we need to conduct some research, we need to try to measure and become data-informed in those areas," and we did that for a three-year period.

05:18 FM: I was brought in as one of the liaisons to help with facilitating that research. It didn't help at the time. At the time, I had just started the PhD program in conflict analysis and resolution. So mind you, it was a professional PhD, in addition to an academic PhD that I had to start. We were required to develop a report at the end of the second and the end of the third year. But prior to that, in looking at the evidence early on within the three-year period, we discovered that we did not have the advanced training that we needed to have in the areas of disabilities, and we wanted to get that as soon as possible. As a matter of fact, for the research, even through the Department of Justice, the Office of Civil Rights revealed that it wasn't just us that this problem is stretched across the country within law enforcement as it relates to the area of disabilities. And so we've had to come up with a policy to address that, and so that was one of the first problems that we attacked.

06:32 FM: And so I know that I'm not smart enough to develop such a policy by myself, 'cause again, operating from a law enforcement position would have limited my knowledge of what that looks like and what needs to be brought to the table. And so we reached out to several organizations. We reached out to Lexington-Richland School District Five, we reached out to South Carolina Able, and that's how I met... That's how I met you, Robbie, and then you came in. And we also had a child psychiatrist, we reached out to P&A law firm, a leading law firm here within South Carolina on behalf of the rights of children.

07:17 FM: And I remember the first meeting. If you don't mind, I'd like to talk about how... [chuckle] How everyone came to the meeting naturally. There was some defensive jockeying, if you will, some defensive positioning, because we were so used to operating within silos, and it's pointing the finger at one another in terms of where the problem lie. But there was this period, and I'm quite sure you felt the same way, you could speak to it on your own, but where we began to externalize the problem and we began to mutually learn that we each had a contribution, and dealing with the conflict of the absence of education and training in the areas of disabilities. And so from that, Robbie, as you know, we developed the nation's first school resource officer disability policy, and it was just awesome how that came together, yeah.

08:21 RK: Yeah, and I'm gonna make that policy available when the... As the podcast is released or wherever you access it from, whether it's the Able SC website or the Access Aisle podcast page, there'll be a link to that SRO policy so that you can get into the weeds with Sergeant McDaniels and I and really look at the work that took place and what was needed. I think just for me, in that experience, seeing the overlap of African-American students and students with disabilities, and how they were both getting... They were both having interactions with law enforcement through the SROs that weren't equivalent for other groups. For me, I think that was one of the biggest pieces. And I note that it's probably my privilege has made this possible, but this was the big crossover that I saw between the disability community and students of color, knowing that this was happening and that students were being taken out in handcuffs and for relatively minor infractions, and that damage was being done at the school with peers and students were being labeled as problems where they may have been working through some behaviors related to their disability or some of the trauma that they had experienced at home.

09:47 RK: So I, in the last few weeks, have really thought back to this policy and the way that it has changed interactions with SROs in Richland County, and hoping to see something systemic and wanting to see something systemic for law enforcement beyond that. We had some conversations around law enforcement response and making sure that law enforcement are always... They're always safe, but not at the detriment that they're using excessive force against a student, and I think we're seeing other manifestations of that in law enforcement and other places.

10:28 RK: Sergeant, what was... There's one thing that I think stands out for me the most when we were working on this policy, and that was really identifying the tools that law enforcement have. Does... I wanna see if the same thing stands out for you without me saying what it is. [chuckle] We talked about a tool that hadn't really been used. First, assess the safety of a situation. And then second, was being able to use time as a tool to help de-escalate a situation before there was a physical interaction, before there was charges filed, but that there was a chance to... For the law enforcement presence to be known and for the student to re-center and make sure that they're in a place that they can have a conversation around their behavior. Do you remember that part, and when we were really nailing that and feeling comfortable? 'Cause I feel like that was a bit of a watershed moment for the group.

11:23 FM: I would agree. Actually, you're talking about the TIER strategy that we came up with, and TIER is an acronym for Team Intervention Emergency Response. And I remember when the aha-moment... Now, mind you, just to help our listeners internalize that process, it was a facilitation, for lack of a better expression or example rather, the facilitation where we... You get representative from different factions, and we all come together to address a common conflict, and we began to... After the first meeting and everyone was able to voice their... They were allowed to be... It was a safe space to be emotional, it was a safe space to be... To question one another.

12:15 FM: And once we got past that, we saw the need to not work and to not operate within our own silos, but to see the importance of mutually learning and moving forward with externalizing the problem. We externalized it, and so it was no longer law enforcement's fault, no longer education... Educator, and at the education system's fault. We... It took flight. And I think the moment that you're talking about is what... That's when we all recognized a shift, if you will, in how we began to operate as a unified team dealing with that externalized problem separated from the individuals, and we started moving and we came with the TIER.

13:05 FM: I remember we were all excited about what does it mean? And we... Everyone knew that safety was first and foremost, which that satisfied my concern, and from a law enforcement perspective, and then we began to say, "Well, how do we get the teachers, the school resource officer, the school psychiatrist, to the counselors to begin to work together?" And we developed the TIER system, and it consisted of Tier I, which was... And I'll just read from it. Tier I is where the SRO provides a supportive presence only either in or outside of the classroom or a specific area as specified by the school's behalf. In this tier, there is no need, there is no need for the SRO to have direct contact, and again, while still assessing.

13:54 FM: Tier II is the SRO provides a supportive physical presence and assist the school faculty in using de-escalation and other advanced mediation techniques; clearing the classroom or moving furniture out in an effort to help the teacher navigate that problem with the student. And of course, Tier III is when there's a need for law enforcement to intervene, and when safety becomes an issue. And so that was crucial, to develop that TIER system. It speaks for itself, it's about the team and not necessarily calling the muscle, being the school resource officer, to come deal with a school-related problem.

14:35 RK: Yeah, and I... With every instance of either police brutality or police showing up to a scene and on reports of violent crime that aren't substantiated, and how those situations escalate so quickly, I keep thinking about this policy, I keep thinking about how that little bit of time to assess the situation and to make sure that as long as everybody's safe, then we can be okay with being safe and taking some time is... It just, it comes back to me every single story. And I think it's so much a part of, I'm having a hard time saying this clearly, that time has the ability for us to see past that initial response, where that initial response is... Because it's quick, it's more likely to be influenced by that, by that bias, and when we're able to have that breath or that half-breath to realize what's happening, that the situation can go differently, and without that time with actions that are the difference between quick and hasty, having a huge impact on the lives of people. It just seems more and more necessary to me that when interacting with a person with a disability, maybe knowing how their disability may impact that interaction and being prepared to navigate that without the use of a weapon, I think is tough.

16:12 FM: Yeah, one of the challenges that we have within law enforcement in dealing with students who have a disability is that parents struggle with their child being labeled as someone with a disability, a student with a disability, because they believe that they're... Again, 'cause they're conscious of some of the negative stigma associated with it, and they don't want their child to have to navigate through that obstacle, if you will. And so oftentimes, some of the students and their disabilities, they're not acknowledged, and so an officer doesn't have access to that information.

16:58 FM: And we noticed that during the study too, that you had a good number of individuals who were suffering with a disability, but suffering... When I say suffering with it, I mean because they were not given the opportunity to receive appropriate modified services. Appropriate, appropriate as it relates to their disability, not to the extent of treating them different in such a way where it limits them even more or it's unfair, an unfair distribution of services. No, it was they were silently dealing with some of the limitations unjustifiably placed upon them every day.

17:48 FM: And so it boils down to the absence of communication, the... When the negative stigma stops the parent from sharing, then of course, the end result is an interaction with law enforcement or with an authority within the school, an authoritative person within the school. And we're not able to service the child properly, which is why we train our officers in the area of disability identification, and the areas of autism and mental illness, well, mental wellness rather, and what does that look like for our student body today. We did that for three years in a row, provided that training, and so we need to continue to do that.

18:42 RK: Yeah, I think for me, in doing that work, I kept thinking to an example of a student who would be impacted and may have had a negative interaction with law enforcement. You mentioned autism, for me, the example was a student with autism who there was too much stimulation in that environment, and needed to be able to process and cool back down. Knowing that if law enforcement came in heavy into that situation, that it was only gonna escalate, but if an SRO is able to stand in the doorway and to give the teacher the support and even move other students out so that there's less noise and less stimulation, then that would be beneficial to the student and you can address the behavior when the student is ready to be back in that place. So that's... I think that's... The real life examples help to really shed light on what was happening and what could have been happening instead.

19:40 FM: I'd like to share this one story, this is... It's almost like a watershed moment, at least for me, it was. If you remember where my office was located in the back of Spring Hill High School where we first started meeting in that small little closet. And up until that point, I did not know that that was primarily where most of the students who were dealing with challenges, disabilities, if you will, that they were actually... Most of their classes were back there where my office was positioned. And I remember once we developed the TIER strategy, I remember sitting in my office and the door was open, and it seemed as if... This is... It's gonna sound crazy, but this is an actual true... This is a true story. Whenever I looked up, I would see one of the students go by and it just... Our eyes would connect, that seemed crazy to me. So I knew that it was... Creating the nation's first disability policy for law enforcement was bigger than us, it was bigger than us.

20:52 FM: And I remember noticing that everyone seemed to say hello to me, or nod their head. That was crazy. And in that moment, Robbie, this is true, I got a phone call from my son's teacher who, at the time, he was in the fifth grade, and another student's parent came in for a conference, and this particular student had a disability that not many of the kids knew about, some socialization challenges that caused him to have some socialization challenges. And so my son... The parent actually wanted to commend my son for making sure that everyone treated and gave this particular student the opportunity to play in the football game, and how he... And it really broke me down honestly in that moment while I was penning what we came up with as a group into our template, our policy template.

22:03 FM: So I saw the student... Imagine, I saw the students walking towards me while they were changing classes, giving me non-verbal cues that they were behind me, and then to get the phone call in the moment from the teacher saying that my son, which was across town at the time, was being acknowledged by a parent whose child had a disability because he treated their child like a person should be treated. 'Cause the child would go home and talk about my son, "Siya this and Siya that." And so anyway, I just said... I just knew then that it was bigger than us because you have to understand, the law enforcement's a culture. And so when you start creating and changing and modifying policy within any culture, you're gonna meet with, depending on the change, a certain degree of resistance, and so I was having to fight with that. Luckily for me, the sheriff was in full support of it. And so at the end of the day, that's all that matters.

[chuckle]

23:19 RK: It goes a long way, yeah.

23:21 FM: It goes a long way, he was in support of it. And it's just, it's a natural resistance associated with change and we're still working through that.

23:30 RK: Yeah. I think we're systemically seeing the calls for change and that there's a real need for us to rethink what law enforcement interaction looks like and what supports are provided. Because outside of a school, law enforcement is so often the one-stop. It's operating on an island and has to respond to mental health calls, and responds to crime, responds to any number of things, and as a result, I think there's a lot of pressure for law enforcement to be everything to everyone and I don't know that that can work. I think that's what really made this policy so strong, was when a situation is fairly and well-managed that there's more room for the school psychologist to address behavior with that student afterwards because they're not in jail, [chuckle] and that student can get the support they need, and I think we're gonna continue to see the pressure for that in the conversation of what needs to happen in communities across the country to make sure that the supports are there, so that law enforcement isn't as necessary.

24:40 FM: Yeah. And if I may add to that, we have to get the... What we created in that room on a micro level, it needs to be reproduced on a macro level when it comes to racial indifference, when it comes indifference towards disability population. You don't get just to take care of your own. It's an unfair expectation that's self-created when you believe that you're only responsible for those who exist within your own backyard. It's a self-created expectation that we have to get rid of. We bear an obligation to see ourselves in those traffic stops that have gone wrong, where the use of force has been abused, if you will. And so I take and bring... I guess bringing the conversation slightly back towards racial indifference, people know that suburban America is policed differently, we just have to stop acting like it's not. And so when you have law enforcement acting as if it's not, then that causes problems.

26:08 FM: And let's just be honest, the only difference between drug usage in suburban America and impoverished America is that you get the good cocaine in suburban America. [chuckle] The keg parties happened, the drug usage happened, opioid use has taken off, but the patrolling directives are different. I can go to the suburbs and pull people for minor traffic violations all day every day, they're not better drivers in suburban America. And so we have to focus our efforts in the areas where predominantly African-Americans live? No, that's a choice to have selective patrol directives, that's a choice. And guess what? People know that. People know that. And so that's why we have to fix that. We have to address that.

27:21 RK: Absolutely. And I think we're seeing the effects of over-policing in minority communities, and we're seeing those impacts that it's become impossible to look away, and that there is change that comes with that. I think what's... The next place of the conversation and what I'm hearing more from organizers is the call for not just less law enforcement, but the same level of supportive services. If a neighborhood is dangerous or deemed dangerous, it's not likely to have parks programs for kids, that's just how it works. And because there's no parks programs for kids, there's nothing else for kids to do. [chuckle] And the decisions that come with that may, for some, lead to other law enforcement interactions, and their neighborhood's more likely to be policed. So it's over-policing and under-serving in a lot of ways with how communities operate. So I'm glad to see those calls rising. When we say, "What's a community with a reduced law enforcement presence look like?" It looks like the suburbs, because that's what... [chuckle] We see that already, that's just... That's kind of the answer to that question. But I think it's important that we continue to have these, and it's important that the disability community know that there is a role for people with disabilities in these conversations.

29:04 FM: Sure.

29:05 RK: And there is a role for everyone to look at your life, to weigh your position, to find ways that maybe you've had it easier, maybe that you have an increased voice and an opportunity to pass the mic and raise the perspective of the folks in your community that are seeing the problems if you're not. But the work is happening, the work is needed, vitally important. So glad that you share this conversation with me and that you are doing the good work that you're doing at Richland County, and Able South Carolina will continue to participate in the conversation and further the real human-hood of every person as it should be taken. We have to see past indifference and use our role to make the systems better.

30:10 Chris: Well, that was an incredible interview. Thank you, Robbie, and thank you First Sergeant McDaniels. I think the moment that stood out to me was the story that he told about First Sergeant McDaniels, when he talked about his son's teacher. So often people don't understand the disability experience unless you have a close family member with a disability or someone that you live with. Those that do, those people that do live with those individuals, they're the ones that usually end up becoming what we call the champions of people with disabilities. And I think it's because those people have the chance to see that person as a person and more than just a disability, they get to really experience what that life is like and understand that this is just a person just like me. And I feel like that same thing basically happened here in that when First Sergeant McDaniel's son, he basically taught him a lesson about how we should treat other people, and not just people with disabilities, but everyone and I think that speaks to this entire conversation that we've been having about racial disparities in America. And if we treat each other as equals and with genuine care and respect, then it just makes everyone's life better.

31:32 Chris: Okay, everyone, I think it's time for our big announcement. I know I've been putting it off long enough. I'm just gonna go ahead and say, I'm gonna let everyone know, I don't really care what the producers say, it's time, we're gonna say it. And the big announcement is... Drum roll, please.

[vocalization]

31:55 Chris: This is the final episode of The Access Aisle. That's right. In January 2021, we will re-emerge as the Stop the Shush Podcast with Sparrow and The Bear. So yes, this is our last episode of The Access Aisle. We're gonna be transitioning to a new format. I will be your new host, Sparrow, and I am bringing along a friend. Allow me to introduce your new co-host, The Bear.

32:29 Bauer: Hello, hello. Thank you, Chris. Yes, I am The Bear, also known as Bauer. I will answer to either name. I'm really excited to be with you, Chris. I'm really excited to start this new adventure with you. So yeah, very exciting things.

32:44 Chris: Yes, yes, they are very exciting things. We are going to be starting a new format, we're gonna be changing things around a little bit. The podcast is not gonna sound like it used to sound, so new year, new sound. Bauer, tell me, what are some things that you're excited about with this new podcast?

33:04 Bauer: I think the main thing I'm really excited about is all the different conversations we're gonna have, and I'm not just talking about with you and me, but the conversations we're gonna have with our listeners. We're gonna make this interactive, we're gonna ask for feedback from y'all. But having conversations about topics that we don't generally talk about, things that we push under the rug, things that we shush. Deciding to not do that, deciding to take all of those taboo topics and bring them out into the open, so that we can make the change that we need to see in our society, I think is a really important and a really exciting thing.

33:42 Chris: So how worried are you that we're going to get in trouble at some point with something that we say? [laughter]

33:48 Bauer: I'm usually a goody-two-shoes, so I usually err on the side of not getting in trouble, or trying to not get in trouble, so we'll see how exciting it actually does get. [chuckle] But yeah, no, I think pushing the boundaries just a little bit is not a bad thing within decency's sake.

[chuckle]

34:10 Chris: Yeah, we're gonna have some good... We're gonna have a good time, we're gonna make this thing fun, we're gonna make it lively, we're gonna bring in some good banter, we're gonna have some fun guests, and we're gonna talk about these things that we normally don't get to talk about. And so we want it to be focused on the consumer, we want it to be focused on people out there with disabilities, and getting a chance to give you a voice and to bring light to topics that you don't normally get to talk about. So that is our goal, that is what we look forward to. So Bauer, Bear, we will see you and we will see the rest of the crew in January 2021, and we look forward to it, and watch out for the Stop the Shush Podcast with Sparrow and The Bear.

35:03 Bauer: Thanks, Sparrow. See you soon.

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View Details

The summer of 2020 was a time when America experienced a heightened awareness of the racial inequities in policing in our country due to the high profile murders of several Black Americans including George Floyd and Breonna Taylor. Though racial inequities in policing have always existed, serious conversations about the matter exploded into the public discourse.

In this episode of the Access Aisle we talk with someone who experiences both sides of the issue, First Sgt. Walter Shawn McDaniel. First Sgt. McDaniel is a 25 year officer with the Richland County Sheriff’s office and a Black American. He shares his unique perspective about healing the racial divide in our country as well as how the police and disadvantaged communities can work together to earn trust back and develop more of an understanding of each other.

Disclaimer

Episode Transcript:

00:14 Chris Sparrow: It has been 11,059 days since the ADA was passed, and you are parked in the Access Aisle.

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00:30 CS: I'd like to introduce myself. My name is Chris Sparrow, but you can just call me Sparrow, and I am your new host of The Access Aisle. Today, we have an incredible interview with Robbie Cop and First Sergeant Walter Shawn McDaniel, and stay tuned 'cause afterwards, we got some exciting news for you. So Robbie, go ahead and take us away.

00:56 Robbie Kopp: Today on the Access Aisle, I'm joined by my guest, Walter Shawn McDaniel. He is currently a First Sergeant with Richland County Sheriff's office, and we have had the good fortune of being able to work together on some law enforcement and disability interaction policy with Richland County Sheriff's Department a few years ago. So welcome. Good to see you over Zoom, Shawn.

01:23 Walter Shawn McDaniel: Good to be here, thank you for having me.

01:25 RK: Absolutely, thank you for taking this time. We're really living in a unique moment right now as we see the interactions of law enforcement under increased scrutiny, as we see lives lost like George Floyd and Breonna Taylor and Ahmaud Arbery, and many, many more, presumably as a result of bias from law enforcement and risk to folks of color and people with disabilities. And what we're hoping to cover a little bit is a time to hear your perspective from law enforcement and as a person who's Black, and hear the interaction of where things are now and where things really could be and should be with acknowledging difference, and also making sure that we're looking out for each other and protecting each other. So with that, I'm gonna open up pretty broadly and let you share a little bit, what's the perspective that you've gotten? What are some of the things that you've been seeing inside law enforcement as we navigate and have a larger conversation around race?

02:35 WM: Sure. So, the narrative of racial indifference is not a new narrative, to be honest with you, it is not a new phenomenon that we're just discovering. And so I get a chance to speak from both perspectives, if you will, of 24 years of experience in law enforcement, working in different areas such as major crimes, armed robbery, aggravated assaults. You get a chance to see society from a different space, if you will, and trying to understand human behavior. It forces you to rely on instinct and to rely on your training, which is a key factor that hopefully this conversation will lead in that direction, 'cause at the end of the day, it's broken on both sides of the fence, and it's time that we each take ownership of that. To include citizens who are fully aware of racial indifference, gender indifference, socioeconomic indifference, and due to their silence, they've contributed to the protracted conflict associated with indifference. And so we need to do a better job at understanding what our contribution is, and so I look forward to the conversation. It's a difficult conversation to have. And so, of course, we have to be willing to hold it. We have to be willing to mutually learn on both sides of the fence.

04:06 WM: We have to be willing to allow space for emotion. That's crucial. If you don't allow space for emotion, please know that emotion will be heard one way or another. And when you're not allowing that space, you're almost forcing the hand of those individuals who feel slighted. They know something's wrong, they can't put their finger on it, and that's what we're experiencing. We're experiencing whites in general that typically can't seem to separate themselves from this statement like, "I don't see color." So we clearly know that that's not true, and I think I know what they're trying to say in terms of that, like, "I don't see color." Well, clearly, to not see color is equivalent to, if someone's in a wheelchair, for you to say, "I don't see anyone that's handicapped or anyone that has a disability." Right? So that's just unrealistic on a very basic fundamental level. And although you may have good intentions, it's actually offensive to say that. So if you don't see color, then that means that you don't see me, 'cause that my color is part of me.

05:24 WM: And so I think one of the things I've found throughout my walk within law enforcement, and as a Black man, is that many times, we pick and choose those battles in which we're willing to fight, and we pick and choose those battles based on our comfort zone and based on the familiarity factor, to not be willing to extend ourselves beyond that. I think that this is the end result of it. We've been trained to believe that we should focus on the differences. Let's just be honest, if you ask the average individual who's white in this country, if they would swap out their position for the position of anyone that's African-American in this country, very few of them would, because they can't put their finger on what's wrong, but they really... They know something is different. We can't suffer from what is known as the theory of attribution, we attribute certain behaviors to certain people or certain groups, and apply these parameters to them, such as, "Well, they're only like that because their home was broken." And we know that there are broken homes in the white culture and in the African-American culture and in every culture, there are broken homes. And so that theory of attribution doesn't really apply.

06:46 WM: So the position of a lot of whites today, "Well, slavery is over. Well, I never owned any slaves and you were never a slave, and so why are we still holding that conversation?" They think that by discussing it, we're perpetuating the old narrative. Well, I wanna say this to you, to those individuals, number one is, it's offensive. To say that the Homestead Act had nothing to do with the current socioeconomic positioning of whites today is equivalent to saying that the original creators of the phone had nothing to do with where we are with the phone and its usage today. And you can't separate the two. And so you can apply that to everything and anything. Our systems that are in place, that there is systematic indifference, there is systematic racial indifference, that prevent access to opportunity, that it creates the presence of demoralizing stereotypes for certain people. And again, not just racially driven, but also socioeconomic indifference. We look down on those that don't have what we have, right? And so we have to be honest about that. Everyone knows the one set of cousins that may not have what you have, but yet we tend to think that that's okay, and to be solid.

08:15 WM: And lastly, I think we all need to do a better job at realizing this one fact. Everyone is responsible for fixing and leaving this world better than how we found it. You don't get to just do it for your own race, you don't get just to stand by and... Or your own gender, or your own socioeconomic class, you don't get to do that, you don't get to do that. And so if there's a conflict, if there's an existing problem, you bear an obligation to take ownership of what your contribution is, even if it's silence. If you've utilized silence when you heard the N-word and you said nothing, then that's your contribution. If you recognize that there were issues in military, law enforcement, whatever field you're in, as it relates to gender or race, and you said nothing, well, that's your contribution. I'll end on that note, and I know I said a lot, but...

09:16 RK: Yeah. And I think that's so important that everyone take the time to find their role in the indifference, the racism, the ableism, whatever the -ism is, and do the work that's necessary to address that, not make it somebody else's problem, and not to make somebody else make you feel better or make you do... Or teach you something, but to really educate yourself and find your role and find ways to do better and elevate people as people and make sure that the footing is at least equal because of the systemic racism, ableism, transphobia... Pick a group. Marginalized populations have been marginalized, have been put down to a place where in order to reach equality, we have to address all of these past inequalities, and acknowledge them and own them and move past them. And I think that that's the challenge. And I think what has been giving me hope in my own work is seeing how communities are coming together to a point to acknowledge each other and acknowledge where each group is coming from.

10:35 RK: With violence and police brutality in the cases that we've heard, I think they have stirred something in everyone. In being able to see another human looking back at you, in the case of George Floyd, and hear the story of Breonna Taylor and Ahmaud Arbery, we have the same stories or... No story is the same, but similar stories from inside the disability community, from people of color and white people with disabilities, too, that are being targeted because of that difference or have received a death sentence for something incredibly minor that should not have happened that way, with cases like Maha Chaudhry and Laquan McDonald, and making sure that the stories have to be told, and we have to do the uncomfortable work of acknowledging how these biases really wreak havoc across systems. I wonder if you'll comment a little bit, I think there's a lot of terms that people are using in this space with these conversations, tell our listeners a little bit around your use of indifference as kind of a term that defines what's at odds in society right now.

11:48 WM: Sure. So when I use the term racial indifference or indifference as a general application, I am talking about that when indifference is fueled by implicit biases. And not knowing what those implicit biases are can oftentimes manifest itself in the form of indifference. And you end up utilizing whatever position you're in, whether you're an employer seeking to hire an interviewee, and you begin to project your implicit bias, and it evolves into the form of indifference. And next thing you know, that individual is not graded or considered to the same degree as someone else that doesn't trigger your implicit bias. So I think that's in law enforcement. And first of all, training in law enforcement has got... We can talk about that again. Training has gotta shift in law enforcement with respect to measurable tools that are transparent in the form of pre and post-exams during training to give us some sense of measurement with respect to proficiency, and to see how agencies are scoring in the areas of cultural diversity, implicit bias training, adverse childhood experiences, and to be able to grade an agency.

13:28 WM: How comfortable would that be to know that your loved one is traveling through a small town in Alabama, and you discover that they are being pulled over in a traffic stop? And in one quick search, you'll be able to find that they scored a... They're at the 92 percentile rate with respect to proficiency in the areas of cultural diversity, so you know that they're trained on it. That just creates discomfort that's needed throughout the country right now with respect to trusting law enforcement. So when I talk about indifference, I'm talking about the usage of implicit biases through the authoritative positioning of one's privilege or a job or status. That's what I'm talking about. And that also comes in the form of gender indifference. Oftentimes, whilst you're hanging around the cooler with the fellas, and a female employee will walk by and an inappropriate comment is made and you said nothing, you did nothing, you didn't... You're just as guilty as the individual who made the comment.

14:38 WM: And so yeah, that's what I mean by racial indifference. So when law enforcement began and when they start utilizing their position to effectively exercise their implicit biases. And they need to know what those are. We need to... And give them an opportunity to be coached through it. That's important, that's so important. You're the sum of all of your experiences, Robbie, and if you're a white male that never had to be around African-Americans before and now you're a police officer, and as a result of six months' worth of training, you're now given the authority to engage and interact with people who culturally, you're sincerely ignorant with in knowing how to deal with them, well, we need to know where your limitations are so that we can train you through that. We need for you to identify what your implicit biases are. We need for that officer to see the need to move beyond their comfort zones and to seek understanding concerning other cultures, to include those, the culture of disabilities. We're not trained in that area like we should be across the board.

15:53 RK: Yeah, and I think that that's a good bit of what we're hearing nationally around conversations that are termed "defund the police", and often refer to restructuring. How do we rethink policing? How do we give cops the tools that they would need to do their everyday work? Is that a different title? I think we see a lot of community work that falls in something that is kind of an emergency category that ends up being a law enforcement issue. If it's not fire, then it's law enforcement in a lot of cases. So I think that there's a lot of expectations from law enforcement to be able to interact with every last person, and that there's a lot of expectation that that situation may be inherently dangerous. And that's not always the case. So I'm curious, I think we've seen training as a helpful tool in that I think that there have been some best practices put forth around training. And I really like the idea of having an attributable number and the public being able to see this law enforcement officer, this department ranks highly or proficiently very well in that cultural awareness and sensitivity.

17:13 WM: So gone are the days, Robbie, of hoping that they actually provide, and hoping that the officers who are being trained internalize the training, and then hoping that they know how to apply it and allow it to become part of their daily routine. We can not only just rely on that. Respectfully, in good faith, we're not training on those areas, and we need to do a better job at that. And then we need to be able to measure it and hold them accountable for understanding and applying that in which that they learned. And we're not doing that, we're not... We say that we are. And I think when you open up the training curriculum to the public, I think that that level of transparency forces law enforcement to make some pretty sound decisions in how they administer training and how they measure it. And what's equally important is the need to go back and train where there's a void, the need to go back and... If someone scores a 74 in the area of implicit bias or cultural diversity, then we don't need to hope that they'll eventually get it. We need to know that there's a practice, a methodology, if you will, that's in place that will ensure that that particular individual is going to get advanced training, and that particular individual is going to be expected to meet a certain standard.

18:54 WM: Right now, with our department, if you fail our PT test on the third try, you are terminated. You are fired. And so with the same sense of urgency and the same level of importance that we apply to that aspect of our training. We need to apply to the areas of being disability-informed, being trauma-informed, being informed as it relates to implicit biases, being informed as it relates to adverse childhood experiences, and stop riding the boat of, "Well, that was then, this is now." Right? So I utilize the, again, the analogy of a track race. If we're all in the same race, but there are two starting guns, one allows one group of individuals to get ahead and to go two and three laps ahead, and then the other gun is for another group of individuals to, "Pow! Now you go." And then we're looking at them saying, "Catch up." It's just an unrealistic way of looking at how we have evolved as a society in this country.

20:21 WM: One of the biggest gripes for a lot of whites is those who are... I guess the best way to say it is this, Africans were not brought here to seek the same, they were brought here as property. And so now, when slavery was abolished, now you have to do... What do you do with these individuals? Now, they're just as educated, now they have access to books, now... That was the reason why. If you were caught with a book in your hand that you can suffer severe punishment. That was the reason, because of what we're experiencing now. And we're not going anywhere, to be honest with you. We're gonna live together, we're gonna work together, we're gonna move past what Martin Luther King coined as sincere ignorance and conscientious stupidity. And we're going to acknowledge how we've all created this problem, how we're all complicit in dealing with this cultural cancer. There is one overall culture, and that is the human culture, and we all share in that culture. We're forced to engage with each other. It's just, we have to stop falling subject to what Antonio Gramsci identified as hegemony and false consciousness, and realize that we're all in the hamster cage [chuckle] trying to figure out who's gonna get on the wheel next.

21:58 RK: Yeah, for sure. I think in my observation, there's just been so much division, and there's kind of this attempt to draw lines between groups of people, while there are systemic issues, while there are institutions that have been built on premises of racism or ableism. The lines that we draw are the biggest part of what separates, is that we have this opportunity to be human and to look out for each other and to care and to find your role in other people's struggle, and make sure that we're owning that role and covering that role and erasing the lines where they need to be gone and helping each other up where that's needed.

22:49 RK: And I think that that's what's really interesting in seeing a lot of the work that's taking place in communities across the country following the death of George Floyd, Breonna Taylor and Ahmaud Arbery, is that, I think a lot of other rights groups, and again, that this other mentality is probably off, [chuckle] but other marginalized groups are finding that same thread of indifference, or are finding that when there's one voice of rights, of human rights, that all boats can be lifted. We have cases of individuals with disabilities that are Black and can see that outcomes are worse, whether it's an academic outcome, employment outcome, earnings outcomes, or arrest rates. We see that where groups are marginalized and where they identify with multiple marginalized groups, there's even more barriers, and that that can be especially challenging.

23:58 CS: Thank you, guys, for such an eye-opening interview. I learned a lot there that I'd never really thought about before, so thank you. Part two of the interview is gonna be coming up next month for the Access Aisle. And like I told you before, we got some big news, so there's gonna be some big changes happening to the Access Aisle in the New Year, and we're really excited about it. We think you guys are really gonna love it and you're really gonna appreciate what we're doing here. So please stay tuned for next month, for part two of the Access Aisle interview with Robbie Cop and First Sergeant Walter Shawn McDaniel, and then we're gonna give you a little bit more information coming up in the next episode. So stay tuned for episode two.

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In this episode of the Access Aisle, Able SC's Advocacy Coordinator Tiffany Namey, teams up with the League of Women Voters of South Carolina's Lynn Teague to share the specifics of how to participate in real-life advocacy. In this primer episode, the co-hosts share the many outlets for making your voice heard to decision-makers and how to make your message clear and effective.

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Episode Transcript:

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00:14 Tiffany Namey: It has been 10,799 days since the ADA was passed, and you are parked in The Access Aisle.

[music]

00:34 TN: My name is Tiffany Namey and I will be your host for today's episode. We have a guest today, Ms. Lynn Teague, joining us from the League of Women Voters of South Carolina. For those who have not met me yet, I am Able South Carolina's new advocacy coordinator. That allows me to serve as an advocate for persons with disabilities and help create a community that advocates for disability rights, both here within our organization and outside in the community at large.

01:05 TN: We are going to start out for the first half of this podcast and talk about the basics of advocacy, what it is, why you do it, and very lightly touch on tips of how you do it. In the second half of the podcast, we are going to talk about how to find out about issues you may wanna advocate for in the disability community and getting involved in social justice organizations. So Lynn, can you tell us briefly, what is the League of Women Voters and what is your role?

01:34 Lynn Teague: The League of Women Voters is an organization of women and men, 100 years old. We came out of the Women's Suffrage Movement, and once women had the right to vote, it was felt that it was important that women help others register and vote and also be educated voters, informed voters.

01:56 LT: So also, we have an advocacy arm. So we are basically involved in both voter services, which is not my department of the league, and advocacy, which is my area in the league. I'm the vice president for issues and action for the South Carolina League and that translates among other things, to being lobbyists at the State House for the league.

02:20 TN: Wonderful. So let's get started on today's topic, "Advocacy." Advocacy is central to the Center for Independent Living's mission and that's what Able South Carolina is. There are a couple of kinds of advocacy. Today we are talking about systems advocacy, which is a fancy way of saying "advocacy in social or political change."

02:45 TN: And specifically today, we are talking about advocacy for disability rights, which is done when we work to create positive and meaningful change to bring awareness to barriers for persons with disabilities. So those are barriers that people with disabilities face in the community and we work to remove those barriers, but you can be an advocate for any kind of injustice you see. So just because you're a person with a disability, it doesn't mean you have to advocate for disability rights issues. Lynn, how do you define being an advocate?

03:26 LT: For me, an advocate is any citizen who wants to make their voice heard on their own behalf or on behalf of an organization that they're part of. You can either speak simply for yourself or you can become involved in an organization addressing a particular area. The League of Women Voters for example, has a very broad area of interest, but we focus very much on the government accountability and transparency issues and what we fondly refer to as "Making democracy work." So, an advocate is someone who speaks up especially to public officials about what they... The needs they see and the kind of solutions they envision.

04:11 TN: That is something that I grew up being told. My parents always taught me that if I see something that needs to be fixed in the world, you can't rely on anyone else to say or do anything about it but you. And I think a lot of people, especially people who come from minorities like the disability population, wonder if what they do really makes a difference or if their voice really counts. So if I were to ask you, "Why should I be involved in the political process?" What would you say?

04:49 LT: I think any time you don't speak for yourself, you're letting others speak for you, and they may not have your full perspective on the issues that concern you. I'm very glad that you mentioned "systems advocacy", because very often people will look at a problem for the disability community, I would imagine something like, "That sidewalk's inaccessible." But it's very important to ask, "What is the reason that this city doesn't have a rule on how these things are done, so that I don't just get this sidewalk fixed, but I look at how all sidewalks are designed for people with disabilities."

05:33 LT: So, I think it's very it's very important to take that broad view and to make... You are the person who knows what you've encountered in life and what your issues have been and what kind of solutions have worked for you. So, I think it's very important that we realize too that public officials expect to hear from you. You are not out of line somehow by calling your senator. [chuckle]

05:53 TN: Right.

05:53 LT: You are doing what any responsible citizen is entitled to do.

05:58 TN: I looked up some quotes on advocacy and one of our founding fathers in the disability rights movement is a gentleman named Ed Roberts. And he said, "The greatest lesson of the Civil Rights Movement is that the moment you let others speak for you, you lose." And I think that's a general... What you were saying.

06:22 LT: Yes, yes.

06:24 TN: And I think another thing to remember is, is that the people who are speaking are the people who are making the rules, and we hear a lot about, "Oh, the system is run by old white men." Or, "Oh, this system is run by this group or that group." But there is a serious lack of representation of persons with disabilities out there making laws and making rules, so we really do need people with disabilities to be involved.

06:56 LT: Yes, run for office. Don't just vote. Don't just talk to your representatives, run for office.

07:03 TN: Yeah. Or at least get involved. At least make sure you start out by talking to your legislators, vote and then run for office.

07:13 LT: And become involved in organizations whether it's Able or the League of Women Voters or whatever, that will help you learn how to advocate.

07:20 TN: A problem. I see a lot is people who are new to advocacy go to the wrong legislator for the right reason, can you tell us how to know if an issue is a federal issue, meaning you need to go to a congressman or a senator? Or a state issue, meaning you need to go to a state senator, or a state house representative? Or a municipal issue, so a city issue or a county issue?

07:55 LT: Well, sometimes it can be multiples, but we won't get into that [chuckle] today, 'cause you just need to have an entry point in the system. And in fact, determining the right entry point is crucial. And I use the example of a dear friend of mine who went to her state senator about a tree that was blocking a right-of-way in the city of Columbia. One thing that... One way to find out is to call somebody in you'll find... They'll tell you, "I don't handle that, so-and-so does." But for one thing, if you wanna find out who your representatives are and who your public officials are, if you can go online, scstatehouse.gov, if you put in your address, it will tell you who your senator, your congressman, your state senator, or your state house of representatives member.

08:43 TN: So that was S-C...

08:44 LT: Statehouse.gov.

08:46 TN: Scstatehouse.gov.

08:48 LT: Right. And county and city governments also have websites that will provide information. My experience has been that most of the people who handle public contact for state government, for example, are extremely accommodating and helpful. They will tell you if you're in the right place, [chuckle] but you need to figure out not only is it federal, state, city, or county, but is it executive, legislative or judicial?

09:17 TN: So executive means...

09:19 LT: Executive means the people who actually carry out the daily work of government. So if you have a tree that's fallen on a utility line, probably your city right-of-way people can contact the utility company and help do all of that and get it straightened out. If you, however, want to change how utility lines are managed in your city, then you probably wanna talk to your city council in your legislative branch. Congress is a legislative branch, the state house and senator, legislative, but county and city council are also legislative. They make the rules. Are you concerned about something that's how the rules are implemented? Or are you concerned about something that is how the rules are written? And so there you have that distinction. Judicial of course, that's when you come to a situation in which it has to be resolved by that third party, the judicial branch.

10:13 TN: That's if the rules that are written are wrong?

10:17 LT: Right.

10:17 TN: Yeah.

10:18 LT: And you can't get it fixed otherwise.

10:19 TN: Exactly.

10:20 LT: But very often you'll find that it's oversight. Years ago, my husband counseled me when I was upset about something to remember that usually ignorance is a better explanation than somebody actually having evil intentions.

10:36 TN: Right.

10:37 LT: So consider that they just haven't heard your voice yet and need to.

10:40 TN: Which is why we need more representation, we need more people being advocates.

10:45 LT: Right.

10:46 TN: So we talked about how to find out how to contact our elected officials, so we know what our issues are, we know how to contact our elected officials, we know who to go to, what do we do now?

11:03 LT: There are many ways to make your voice heard. There are public hearings that are organized for many issues, and I will say that these are indispensable, and at the same time, they're not enough, because they tend to be fairly superficial ways to get input. When you write to your elected officials, or for that matter, to a regulatory body like the Public Service Commission that might be handling how a utility issue is resolved, when you write to them, that's another way to get your voice heard. I do not encourage email as a usual way of communicating with legislators. It may work for some kinds of government offices, but legislators tend to be, these days, overwhelmed by bulk emails for their public email addresses. So you may not be heard if you just email, but phone calls tend to be effective. Often you'll speak to a staff member not to the actual public official, that's fine. Staff members do a lot of the work. They assemble a lot of the information, they do a lot of the research. Sometimes, they're closer to an issue than the actual elected official is. But if you call your elected official, you can discuss either with the official or with a staff member what your concerns are, and what you want.

12:22 TN: But an email is better than nothing for people who aren't able to physically write a postcard or a letter.

12:30 LT: And so if you do that, one little technical hint I would make is put in somewhere in the subject line that you're a constituent, concerned constituent on disability issue something like that, so they know it's not just one of thousands of emails from some made national organization.

12:34 TN: And if you can't go to the public forum, you can usually still make public comment on a public forum.

12:34 LT: Yes.

12:57 TN: If there's a county commission meeting or there's a listening session that's somebody's having, you can usually make a public comment even if you can't go. Most of the time, those people have public comment, is that correct?

13:11 LT: That's correct. And online official comment mechanisms are different from just bulk email. They are effective, they are effective to do that. Now, another thing though that I think people should be aware of is, usually online petitions are not tremendously effective and they're usually done not so much to affect the official, as for people who are interested and the organizations that are interested in the issue, to get your contact information. Who is it that's our audience? And that's fine if you want to be identified to that organization.

13:43 TN: Well, and joining social organizations is another good way that you can find out more about different ways to represent your values.

13:50 LT: Absolutely, because the league for instance, has 100 years of experience in how we advocate and we're very careful about how we analyze our issues, study our issues. I'm sure Able also is very careful about positions it takes and has established ways of communicating. And so when you're starting, it's especially useful to be part of an organization that will help you find your feet on how to handle it.

14:23 TN: So if you would like to feel confident and empowered to speak with your representatives, I'm gonna give a little advertisement here. We will be holding a training on the finer points of self-advocacy and talking points, how to develop an elevator pitch, making an ask, and all the things in between. This is a great way to get ready to participate in Advocacy Day for Access into Independence at the South Carolina State House, which will be happening on April 1st at the South Carolina state capital. So if you are interested in learning more about how to be an advocate, you have a great personality and you care about access and disability rights, you can sign up today. You can find out more information on the dates and times on Able's Facebook, Twitter, shoot us an email or just give us a call.

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15:33 TN: So once again, I am Tiffany Namey, I am advocacy coordinator for Able South Carolina, and I am here with my guest, Lynn Teague, from the League of Women Voters, and you are parked in The Access Aisle.

15:45 TN: We just talked about what advocacy is, why people should advocate for an issue, and how to contact a legislator. But I wanna take a break for just a second and talk about how we ended up here.

15:58 TN: So for me, I grew up in a very politically active family. My father was very involved in Democratic politics, my grandparents were very involved in Republican politics, and my uncle actually still is very involved in judicial races.

16:15 TN: So, I considered myself a fairly educated person when it came to current events, but I was suffering from a pretty bad bout of depression. And as a non-driver, it was really hard to fight at that time because I couldn't get out of my house.

16:36 TN: And so, my dad decided that he needed to take me to this debate watch party for Barack Obama and Mitt Romney. It was their first debate and it was at a local restaurant, and everyone seemed to be laughing at the same things and booing at the same things, and I had a panic attack.

17:00 TN: And so I walked outside and I was leaning against the wall and I was trying to self-soothe, and this man walked up to me and he was carrying campaign signs, he was wearing this Armani suit and he just started talking to me. And I wasn't... I didn't think he was a serial killer, he didn't... And you were raised, if somebody's talking to you and they're not dangerous, you speak back, that's just manners.

17:27 TN: And so before you knew it, I started feeling better. And he looked at me and he said, "You're too smart to be the princess in the tower." I'll never forget that sentence.

[chuckle]

17:40 TN: And I said, "Okay." And he said, "You're gonna come and work on my campaign." And I said, "Well, there are two problems with that. One, I already told you I have epilepsy, I can't drive. And the other is, I don't know what a property appraiser does." That's what he was running for.

17:58 TN: And so he said, "Well, I'm gonna send you a cab every day. And if you wanna leave, you just call it and it'll drive you home, I'll pay for it. And you'll learn what a property appraiser does, and while you're learning about it, you'll learn about my opponent. And if you don't think I'm the best person for the job, stop coming." Well, you can't really say no to that. It kind of sucks up all your arguments, right?

18:22 TN: So I started working for him and before you knew it, other people wanted me to start working for them and started gathering petitions and volunteering on other campaigns. And then I started working in the disability rights movement and now here I am. And so, that's how I got involved in advocacy.

18:41 TN: I love it, I love what I do and I love the opportunity that I have to be here. I feel like I have a purpose. And through all of it, I actually decided to go back to school, which I never thought I would do, and I actually got a degree in public administration. So, I have a degree in doing this.

[chuckle]

19:08 TN: Which is just amazing. [chuckle] 'Cause as a person with a disability, we're told a lot of times all the things that we can't do, and there were people telling me all the things that I could do. And now, I wanna tell everybody what they can do too. And I think that's really important that we need to share that with people, we need to be going around telling each other what we can do. And that's my advocacy mission. So Lynn, how did you get involved in the League of Women Voters?

19:44 LT: Well, the short answer is a friend caught me at a meeting and said, "You belong in the League of Women Voters."

[laughter]

19:52 LT: The longer answer is that from childhood, there have been issues around South Carolina that I really felt needed addressing and many of them have to do with social justice and how the system works here. And I was gone for many years, my career took me to Arizona as an archaeologist for much of my life.

20:13 TN: That's a cool career.

20:15 LT: Well, some days it was, some days it's not so much.

[laughter]

20:20 LT: But when I retired, my husband and I both retired, and we moved back here, 'cause we love South Carolina, we really love its people and the place. And so for a while, we were very occupied with family matters, but when that started to be less compelling, we were looking for other things. My husband got involved in art which many people like to do when they retire, and I got involved with the League of Women Voters, and it turned out to be the perfect home for me, because it's issue-oriented not partisan, very non-partisan. We are extremely careful about that, and issues are what propelled me. Now, I absolutely respect people who are very engaged with partisan politics, but it's different from what suits me personally.

21:09 LT: And I would also say for anybody who's trying to make their own voice heard, do not make assumptions about partisan divides. You will find people in both parties that will listen to you and be helpful. You will find people in both parties who will not. You need to keep an open mind, and you need to always remember that somebody who may be on your side on one thing may not be on your side on everything, but that's okay. You don't have to agree with everybody on everything. So that's... I found the League of Women Voters, and it was the right place for me, because that is an approach that suits me.

21:48 TN: You're obviously from South Carolina. South Carolina is something that you're passionate about being a resident here. I just moved here from Florida, can you tell me and our listeners where we can learn more about political advocacy and grassroots involvement, both in the Columbia area and in general. Obviously, they can come to League Women Voters meetings, they can get involved in Able's Advocacy Day. What are some other resources for them?

22:24 LT: Well, once you get involved with any organization, or even just visit the meetings of any organization, you'll run into people like myself who work with a wide variety of organizations. For instance, here I am talking to Able.

22:38 TN: Right.

22:38 LT: And so you can go to people who are involved in advocacy and say, "My main passion is this, do you know of an organization that's focused on what I want to work on?" And those people who are already engaged are gonna be your easiest route, and then can tell you, "Yeah, you know, Able works on what you are concerned about. AARP is very active in the area you care about. Here are the people you need to talk to." So I would strongly recommend going to meetings for a few likely organizations, talking to people, and starting to refine your idea of what you wanna work on, 'cause you can't do everything. Nobody can do everything. What is it that you really are passionate enough about that it will carry you through? And by passionate, I mean deep caring. I don't mean you have to be hyper-emotional.

[laughter]

23:34 LT: And I would just say that when you're talking to public officials, they get a lot of very emotional appeals. Very often, what will actually motivate them is when you can give them some solid facts, some substance. You say, "I know what I'm talking about." And if you're a part of an organization that can help you know what you're talking about, have the information you need. That gives you a leg up. You don't have to re-invent the wheel.

24:02 TN: Yeah. And that's one of the tips we're gonna give you at our advocacy class is we tell people to make sure you bring a folder, and we try to encourage you to bring two, one for you and one for the legislator. That way if the legislator is looking at it, you have something to reference for yourself. But that folder should have some hard information in it about what you're talking about. So some statistics and maybe an op-ed which is an opinion piece from a newspaper or a study from a university, something that can back up what you're saying. Maybe going back to her sidewalk example, if you have an article about where somebody got hit by a car on your street, because they didn't... You don't have a sidewalk, a study about how pedestrian fatalities are reduced when you have sidewalks in subdivisions.

25:15 TN: When you have those kinds of information, and then you're able to put your contact information and leave that with the legislator and then the legislator goes, "Oh, do you have one for my friend?" And you say, "Yes, I do. You can have mine as well." And so that way, you have that hard information, and you're not just going, "This is what I want, because I want it," but you can go, "This is what we need as a community, because we need it." And so we're gonna show you in our advocacy class here how to put that together, how to assemble it, what it looks like.

25:58 TN: And if you're looking for resources to get involved in disability advocacy in particular, I wanna give a few shout-outs. You can go to www.unlockingbarriers-sc.org. You can go to https://www.facebook.com/SCAccessIndependence/. You can go to ablesouthcarolina.org. You can go to AAPD.org, that's the American Association of People with Disabilities. Go ncil.org, that is the National Center for Independent Living. #CripTheVote on Twitter is a non-partisan social media community of people with disabilities who talk about politics. That's really great to watch if you're watching the debates online right now, you can get a cross-disability platform view of what's happening in politics. It's absolutely fabulous.

27:09 TN: And I encourage you to check out organizations with your specific disability or disabilities, but make sure that they are run by persons with disabilities in leadership roles with empowerment of persons with disabilities in mind. The Center for Independent Living's model is a cross-disability model run by people with disabilities for people with disabilities. You wanna make sure you're not looking at organizations that are run by people without disabilities for people with disabilities, 'cause they're not always empowerment oriented. And you may wanna also check out intersectional organizations, ones that are specific to other demographic groups that you might be a part of.

28:02 TN: So no matter where your passions are, it is important to get involved. When the voice of the disability community is at the table, there are benefits to accessibility, diversity, and inclusion across the board. The disability community in South Carolina needs you to speak up, and our intersectional rights organizations need you too.

28:22 TN: So I wanna talk a little bit about what it feels like to be involved and be a self-advocate and set some reasonable expectations and goals. So let's start off talking about some of those reasonable expectations. We don't always get what we want right off the bat, and that can feel hard. People who feel differently than us aren't always nice either. I know we talked about how sometimes people with political opinions can be accessible, and they can be easy to talk to, but sometimes they're not [chuckle] so is that ever hard on you? I know, before we started the podcast, we were talking about people who changed the schedule at the last minute.

29:20 LT: Right.

29:23 TN: So let's talk a little bit about what it can really be like.

29:26 LT: Okay. Well, first of all, most public officials and especially those who are elected public officials, try to be pretty polite to the public, and you need to distinguish, first of all, between whether somebody's not being nice to you, and whether somebody's just disagreeing or saying that they can't do what you want. In my experience, you are much better off dealing with somebody who's honest about what they will and can do for you than you are somebody who's going to just smooze you and tell you everything will be fine, and they forget about it the minute you walk out the door.

30:04 TN: That's a very good point.

30:06 LT: And so one of my earliest experiences was sitting down with Senator Larry Martin who was then chair of Senate Judiciary in South Carolina, and I told him what I wanted, and he smiled and he said, "I can't possibly do that for you."

[chuckle]

30:24 LT: And I quickly learned that Senator Martin was one of those people who would tell you the truth, and I learned that there are other people that you go to and they, "Oh, that sounds really good. Yeah, I'm really interested in that." And then they'd never follow up. So respect those people who will tell you the truth and that at least let you know where you are [chuckle] and plan accordingly. I have found that it's not that often that people are genuinely rude or unpleasant when you're doing advocacy, even the side from the elected officials. It's really pretty uncommon in South Carolina especially where people value manners. I did a little bit work with the legislature in Arizona, and I will say that there were legislators there who would really stand out like a sore thumb here for their rudeness, but...

31:16 TN: It can get pretty brutal in Florida.

31:18 LT: Yeah.

[laughter]

31:20 LT: But you need to talk, not only with your public officials, but with people who have an interest in your issue that may be opposed to your interest, because if you can work things out with them, if you can find a compromise, then you go to the official with, "Here, we've been talking, and we have something we think, it maybe isn't perfect for either of us, but it works better than what we have."

31:44 TN: Right.

31:44 LT: That public official is going to really respect and appreciate that you've come part of the way to the solution, and those people who disagree with you, again, it's a disagreement on an issue, it doesn't mean that they're bad people.

32:00 TN: No.

32:02 LT: Now and then, it does.

[laughter]

32:05 LT: But mostly the... Mostly, it simply means they have different priorities, or they have a different background, different information. Sometimes sharing information will change that difference, but sometimes it won't, and then you just go on and find where you can find common ground.

32:19 TN: So what benefits do you see in your life from being involved as an advocate? What is the best feeling that you get at the end of the day?

32:35 LT: I'd say, actually, some of my best moments have been when I found a way forward on something that seemed intractable, that seemed really hard to resolve. And sometimes, if you just poke at a problem from different angles, you'll find that there is a solution. There's a wonderful cartoon that I wish I could present, but it shows a cat in a carrier trying to figure out how to get out of the closed door, and the top is off the carrier. If you focus too much on the problem rather than the potential solutions, you can lose sight of things. It's immensely gratifying to see something actually happened for the public good, because you were able to work with people and find a way forward. It's something that I value a lot.

33:32 TN: For me, I think the best feeling is when I am able to work with somebody who started out having a difference of opinion and I'm able to get them to look at something from another side, or when I change my mind. I think... I tell people all the time that when I started this journey, I never would have thought that I would be a person who uses first person language, and now I'm the biggest advocate for first person language, and it's like I didn't realize that I didn't have respect for myself. And so it's funny that sometimes the best feelings are the feelings when we change our own mind, because we're learning. And I think that's the point, right? We want all of you out there in podcast land to get those feelings of pride and community and empowerment. I've made so many life-long friends and people I consider family from being involved in advocacy.

34:49 TN: And you can have that by by being involved in... We want you to join us at Advocacy Day for Access and Independence on April 1st and meet people and get involved. And join other organizations, join the league, join anything that you think represents you. And if you have never been to Advocacy Day for Access Your Independence, it's a great chance to listen to the disability community leaders and policy makers rallying together to bring awareness to disability rights issues. And that is on April 1st, it is on the South Carolina Capital steps. And another reminder: If you are interested in meeting with legislators, at Advocacy Day, you can sign up for our advocacy training class, where we will be covering ways to make you feel more confident talking to law makers in more detail at the Abel, South Carolina Columbia offices or by webinar.

35:54 TN: So, for more information on Advocacy Day or training classes, check out Abel, South Carolina's Twitter, Facebook, Instagram, send us an email, or give us call. So, with that, do you have any closing remarks, thoughts...

36:11 LT: Yeah, I think very often people think, "Well, why are they gonna listen to me?" And when you're dealing with fairly small governmental units like a house district in South Carolina, there really are not very many people who are very vocal in dealing with their representatives, and they pay attention to the people who are. And even getting input cards or postcards, phone calls, whatever from 15 people will definitely get the attention of a member of the House of Representatives in South Carolina. So don't assume that your voice is lost.

36:50 TN: I think our stories, our unique experiences, for the sheer fact that we are the people that we are, go just a long way, you know? Just people who come together and have a community, people who are residents of the state of South Carolina bothering to come and talk to our legislators. It's... Such a small percentage of people vote. I mean, even a smaller percentage of those people actually bother to talk to their law makers, and so just for that they will listen to you. Harness your inner power, be an empowered person, and remember your law maker works for you. You are the voter, you're the one who gives them their job, right? And don't be snotty about it, you know, but have that...

37:49 LT: You don't have to be snotty about it. If there's anything an elected official thinks about all the time it's, "These people I'm dealing with either vote for me or won't."

[laughter]

38:00 LT: You don't have to remind them.

38:03 TN: I would like to thank my guest Lynn Teague, Vice President of Issues in Action of the League of Women Voters of South Carolina. And I would like to thank all of you for spending this time with me today. I hope to see all of you who are South Carolina residents at self-advocacy class and Advocacy Day for Access into Independence on April 1st. You have been parked in the Access Isle, a production of Abel, South Carolina.

[music]

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Disability PSA: Voter Registration 2020 Join Dori Tempio and Sydney Arsenault, our hosts, as they discuss how to register to vote and why voting is so darn important. Register to vote now at scvotes.org where you can also find other helpful voter information.

Disclaimer Able South Carolina is providing this podcast as a public service, but it is neither a legal interpretation nor a statement of local, state, or federal legislation or policy. Reference to any specific product or entity does not constitute an endorsement or recommendation by Able South Carolina. The views expressed by guests are their own and their appearance on the program does not imply an endorsement of them or any entity they represent. Views and opinions expressed by Able South Carolina interns, board members, and staff are those of the individual and do not necessarily reflect the view of the Able South Carolina or any of its funders. If you have any questions about this disclaimer, please contact Able SC.

Transcript

[music]

00:13 Sydney Arsenault: It's been 11016 days since the Americans with Disabilities Act was passed.

00:19 Dori Tempio: And you are parked in the Access Aisle.

[music]

00:32 SA: Welcome everyone. My name is Sydney Arsenault, I'm a Master's level Social work intern with AbleSC.

00:39 DT: Hi, I'm Dori Tempio. I am the director of Community Outreach and consumer rights for Able South Carolina.

00:49 SA: Dori, I'm so excited to be here with you today because we're talking about something we both really care about, which is registering to vote, we're in the middle of an election year, so it's important that we're all registered and ready to make our voices heard on November 4th, the election day.

01:04 DT: You got it Sydney, I have been a proud voter for years, and I am so excited about the opportunity for people with disabilities to register to vote. It's extremely important for people with disabilities to get out and vote so they can have a say in the legislative decisions that affect their lives. People like you and me, people with disabilities, we elect officials from the president and senators, on down to our local towns council people and judges. It's important because we have the opportunity to either support or block improvements in disability policy with the way we cast our votes. So whether it's benefits and employment, health insurance, home care, criminal justice, equal pay, accessibility and more. When we get out and register to vote and then cast our vote, we have opportunities to participate in the community. As a person with a disability, I have been voting for years. As a disabled voter, I have been using many different methods to vote over the years, I have used in-person voting, absentee ballot, and curbside voting. With each of these methods of voting, I have used what we call reasonable accommodations, and all people with disabilities have access to those tools and supports, they need to cast their vote.

02:44 DT: So if you wanna learn more about reasonable accommodations or ask questions about support you may need to vote, please don't hesitate to ask us at Able South Carolina, and we are happy to support you in any way that we can.

03:00 SA: That's exactly right. And thank you so much for sharing your experience with us. We wanna make sure that everyone is out there fighting for the issues they care about, and one of those ways is by voting. And there are a few requirements we should keep in mind while preparing to register to vote. You need to be at least 18 years old before the next election, you need to be a United States citizen, as well as a resident of South Carolina in the county and precinct in which you are registering, you cannot be under a court order declaring you mentally incompetent, you cannot be confined in any public prison resulting from the conviction of a crime, and you can not have a conviction of a felony or offense against the election laws. Or if you do have a previous conviction, you must have served the entire sentence, including probation and parole or received a pardon for this conviction.

03:57 DT: As Sydney just mentioned, there are so many different ways you can register to vote, that include online, in-person, by mail email or fax, South Carolina offers online voter registration, you can register by mail, email or fax to vote in South Carolina, by printing a voter registration form, filling it out and mailing it to your local election office. Or if you're like me, I prefer to register to vote in person, so you can go to your local election office and register in person to vote.

04:34 SA: Yeah, even though there are so many different ways, they all pretty much ask for the same information, this includes your date of birth, your social security number, and a South Carolina driver's license number or ID card number. If you don't have a license or ID card, you can use a current utility bill, a bank statement, a paycheck or other government document that shows your name and address in the county you're trying to register. This license and ID requirement is not necessary if you are a voter with a disability, a member of the US Uniform Services or merchant marines or their families, or a US citizen residing outside the United States.

05:18 DT: Don't forget, the fastest way to register is online at scvotes.gov, you will need a South Carolina driver's license or ID card to register online. And remember, if we don't vote and we don't have an ID to vote, when we don't have an ID to vote, it can cause sometimes in-person voter impersonation and can make us feel less confident in the election process.

05:49 SA: Right. And we wanna protect our right to vote and make our voices heard. We'll be back with more information on voting logistics closer to election day, so please stay tuned. But in the meantime, if you have any questions on registering to vote, please go to scvotes.gov or contact Able and we can send you in the right direction.

06:10 DT: Thank you for listening. And make sure you get out to vote.

06:14 SA: You have been parked in the Access Aisle a production of AbleSC.

[music]

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LGBTQ+ Pride Month Panel In this episode on the Access Aisle, Able South Carolina’s Asha Jones celebrates LGBTQ+ Pride Month with panelists Dr. Julie Edwards and Effy Francis who are members of both the disability and LGBTQ+ communities. Asha, Effy, and Julie discuss the importance of community, ways to improve access, and give personal perspectives on life as a person who identifies as a member of multiple and sometimes conflicting communities.

'The Access Aisle' is a production of Able South Carolina.

Panelists Asha Jones is an EQUIP leader at Able SC who is a non-binary lesbian. Asha is passionate about disability education because she wants other people with disabilities to take pride in and advocate for themselves. She also wants to make society more accepting and accessible as a whole.

Dr. Julie Edwards is a queer and disabled activist raised in Columbia, SC. Julie earned her doctorate in Pharmacy from the University of South Carolina College of Pharmacy. Her activism focuses on rooting out inequities in the healthcare system. She looks forward to continuing to build community and solidarity locally so that more disabled and/or LGBTQIA+ individuals will run for and be elected office.

Effy Alece Francis is a queer, non-binary trans person with physical and psychiatric disabilities, working, living & advocating in the south. Licensed as an esthetician and professional makeup artist, when they are not working in the beauty & wellness industry they are pushing for equity, inclusion and social justice in every aspect of life.

Transcript [music]

00:14 Asha Jones: It has been 10,911 days since the Americans With Disabilities Act was passed and you are Parked in The Access Aisle. June is Pride Month, a time where the LGBTQ+ community celebrates our various identities, histories, and our resilience and resistance. Members of the LGBTQ+ community come from various backgrounds and many of us are also people with disabilities. It is estimated that over one-third of LGBTQ+ people are also people with disabilities. I have two panelists here today who are members of both communities. Would you all go ahead and introduce yourselves with your name, pronoun, and a little bit about yourself? My name is Aja Jones and I use she/her/hers and they/them/their pronouns. I am a non-binary lesbian. I am an EQUIP leader at ABLE South Carolina, and a fun fact is that I'm currently watching She-Ra and the Princesses of Power.

01:07 Julie Edwards: My name is Julie Edwards. I use she/her/hers pronouns. I'm your local bi-pan queer cat lady. I have three cats and a dog who acts like a cat. I am an activist, I've done work with Indivisible Midlands as well as other local organizations. And excited to be here.

01:23 Effy Francis: And my name is Effy Francis. My pronouns are they/them/theirs. I'm a non-binary transgender as well as pansexual person. As far as work goes, I'm a licensed esthetician and make-up artist by trade, so love to beat me some faces, make 'em look cute, working on skincare, [chuckle] do it for all my friends. And then I am also a queer and disabled activist on every day that ends with Y.

01:50 AJ: Awesome, thank you so much. The first question I have for you is: What do you think the importance of community is for people with disabilities as well as the LGBTQ+ community?

02:02 JE: I'll start. Communities are where a lot of people on the fringes of both communities find themselves. I have had Type I since I was nine, but I didn't really understand what being disabled meant until I found a community on Twitter. So I really stepped into owning my disability status, identifying as disabled, and it brought me a lot of connections, a lot of hope. Hope and joy are where our communities shine, for me at least. And especially in this moment of this pandemic, we're all dealing with so much loneliness, and reaching out to people that we know that have similar life experiences to us is kind of a tether in all the storm that's going on right now.

02:46 EF: This is Effy. So I honestly think that community for any marginalized group is everything, but honestly, especially because I identify with both groups, but especially for disabled people and folks in the LGBTQI+ community. If we're going by history alone, we know that people with disabilities have traditionally been segregated from society, and so that's why the recent film on Netflix, Crip Camp, I really, really loved. It's, I think, a radical insight into what community looks like for folks with disabilities. I mean, as it turns out, we are just like everybody else. We have friends, we like exploring our sexuality, playing instruments, having dance parties, literally everything that non-disabled people do, we just literally have differing access needs. And going along with what Julie said, the same goes for the LGBTQIA+ community in that we have both faced such societal stigma. The phrase, "Nothing about us without us," is what first jumps to mind for me, which was really spearheaded by the disability community and now I hear it everywhere. So it's really cool that that resonates with people, and I think it really shows that having that peer-based kind of community is so, so important.

04:11 JE: Yeah, in this pandemic time, queer people are especially going to be at risk for losing their jobs. It's hard to get hired if you don't present the way society expects you to already, but I think one thing that is so amazing about our communities is how we provide mutual aid for each other. If you know someone's out of work, well, I know three people I can ask to throw in $10 and maybe that person gets to eat that day. And while we still fight for the structural changes that need to happen, it's a beautiful thing to see our communities aid each other.

04:42 EF: Absolutely, kind of my mantra lately. Community Care. Who takes care of us? We take care of us.

04:49 AJ: Agreed. I really agree with that. Community is so important and we do take care of each other. My next question is a sort of follow-up to that. Since you both are both advocates and activists, would you mind telling a little bit about your advocacy in these communities?

05:04 JE: Sure, I'll start. My actual first foray into activism was after the Pulse massacre. I, like many in the queer community, just was devastated by it and I felt like I had to do something. So I started on Facebook reporting gun sales that were not supposed to be happening, and that got me interested in especially online activism, being a disabled person. And so I've helped several movements. I'm Type I diabetic, so I'm involved with the Insulin For All movement providing affordable, I want free, insulin to diabetics everywhere, 'cause it is such an expensive medication and our community is very tightly bonded. We are always crowdsourcing insulin for people. So that's the stuff I do on a day-to-day basis.

05:48 EF: That's fantastic, Julie. So I actually got my start into advocacy and activist work as an EQUIP leader with ABLE South Carolina, kinda what Aja's really excelling at today. I worked as an EQUIP leader from almost the beginning of the program's inception as a year-round program, not just a six-week summer series, and I did that until about two years ago. So aside from sharing my lived experience as a disabled young adult, I really, really focused my advocacy work on things like sexual health education and LGBTQI+ intersectionality for the disability community. Some examples of that were I served on a coalition such as SAASH, the State Alliance for Adolescent Sexual Health, and representing an event such as the Safe School Summit, which was an annual summit to highlight the kind of violence that happens in schools and for young adults, when it comes to bullying and all the things that intersect with that. And so I really focused on how that impacts students with disabilities, young adults with disabilities, as well as I eventually, really came into activism as a Fat Liberationist and pushing for openness around that as well.

07:14 AJ: Thank you. So we've already started touching on this. What topics and issues do you think overlap between communities?

07:21 JE: The one that I think most people in the LGBTQIA community don't fully realize is that not all disabled people, including queer disabled people, can get married. If you rely on Medicaid, it could be very possible that getting married would remove your status for Medicaid. I am currently in that situation, and so it gets... I try to tell people that marriage equality hasn't fully come all the way to everybody and that the fight's not over. So that's definitely one area that overlaps.

07:52 EF: Julie, oh my gosh, I'm so glad you brought that up because I feel like that is an issue that constantly gets overlooked. So thank you for bringing that up. For me, while I think there are a lot of similar overlaps between the queer and the disability communities, such as things like under-representation and things like media and educational curriculum, both communities deal with micro-aggressions and systemic prejudice, and both communities have had their own prominent civil rights movements in the US. There are still, however, certain ways in which our stigmas are actually complete opposites. And I really noticed this doing advocacy work for young adults, is that while queer folks are hyper-sexualized, disabled folks tend to be de-sexualized and presumed to be asexual, therefore not needing sexual health education. And where queer folks are vilified and viewed as deviants, disabled folks are pitied and viewed as incompetent. So I just think it's really interesting how both these communities intersect, both of them grow through a lot of similar barriers. It's just interesting to see how some, they are complete opposites and I think that's really something that needs to be accounted for.

09:11 JE: When I was in pharmacy school, I got a chance to really see how systemically-oppressed queer people are, as well as disabled people in the medical community. As far as even just accessing queer-affirming, trans-affirming doctors here, it's difficult sometimes. Even having coverage to go see those doctors, very expensive, and our state has not expanded Medicaid as it should have when the ACA passed. So unfortunately, disabled folks, queer folks, and then, especially, black-queer-disabled folks are at such a high risk of being overlooked by the medical community. And you see that playing out in this pandemic where black people are dying at such a higher rate of this, and we know why. And as a queer disabled person, I have a doctorate and I still have a hard time getting doctors to take me seriously, to listen to me. And again, that's where it comes back to community, is sometimes you can't find doctors that do that and your community's gotta be there for you to either help you find new providers...

10:15 JE: Honestly, there's been times where I've seen people who realize that they had a condition that they needed to get seen, thanks to communities talking. But those structural ones, especially medical racism, is one that cut... It's intersectional struggle. We have to look at those that are most at-risk and try to get them what they need. And so I think Medicare for All and those plans, that if we were able to get there, think of all the disabled people who currently are underemployed because maybe they need the Medicare. I'm on SSDI, I need my Medicare and Medicaid. I can't really go work part-time right now 'cause I am too ill to, but if I were feeling like I could, it's sometimes difficult to then have health coverage. So having universal health coverage is gonna allow queer disabled folks to open up businesses, it's gonna allow them to start non-profits more easily because that side of it will be taken care of, so that's something that I'm passionate about.

[music]

11:29 AJ: There are issues people face as people with disabilities and there are issues that people face as queer trans people. What issues and topics do you think are important that happen in the spaces where that crosses, when these identities come together?

11:45 JE: One issue, I guess, is who we're centering when we have our stories told, queer disabled people.

11:52 EF: When looking at things like I believe discrimination and misunderstandings in both disability and LGBTQI+ spaces, as somebody with these multiple identities, this is where things get frustrating for me. As someone who both has a significant disability as well as being a gender and sexual minority, I have found that despite both communities having so many intersections and so many shared oppressions, it's still really difficult to find a place where both my identity and access needs are respected at the same time. So in queer spaces, it's often very difficult to find things like specifically, disability inclusion, whether it's architectural accessibility, accessibility via ASL interpretation, image-video captioning, being accommodating of neurodivergency, etcetera.

12:49 JE: Absolutely. I stopped going to some conferences because I just got so tired of being overlooked. Conferences especially, I've just had a hard time, and that's an area where we could employ queer disabled people to have sensitivity training, access training. You need to make sure that your movements are open to not just queer people, queer disabled people. Our stories matter and we want to tell them, but we got to get where we're able to do so, and being overlooked, it hurts.

13:19 EF: And kind of on the flip side, in disability community spaces, I have honestly found it personally near impossible to have things like my identity and my pronouns, as a non-binary person, respected and used. So I think there is still a lot of work to be done as far as disability inclusion in the queer community and queer inclusivity in the disability community, and I'm trying to do everything I possibly can to marry the two and make it easier for people like myself who have these multiple parts of our identity, respected and taken seriously.

13:54 JE: I also really felt that in higher education. When I was in grad school, being queer and being disabled was really tough to navigate in a conservative, professional environment. And that's where so much growth could be done, and it's just the sort of respectability thing that people expect from queer people and queer disabled people. Breaking down the notions that we have to use the tone of voice you wanna hear to tell you why you're wrong. [chuckle] But in Higher Ed, it was tough because I didn't wanna be seen as deficient in my program and not deserving of my degree, but what was really happening was that my professors weren't taking my access needs seriously, they were punishing me at times for it, for time missed or different things. And I know that it's really hard in academia for queer and queer disabled people to get positions where honestly they do a ton of good as far as inclusion and access.

14:53 EF: As somebody in both the communities, one thing that has been really helpful with me is honestly the app Twitter. It has really become a space that I feel like activists within the disabled community have really been thriving. It's given a lot of visibility, especially in terms of activism. And so that's one of the places where I feel like a lot of people can learn from and access what these activists are doing in real time.

15:25 JE: Yeah, sometimes I'll just actually Google disability hashtags, and I often find people with big platforms, they'll have little write ups of these hashtags like, "Disabled people are hot," or, "Disabled isn't a bad word," or... There's a bunch of hashtags, and I always find people to follow and talk to and connect with through those, again, through Twitter.

15:47 AJ: Thank you for sharing that. I'm gonna have to also say Twitter has been a wonderful resource for me, connecting especially with disability activists and also just the peer support that you find there online for either community. And for those who are a member of both, there's lots of peer support out there, and that has been very helpful for me to learn more about myself and be able to do the things that I want to do because I've spoken to people who have been in similar situations before. So thank you for that.

16:18 JE: I would say another resource is find queer artists. If you're into music or arts or things, Columbia has a great art scene that is always open to finding new people to add to. So once we get past where we can have people and gatherings in larger spaces, the arts community is always where you find resilience, and the people that are the most resilient are the ones oppressed at these intersections. So that's another place that I tend to find friends.

16:50 AJ: Well, thank you. So my next question: What would make the LGBTQIA+ space and disability spaces more accessible for their members who are a part of both communities?

17:04 EF: Honestly, I just want both communities to have better awareness of each other, and honestly, even going beyond awareness, acceptance. We have so much in common, so much overlap in the folks that make up these communities. I just want people with these intersecting identities like myself and Julie and Aja to feel seamlessly at home in both groups. And I know with the autistic community specifically, pushing for not just awareness, but pushing for acceptance. And I think that can be carried into this kind of situation as well. 'Cause it's like, we know we exist, other people know we exist, and I think it's more of just a matter of pushing for not just knowing we exist, but actually how to accommodate us.

17:56 JE: And even past accommodation, how to put people like us in power positions, in the positions that a lot of time traditionally, if it's the LGBTQI movement, it was generally white gay men as with cis men as the face, and getting more people who are disabled and queer in these positions where we can have change and make it more accessible for disabled people is really important, that sort of pass-the-mic mentality.

18:27 EF: Oh, absolutely. Julie, I think you hit it on the head earlier. It's just thinking about, who are we centering in these communities? Who is underrepresented? I don't think it's a matter of speak up for the voiceless, which is a terrible way to phrase things. I think it's, exactly, it's pass-the-mic, give people the opportunity and the access to speak up for themselves.

18:52 JE: Yeah, there's one specific thing that tears at my heart specifically, that cuts definitely both, is if we think about incarceration, how disabled people are treated in prison. I don't see a ton of activists or disabled activists that are specifically focused on abolition, I wanna find more of them, because I've seen stories of how chronically ill and disabled people and queer trans folks in incarceration situations. I don't think that advocacy for them gets talked about nearly as much as it should, especially in a state like South Carolina.

19:29 EF: Right. School-to-Prison Pipeline is one that definitely jumps to mind affecting...

19:33 JE: Exactly.

19:34 EF: It's affecting primarily people of color, black people especially, and intersecting, again, with disability, folks with psychiatric issues that are deemed behavioral and then just get, honestly, shut down by the system, which it was built to do. So, again, [chuckle] so many good things.

19:53 JE: Exactly.

19:54 AJ: Both people with disabilities and LGBTQIA+ people are over-represented in the carceral system. And when you factor in race, especially with black people, the disparities become even more obvious. So thank you for talking about that. So my next question is: What experiences do you have with pride in those communities, and how do you show that pride?

20:18 JE: Pride through art is just so beautiful to me, the art that people create in these challenging times, whether it be Effy and I, we both love make-up and to express ourselves through that. But visual arts, all of it, Pride Month gives me joy like it should and that sense of community in times where society wants to separate us, Pride is very much a coming-together moment. So, for me, I just, I like to hang my Bisexual Pride flag outside my house, do bright make-up and have fun. Unfortunately, this year it's up in the air whether people will be able to gather, so I'm interested to see the creative ways that people have Pride this year and create that resilience art that's just inspiring and makes me wanna keep fighting.

21:09 EF: I think the way that I have and show the pride that I carry in both these communities is super radical. So between reclamation of the term 'queer' as an all-encompassing term that I feel really fits both my gender identity and my sexuality, and then something like embracing identity-first language for describing my experience as a disabled person. Language, honestly, I think can be a really great way to show pride because it's not just who we are, it's how we describe who we are, and through language especially. I don't like to use all of these euphemisms for my identity, like the hashtag campaign Say the Word. I think it's really important to highlight that disability, disabled, it's not about something...

[overlapping conversation]

22:03 JE: There's one that disabled people, Disabled People Are Hot. That is a good one to check out, that hashtag.

22:10 EF: Yep, created by Andrew Gurza. Yeah. [chuckle]

22:12 JE: Exactly. There are such great hashtags that disabled people... It's been so joyous to see expressions of sexuality, like you said earlier Effy, that normally are ignored by society or people are surprised that disabled people are sexual, and it's just... [chuckle]

22:28 EF: Right.

22:30 JE: It's odd to me at first because I've never considered that being the possibility or the reality. But Pride, I think also educates people who are not part of either community about how they are treating people in the communities. And again, like you said, modeling language, teaching a lot of... I don't like Allies as a term, but people that show solidarity with our communities, teaching them how to use the language and then go out in their communities and help spread this acceptance, awareness, is also just really important. It's hard to measure word-of-mouth change, but it is one of the most foundational ones, is teaching people in your life who you are, how they're not respecting you potentially, but how they could do better and how they can show you love. 'Cause that's what both communities really do survive on is the love that we find in our communities.

23:25 AJ: Thank you for those wonderful responses. I definitely look forward to seeing what Pride looks like this month. And I hope that we find a way to show that sense of community and to share that love, even though we may physically be separated. And I think the disability community does a good job of that too. So perhaps that's something that we can share. My last question is: Moving forward, what changes are you working on or what changes would you like to happen within these communities, how these communities interact with each other?

23:56 EF: I can jump on this one. So like I mentioned before, my advocacy work has always really been specifically tuned to highlighting the similarities between these two communities and how we're so much stronger together. I guess, as an example, I attended a trans and queer-focused camp within the last two years and while it was an amazing experience, I was able to join other campers following the event, other campers with disabilities, and pushing for better future accessibility. We actually came together as a group and put together a letter that we sent to the non-profit org that was hosting the camp. And honestly, we saw some really great change through that advocacy work, and I think that's just a testament to the kind of work that we can do together. And honestly, that's just the hope I carry for not only the future, but for the present. I think we do place a lot of hope in talking about the future, but also, we have the tools we need to make the present better now. And I think through these group advocacy efforts for both ourselves and on behalf of others, we will reach full inclusion no matter where or who we are.

25:18 JE: Yeah. And sort of building on that, I think one of the most important thing any movement or community or non-profit or activism group, whatever you... You always need to be looking inward and being introspective about who you're leaving out in your org, who's not being listened to, and just to really address things within the community, such as fat oppression, racism in both communities. It's... And talking about language, I see a lot of times people in my queer community, unfortunately, using language online that's very disablist, making fun of mental illness, calling different political leaders fat, and trying to get them to understand that our struggles are united because no one is free until we all are. So a lot of introspection I think needs to be done constantly, not just when if there is any sort of incident or outrage, that's not necessarily the time to... Introspection should be going on all the time. And that's what I like to, when I talk to new, younger activists, really get into their head about really taking a step back.

26:35 JE: 'Cause sometimes you want to help something so badly, but you don't realize you're not giving the help that the person needs. If that's the case, then there's really no point in organizing or doing what you're doing. So that's a really important thing moving forward that really all communities need, but especially our queer and disabled communities.

26:54 AJ: Thank you all for Zooming in here today. Any final remarks?

26:58 EF: Yeah, just as a final comment on what we've been sharing today, and Julie, I really, really think you hit it on the head there at the end is, I think inclusion is not an end goal, it's a journey, and it's one that never ends. And so, like you said, I think we need to constantly be introspective, we always need to commit ourselves to once we know better, we do better. It's not offensive being called out when you're using the wrong language, doing something that is not actually helping the community you're trying to help. Going on the intent-versus-impact model, I think we just need to be mindful of what our impact is and I think that that will really help this inclusion that we're trying to reach. But Aja, thank you so much for having us on here today.

27:58 AJ: Yeah.

27:58 EF: It was really great to be able to speak on our experiences.

28:01 JE: I was gonna add just one last thing. I wanna speak to some of the listeners out there right now who maybe haven't identified with the community fully. Pride as a queer person and Pride as a disabled person aren't time-sensitive. Just because you aren't visible and loud in your work that you're doing as a queer disabled person, it's not time sensitive. We welcome you with open arms to the community, but it is all about self-exploration too and figuring out where you fit in, where you need support and where you need community. So if you're not quite there yet, it took me time to identify as disabled, but once I did, I found so much love and support, that I just wanna encourage people to look for communities 'cause it's a lonely time right now.

28:47 AJ: Thank you all for being here today and thank you to our listeners. ABLE South Carolina is here for you and we want you to be here with us, so subscribe to our email, like us on Facebook, follow us on Twitter and contact us by phone. You've been parked in The Access Aisle, a production of Able South Carolina.

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View Details

In this episode of the Access Aisle, Able SC’s Director of Advocacy and Community Engagement, Robbie Kopp, and Advocacy Coordinator Tiffany Namey team up with Assistant Regional Census Manager Marilyn Stephens to bust some myths and share some facts about the U.S. Census. In this episode, the hosts discuss why it is important for people with disabilities to be counted, how the 2020 Census is the most accessible census in history, how the current pandemic has impacted the census, and much more.

Episode Guest: Marilyn Stephens: Assistant Regional Census Manager for the Atlanta Region

Marilyn Stephens is one of the most requested Census Bureau speakers. The Miami, Florida native earned a Bachelor of Arts degree in Marketing. Marilyn currently serves the Census Bureau as the Assistant Regional Census Manager for the Atlanta Region which is responsible for census operations in Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina and South Carolina. In this capacity, she manages the community engagement and partnership program throughout the region. Moreover, she meets with and serves as the agency’s liaison to the region’s seven governors.

In November 2003, she received the Bronze Medal Award, the highest meritorious honor given by the U.S. Census Bureau. Also, she is the chairperson of the South Florida Federal Executive Board. The Federal Executive Board system was the creation of President John F. Kennedy (reauthorization is granted by each subsequent President).

Credits:

'Access Aisle' is produced by Robbie Kopp, Tiffany Namey, and Sarah Nichols. Our editor is Robbie Kopp. Able South Carolina.

Disclaimer:

Able South Carolina is providing this podcast as a public service, but it is neither a legal interpretation nor a statement of local, state, or federal legislation or policy. Reference to any specific product or entity does not constitute an endorsement or recommendation by Able South Carolina. The views expressed by guests are their own and their appearance on the program does not imply an endorsement of them or any entity they represent. Views and opinions expressed by Able South Carolina interns, board members, and staff are those of the individual and do not necessarily reflect the view of the Able South Carolina or any of its funders. If you have any questions about this disclaimer, please contact our Director of Advocacy and Community Access.

Transcript:

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00:14 Tiffany Namey: It has been 10,875 days since the Americans with Disabilities Act was passed.

00:22 Robbie Kopp: And you are parked in the Access Aisle.

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00:32 RK: My name is Robbie Kopp, the Director of Advocacy and Community Access at Able South Carolina.

00:37 TN: And I am Tiffany Namey, the Advocacy Coordinator for Able South Carolina.

00:41 RK: Today, we are gonna take on your questions about the census and make sure you are comfortable, confident and ready to get your census questionnaire in and done. Joining us today is Marilyn Stephens, Assistant Regional Census Manager for the Atlanta Region of the United States Census Bureau. We're gonna be asking Marilyn your questions that you share here with us and make sure that you have everything you need in order to stand up and be counted for the 2020 US Census. So Marilyn, welcome, so glad to have you with us.

01:10 Marilyn Stephens: It's my absolute pleasure. Thank you for inviting me.

01:13 RK: Yeah, absolutely. So we're gonna start with a really easy question, hopefully, but Marilyn, tell us what is the census and why does it matter?

01:21 MS: Based on Article One, Section Two of the United States Constitution, every 10 years, and really, we are sitting in zero, the Census Bureau is tasked with counting the entire population of the United States. The purpose of the census is for apportionment to determine how many seats each state gets in Congress, and that really determines that state's voice. So the more seats you have, the bigger your voice. Well, Congress has changed over time since the first census was taken in 1790, it went from 65 to 103, now to 435, where it stands. So the census is about political power, and it's about money. States depend on the $675 billion in resources that are allocated from the federal government down to the states every year. And in those funding formulas, the basis is census data.

02:29 RK: So that's really incredible. So folks that are really interested in the political voice of South Carolina, making sure that we have a fair and accurate count in a state where we expect that there's been a population increase can change into more congressional seats and greater representation in the United States House, and that's really helpful to know. And tell me that number again, Marilyn. Let's drive home that point of how much money is really at stake when it comes to the formula for apportionment.

03:00 MS: It's $675 billion. That's $7 trillion over a decade. So it gets to be real money.

[laughter]

03:08 TN: That is a lot of money.

03:11 RK: Real money is such a huge understatement. Yeah, that's a $7 trillion impact over the next 10 years and making sure that South Carolina gets its piece of the pie.

03:21 TN: For people with disabilities, Robbie, that money goes to programs like SNAP, and what other kinds of programs might that go to, do you think, that would impact the lives of people with disabilities?

03:34 RK: The transportation dollar is a really big piece of that too, that we can't overlook. Marilyn, tell us some of the other ways that that $7 trillion kinda breaks down into programs for real people on the ground.

03:46 MS: Medicaid, Medicare, TANF, Temporary Assistance for Needy Families, education programs, libraries, veterans, senior services, so the entire plethora of federal programs, all of them impact people with disabilities.

04:10 RK: For sure.

04:10 MS: Because of their families, because of their children, because of their communities. Highway construction and planning, emergency preparedness, community health clinics, all of these things are heavily impacted because of census numbers.

04:27 RK: Absolutely. So it's really clear and really hearing all of the programs that are impacted by the census numbers, I mean it's clear that the disability community is impacted and what services are available and provided. So let's talk just a little bit about how to get the census done. What are some of the questions that folks can expect as they complete the census?

04:48 MS: Well, the good thing is the census is simple. We don't deal with a lot of questions, and people really like that about the census. We ask for your name, we ask for your sex, we ask for your birthdate, and we ask if you are of Hispanic origin, we ask your race. Now, if there are others in the household, we ask what is their relationship to you. And household relationship has been on the census questionnaire since 1880. So it's not really a new question. It's about 10 questions, a little less than that, and it takes about 10 minutes.

05:29 RK: Yeah, and I think that's the thing that folks sometimes miss is that we hear a lot of information about the census, I think there are a lot of community reminders, and it also seems like never quite enough of those community reminders, but the time that it takes to really complete the census is next to nothing. Our household, we did the census the first week that it was available online, and it took... I think we did it in like seven minutes for the three of us and it was really, really simple.

06:00 MS: Yes. And I think that this census cycle is the first time that we had so many options to participate. In the previous cycles, we'll email the questionnaire out and you send the questionnaire back to us. And this time, with all the options of online, telephone and by mail, I think that people with disabilities have been giving us really positive feedback about this was just ideal.

06:27 RK: Yeah, and that's really great to hear. I think in 2020, it makes sense for us to do things online and make sure that that online information is accessible because technology is making... It's leveling the playing field for folks with and without disabilities and making sure that there's access to participation and information. It was so glad to hear that the Census Bureau has been making that leap along with the times. We wanna talk more about those formats. Before we do that, I wanna ask just a couple of other questions that I know that folks may have been a little nervous about and just wanna make sure that we have a clear answer on whether that's asked. So first, we had a question that says, will I be asked for my social security number in the census?

07:07 MS: No. And we've had people that see the boxes on the bottom of that first question, and they think it's for social security number. It's for your telephone number. So if in fact, we need to contact you, for any reason, we will do that. And it's not for telemarketing. We're not gonna use information any other way. But if we have to contact you for whatever reason, we will. Other than that, no, we do not ask for your social security number, or your bank number.

07:34 RK: That was gonna be my next question. You took the words right out of my mouth. So there... The banking question, none of that is necessary, none of that is part of the census and neither is the social security number.

07:45 MS: It is not. This is a surveys that your listeners may be a part of. We don't ask for social security numbers on the other sets of surveys because they may be in sample for another census survey.

08:00 RK: Okay, well that's really helpful to know too. Yeah, great. I think that the social security number question and the question about financial information or banking information, we all and rightfully so, really wanna protect that and make sure that it's not shared. So listeners hear us, it's not part of the census. Don't delay in completing the census for fear of having to share a social security number or any banking information. It's not part of it.

08:25 MS: Right. If you're part of the American Community Survey, we do ask some income questions on the American Community Survey. But it's not about asking what your bank account is or your routing numbers. It's about asking a range of your income, the types of investments. And this is part of going to the economic indicators on the American Community Survey. But no, we're not asking for bank numbers and social security numbers or anything.

08:51 RK: Good. We've talked about just the short number of questions that there actually are and how we would say they're non-invasive. They're not prying questions, they're not sensitive questions, but the census is brief and easy. Tell me about the security of the data that is collected from the census. How can people know that their information is kept safe?

09:14 MS: Absolutely. This the number one question that we get, what about my privacy and my confidentiality? Census data is protected by two laws, Title 13, of the United States Code and Title 44. Under Title 13, the Census Bureau cannot publish anything that will identify an individual or household or even an establishment on our economic surveys that will show where you live, that you gave us this answer. In other words, it won't say, "Marilyn Stephens says that she is 21." Again. And it won't say that Marilyn Stephens lives here in Nevada, it won't say any of that, or North Carolina, it's just an aggregate of data. The number... Just age ranges, how many people are male, how many people are female, how many people own a home with a mortgage, how many people own a home without a mortgage. What types of relationships, How many have spouses, how many are children, how many are in-laws, how many are parents. So we don't publish anything that will identify you or your household with any response you've given to me.

10:31 MS: Then title 13 goes a step further. Census data cannot be gathered by anybody. Nobody from law enforcement, no CIA, no FBI, not even the IRS on that even ICE not even immigration cannot be subpoenaed by the courts, cannot be gathered by the President. No one can get census data. Census data is floating out here on this island, that's highly protected. Under Title 44, the other law that protects census data, census data is sealed for 72 years. Therefore, those genealogists that are your listeners are wondering when is the next release of census data, the last release was in 2012 for the 1940 census, because the 72-year threshold of the title 44 had been met. The 1950 census will be released in 2022. And that would be the latest census to be in the public domain.

11:31 MS: So census data is protected. However, if for any reason similar to what happened during the Katrina catastrophe in the Gulf Coast, and you have to be relocated and you don't have any identification, through the Census Bureau's age search program there's a BC, Bravo Charlie, 600 form where you can request... I can't request your information, only you can. And we will send you a document that says you are Marilyn Stephens, you were this age during a decennial census, and you can use that to get entitlements, to get a passport. And literally to put your life back together.

12:13 RK: That's really amazing. So the data is, I mean, it sounds like it is incredibly well protected from even federal agencies, but when you need it as an individual, if something unbelievable happened, something terrible or a disaster, you can get access back to your own information to confirm your own identity?

12:34 MS: Absolutely.

12:35 RK: That's amazing. It sounds like it's set up to really serve the public benefit in the least of risk way possible.

12:44 MS: Absolutely. I'm telling you, when people say, "Well, this is private or confidential." You get something in the mail that privacy policy has changed, the first thing I look for is it under Title 13? [chuckle] Because I know that it's protected by law and all census employees are covered under the law on a lifetime sworn status, lifetime sworn status. In the old days, our grandparents talked about taking things to your grave. Well, I think the lawmakers heard that and made that Title 13. Because we have lifetime sworn status, we cannot release... We cannot reveal anything that we know will identify you or your household. That can lead to a prison term and/or a quarter of a million dollar fine.

13:31 TN: It sounds like that census information really can save your life though, it's just a really good backup. It takes 10 minutes and you've given yourself an insurance policy to have your information protected.

13:45 MS: Yes, and just think, for any reason, if your children need information about themselves. Because often, parents are leaving their children off of the census questionnaire. And we don't know why. So we have made an all-out effort this census to have parents to understand the importance of counting all their children in the census.

14:09 TN: Well, Marilyn that brings up my question. I've heard of specific populations being referred to as "hard-to-count". What is a hard-to-count population?

14:21 MS: Hard-to-count populations are those populations that are traditionally... That have been disenfranchised over the history of the nation, therefore, they have been... People... It's been handed down through the years about different reasons that you don't wanna participate in the census. So minority groups, people with disabilities, they have been traditionally hard-to-count. Mistrust of government, afraid that what they provide to the government will be used against them in an adverse manner. High poverty areas, low educational attainment, immigrant populations, those are traditional populations that shy away from being involved in anything that pertains to the government, and particularly, the census.

15:07 TN: And you said that the disability community is traditionally a hard-to-count community.

15:12 RK: Absolutely. One of the things is the fact that we have to do special outreach because people are saying, "Because of my disability, how is this gonna help me? How is participating in this census really going to help me?" That's what everybody wants to know. "What's in it for me? How is this going to help me, this civic ceremony?" So, we have in the last three census I've been involved in, there has been a concerted effort in outreach to the disability community to raise awareness on the importance of the census. To securing resources over a decade. People with disabilities have children that are in school. People with disabilities of course, need healthcare services. People with disabilities need Medicare. People with disabilities are very concerned about how a construction and planning and having good roads in their places. Very concerned about transportation... Their transportation needs. So our ability to connect with the community to explain the importance of the census, and call it once a decade reset. That all of us get this once a decade reset to chart the course and solidify the direction of that pipeline of resources that we're going to get annually.

16:35 TN: So, does the census actually ask any questions about disability?

16:40 MS: Not on the... Not on the 2020 census questionnaire. We do ask questions about disability on the American Community Survey questionnaire. So, many of your listeners will... I've gotten calls already. There's people who say, "I've got this in the mail. It says, "The American Community Survey", what is that? Should I do that and the census?" And the answer is yes. And there are questions on the American Community Survey about disabilities.

17:06 TN: If there are no questions about disability, then why is it important to make sure the disability community is counted correctly? We talked about "What's in it for us?", but what's in it for you? What happens if we're undercounted?

17:23 MS: One of the things is that... That came out in our summit for people with disabilities that we had earlier last year, representation. And that's one of the things that we wanna press upon people. Congressional representation is the key, is the primary reason we take a census, that's the key. So when people with disabilities go to their congress person, they want to make sure that they are included in that number so that they're getting to represent... The people that represent them. So when they go to their congressmen and say "And we know that our populations are substantial, we live in this area, we've got another congressional seat, and we need some services." But because the numbers are the things that count, because all of us are the same in a census. And all of us are looking to be able to get certain kinds of representation. One of the things that I say, there would not be any minority-congressional caucuses without the census. And most people don't know that.

18:31 TN: So the one concern and you just touched on this a little bit before, but the one concern that we've heard a lot is is that people with disabilities are afraid to fill out the census or may just be a little hesitant about the census because they think that their information may be used against them or that they could lose their benefits.

18:53 MS: No. One of the things is that in some communities, there is a restriction on who can be in that household. Some of them have a person restriction where it pertains to... If you have non-relatives there are gonna be so many, the census doesn't deal with any of that. Because no one sees your information. Therefore, you can be 100% accurate on the count because it's for apportionment. No one, not the city officials, not the code enforcement people. No one. But when you are not counted in a census and your city, or town, or county, or village, is short on emergency management resources or they have to scale back on transportation services, it's because the census numbers do not support the need, which is the basis for the funding formula.

19:51 RK: It's so important as we look at the programs and services that are provided and what's available in the community, knowing that being under-counted or not participating in the census makes it so that we may end up finding reductions to what South Carolina is allocated to use for the public benefit. And I don't think that's anything that the South Carolinian wants. We wanna make sure that South Carolina gets its fair share.

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20:33 RK: We've talked so far about what the census is and why it's important. We've talked about some of the fears that folks may have with participating and I think we put all of those to rest, which is really amazing. So let me... I wanna return to a point that you had made earlier and maybe dive down a little bit deeper. You mentioned that there are more ways than ever in the 2020 census, to complete the questionnaire.

20:57 MS: Yes.

20:57 RK: So tell me... Give us a reminder of how folks can complete the census.

21:02 MS: First, people can complete the census online at my2020census.gov. And you can complete it online in language because this census, we are supporting 11 non-English languages. Or call a toll-free number at 1-844-330-2020. And we'll provide to you, Robbie and Tiffany, a fact sheet that you can make available to your podcast listeners, that will provide them with other information about the census and how to respond, and to ensure that it is accessible for them with the TDD number as well.

21:49 RK: That's great. I think you're really prying for where I wanted to go next with some of the questions that we've gotten, and that is the accessibility of the different formats of the questionnaire and how it's available. So can you comment on how accessible the online version of the census is, for folks who may have a visual disability, and use a screen reader?

22:10 MS: Yes. The Census Bureau's website has to be in compliant with the law, that's number one. Because I'm asked that all the time, "Is the Census Bureau's site in compliant with the law as it pertains to people with disabilities?" And the answer to that is yes, it is. Every other precaution has been taken as well. There's even a Braille of questionnaire assistance guide that we've had in previous census cycles and we will get some in-house that we'll be able to distribute to persons that request them, also for those that have the special printer. They will be able to print that particular Braille guide out and have that guide. There are also some large print questionnaire assistance guides for those persons that may want to complete their paper questionnaire. So we have taken every... We've looked at every conceivable way to ensure that everybody is included in this census.

23:09 RK: Yeah, and that's really evident. I get to ask folks about accessibility pretty often in the work that I do. And if I can ask someone one accessibility question and they tell me about all of the alternative formats for a particular population and they're able to work ahead of me in that way, that's always a really encouraging sign. I did ask that question, knowing the answer. We've had a friend who is a South Carolina constituent, she uses a screen reader, and she kind of tore through her census, got it done really quickly, and then shared one of these questions with us afterwards that has already been answered. But her comment was that it was so easy to use and incredibly accessible, that it was quick and easy for her to do for her family, which is great.

23:55 MS: Yeah. What we really want your listeners to do, is to... We want to become a circle of 10. Once you complete yours, call 10 of your friends, neighbors, and associates and say, "Have you completed the 2020 census? It's important and it's really easy and it's safe." And let's expand our circle of 10, and see how far your circle of 10 extends.

24:19 TN: We're encouraging everyone when they fill out their census to use #morethananumber and #disabilitycounts2020 and share with us on social media that you have been counted, because we want to know that you're filling out the census. But we also want you to tell everyone else that you're filling out the census too, 'cause you are an example to people in your life, and they go, "Hey, you know? I should probably be doing that too. That's a good reminder. Thanks."

24:54 MS: And also, use #2020census so the Census Bureau will be able to pick up on it.

25:00 RK: Yeah, that's awesome. I think as folks complete the census, it's important to tell that story and to have that story spread. So we even talked a little bit about completing the census for someone who may be deaf you mentioned TTY and TDD to make sure that folks can access information over the phone or over the phone lines, if they have a hearing disability. So I think that that's all really, really helpful information. So any listener who has not yet completed your census questionnaire, we're kind of taking away your excuse. It's time to hop to it and get it done. With that in mind, I do wanna ask another question. If someone is going to complete it and they just need a little extra help or a little support as they go through, how can they ask for help?

25:48 MS: Yes, they could call our toll-free number at 1-844-330-2020, and we have representatives that will take the information by phone. You could actually complete your questionnaire by telephone.

26:03 RK: That's great. So don't forget that toll-free number, it's important to ask for help when you need it, and don't use that as an excuse to not get the census done. I do wanna ask, there's just a couple of questions. We're living in really interesting times right now with a lot of risk in the community and practicing social distancing, can you comment have there been impacts to the 2020 census from COVID-19?

26:30 MS: Yes, we paused all of our public contact operations a few weeks ago. And so we are using contacting our partners through social media, the various platforms. We took our staff out the field, so that's been a little different. Also, the online... The self-response rather, the self-response period was from March 12th through July 31st and it's now March 12th through August 14th. That has been extended. But we want people to complete today. We want you to, 'cause every day, every day the response rates are published every day. So the national response rate now is at 48.1%. So you definitely want to... Some of your listeners may have challenges with their friends like I do with my friends. So every day we decide who wins the day, who has the highest response rate for the day. And anybody whose state is like an outlier, we take them out the group. [chuckle] We wanna make it easy for the remainder of us. So they may want to do that. So the national response rate now is at 48.1% as of today.

27:49 RK: Yeah, that's really good to know. And as of today, our record date is April 13th. So as of right now, that's the daily response rate. And it will be different the time that this podcast is released and different a week after that and a week after that.

28:04 MS: Absolutely.

28:05 RK: But it's good to know where we stand. With the traditional idea of census, there's always that image of a census worker going door-to-door and checking in with families on households, is that process going to be different? I know we'd prefer to not need folks going door-to-door and knocking because the census can be completed online and by phone. But is that process gonna be adjusted at all given the coronavirus?

28:33 RK: Well, we have moved that process back, it's been... Normally it would start mid-May. So that operation has been moved back. We don't know when we will start it and the new procedures we have yet to see those.

28:46 RK: Okay. So those are in consideration and I'm glad that the Census Bureau is really thinking through that and watching out for your people and then making sure that your workers are gonna be safe.

28:57 RK: Social distancing is heavily practiced as well as no public contact operations.

29:04 MS: Great. I think it's so important for us to think about what this might look like a few, a couple of months from now or a month from now when we start seeing those fieldworkers out going door-to-door because we can prevent them from needing to come to our door by completing our census today and making sure that our household is counted.

29:24 TN: Correct.

29:26 RK: Absolutely fantastic.

29:27 TN: That is for sure.

29:28 MS: That's what we want everybody to do. And now it's because it's so easy with the options. Last week the households that had not responded received a paper questionnaire. Therefore they have all three options in their heads, online, telephone and paper.

29:44 RK: That's great and that's more than enough for you listeners as you listen at home or as you listen in the backyard or the balcony of your apartment as you social distance. No matter where you are, you can do it right now. You can do it over the internet, you can do it on your smartphone, you can dial the old fashioned way from your phone and make sure that you get the census completed or you can send that questionnaire in in the mail and get it done and help keep a field worker from knocking on your door. I think with all of that in mind, we've really driven home how important the census is and how it directs federal dollars that we really rely on for really important programs and services from transportation to Medicaid and Medicare and snap and tennis and the list goes on and on.

30:33 RK: Making sure that South Carolina is allocated our fair share. We've also talked about some of the fears that folks might have about the census and really laid those aside knowing that the census is simple and it's safe and it isn't intrusive, it's not collecting information that'll make us uncomfortable and a little bit that is collected is also protected. And we've also talked about how accessible it is and how easy it is to get it done and to get it done now. I wanna say thanks to all the listeners that have sent in questions and participated in this process with us. I wanna thank you Marilyn so much for spending this time with us.

31:11 TN: Thank you Marilyn.

31:11 RK: And answering our questions and helping us feel comfortable and confident.

31:14 MS: Thank you for inviting me.

31:16 TN: Yay, Marilyn.

31:20 RK: So glad to have you. So one last note, completing the 2020 census is quick and easy. Do it now. Once you do it, share it on social media. Use hashtags, #morethananumber #disabilitycounts2020 and tell us your hashtag again Marilyn?

31:37 MS: #2020census.

31:39 RK: And share it loud and proud and be counted.

31:44 TN: Able South Carolina is here for you and we want you to be here with us. So subscribe to our email, like us on Facebook. Follow us on Twitter or contact us by phone. You have been parked in the Access Aisle, a production of Able South Carolina.

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In this Disability Service Announcement episode of the Access Aisle, our hosts, Megan Wagner and Robbie Kopp, share information about social distancing and how to protect yourself, your family, and the community from COVID-19. The CDC, SC DHEC, State and Local Governments are the best sources for new information.

Able South Carolina has a great listing of COVID-19 resources available here: https://www.able-sc.org/covid-19/

Disclaimer

Episode Transcript

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00:15 Megan: It has been 10,865 days since the Americans with Disabilities Act has been passed.

00:20 RK: And you are parked in the Access Aisle.

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00:32 Megan: Welcome. My name is Megan and I am a current social work intern at Able South Carolina, studying to get my master's degree at the University of South Carolina. With me today is my amazing supervisor and mentor in disability advocacy, Robbie Kopp.

00:46 RK: Thanks, Megan. Like she said, I'm Robbie Kopp, and I am the Director of Advocacy and Community Access here at Able South Carolina. We are here today to talk with you about COVID-19 and how to better prepare yourself as we see this thing roll out over the next few months.

01:02 Megan: Well, I wish I could say we're in the homestretch of this Robbie, but it seems like everything is just getting started. So, to help all of our listeners sort of navigate this unprecedented pandemic, we have compiled a list of advice that is sent down from the CDC. Before we get into all that, though, I just wanted to take a second and say thank you to all the people out there working on the front lines to keep us safe: Healthcare workers, grocery store employees, garbage collectors, public service agents, and all of you hard working people giving their all so the rest of us can stay safe inside our homes. We cannot thank you enough.

01:36 RK: And it's so important that all of us do our part to help relieve some of the workload for these dedicated workers and make sure that we are staying at home the way that we are ordered to and that we're limiting the spread. The fewer folks that this ends up touching, the less risk there's gonna be in the community.

01:54 Megan: Right, and because there is no current vaccine or medical way to prevent someone from getting COVID-19, the CDC recommends that we all stay inside our house and away from other people until this is kind of all over. There still seems to be some confusion on what exactly social distancing is and is not. Robbie, could you tell us a little bit more about what social distancing is, what it means to do it, and who should be doing it?

02:17 RK: For sure. And first, I really wanna start out by saying who social distancing is for. If you are not sick and you don't have any reason to believe that you've been exposed, you haven't been around someone who has symptoms, of COVID-19, then social distancing is for you. If you think there's any realistic chance that you may have gotten it, then this next part where we talk about social distancing doesn't really pertain to you because you should be completely quarantining or self-isolated. We will talk about what that means.

02:50 Megan: So Robbie, what if I have to leave my house? How should I protect myself from the people around me?

02:54 RK: First, we should not be leaving the house at all unless we need to get supplies that that'll help us stay alive, not just, "I need a new pillow because this one is just not as comfortable as it was last week." But, "I need groceries, or I'm gonna go hungry." And there's a difference between those two. Some other things that have also been allowed so far is some limited outdoor travel on foot. If you're exercising or you're trying to get your cardio in, that has not been on its face banned yet, but we wanna make sure that we're always watching for the newest updates. Like I've said once in this podcast, so far, I'll probably say again, if you feel like you might be sick or you've been exposed to COVID, these steps aren't for you. Please stay inside and limit the spread.

03:51 RK: The biggest feature of social distancing is keeping that six-foot distance between you and the next person near by. If you can keep more space between you and other grocery store shoppers or service workers, even better, but six feet is expected to be the distance that the virus can travel when someone sneezes, or coughs.

04:09 RK: The current guidance from the CDC is recommending that people should wear a cloth mask at all times when they go out in public, like if they go to the grocery store. We should not be going out in public very much at all. This should just be very necessary trips, trips that we can't avoid. And when we take those trips we should make sure that we're doing everything we can to not need to repeat the trip the next day. With these cloth mask, they can be homemade, they can be made with things that you have around your house right now. The CDC's website has some really cool ways to put a mask together and please do not go out and buy the surgical masks or the medical grade masks because we wanna make sure that our health care workers have access to those. Fun fact, my aunt made a few masks for my wife and I, they're really cute and I hope to not need them because my wife and I will be staying in the house as much as possible. But when we do, we have something that is pretty simply stitched together with some cloth and some hair ties and that's all it really takes.

05:14 Megan: I also want to add on to that, Robbie. It's really important that you, when you're using the mask that you wash your hands before and after you take the mask off and this just goes in general to outside of touching your mask, if you go out in public, you should be washing your hands frequently and not touching your eyes, nose, mouth, ears, that kind of stuff with unwashed hands.

05:38 RK: Yeah, for sure and I think one of the things that's really interesting about what the CDC said most recently about masks, is that if, if you don't have any symptoms, you may still be carrying the virus and you may be able to transmit it. So, the mask helps you keep the virus contained to your face instead of spreading it to other people in the community. Other really important things to consider for people with disabilities is how your PCA is gonna provide services. Make sure that you work with your PCA provider, your personal care attendant provider and make sure that they have good COVID practices in place and that you're protecting yourself from individuals who are there to help you but may inadvertently be carrying the COVID virus.

06:00 Megan: We're now gonna talk a little bit about if you are sick and what you should do, if you're experiencing symptoms of COVID-19, which tend to be fever, cough, or shortness of breath, do not go physically into your doctor's office. You should start by giving them a call and describing your symptoms to them and then going from there, we don't want to flood all the doctor's offices with people who think that they might have COVID, especially since we all know here in the South, it is allergy season and pollen is everywhere. So, we wanna make sure that the doctors can do that initial meeting with you over the phone before you go in.

07:04 RK: Yeah, and then an important thing is really following the instructions of your doctor. It's always good to start with a phone call and to touch base and share what your symptoms are and go from there. Many people have been able to recover at home and don't need to go to the hospital at all and your doctor is really gonna be the best judge of that or you need to head to the hospital. If you have a hard time breathing, you feel pain in your chest or you're unable to think clearly or wake up or if you have blueish lips or face, the CDC recommends emergency medical health, making sure that you get dialed in to what you need.

07:40 Megan: But, if you are in any of those situations, you can like Robbie said, recover from home. The CDC has some tips on what you can do to help prevent family members and other people in your house from getting sick too. You wanna tell us a little bit about those? Sorry.

07:55 RK: Yeah, I'm just so excited to do it.

07:57 Megan: I know. [chuckle]

08:00 RK: If you find that someone in your household is sick, whether that's you or a family member or a roommate, you wanna designate a sick room that only the sick person stay in while the rest of the family and pets stay away. If you have a service animal, things don't really change a whole lot for you. You wanna keep that service animal with you at all times and make sure that you're the one who's making sure that service animal is let out when that's needed and being the main contact because there is some question about if someone is sick is touching an animal and then someone who is well touches that animal, can COVID pass. So, we wanna make sure that we're being really intentional with that, whether it's a service animal, whether it's other animals in the house or whether it's family members, we wanna make sure that there's a sick space and a well space and that we're not crossing over as much as can be helped.

08:54 Megan: But if you're for whatever reason not able to create a sick space and a well space, then the CDC asks that you stay away from the other members in your family as much as possible, doing this... In your house, wearing a cloth mask. So, we talked earlier about if you're social distancing and you're not sick, wear a cloth masks only when you're outside. If you are sick and have to be around other people in your house, then wear a cloth mask inside as well, following all the stuff we talked about earlier with cloth mask usage. Try as much as possible and hopefully none at all to make physical contact with anyone and staying at least six feet away from the people in your house at all times.

09:37 RK: Yeah, for sure. So there's kind of that direct exposure from the droplets of sneezes and coughs and how COVID can pass that way but it also can live for a short time on surfaces. So, we wanna make sure that any surfaces that are touched pretty often, like countertops, toilets, sinks, light switches, door handles, all of those things and more, we want to disinfect those regularly according to the best practice for that. There's a lot of different types of cleaners out there. You wanna follow the instructions on that cleaners' bottle. Some sprays may say spray it, let it sit for awhile. Some wipes may say, wipe it down and make sure that it's good and wet and covered and let it dry. Whatever you do, just follow the advice of that cleaner because it's tested to make sure that it does what we expect it to do.

10:30 Megan: Also, if you're sick or somebody in your house is sick, again, I can't reiterate this enough. You wanna be washing your hands as much as you possibly can. So, I'm sure you've seen it everywhere, but we just wanna reiterate it here. Wash your hands with hot water and for at least 60 seconds, or 20 seconds, sorry, for at least 20 seconds or if you're bored of counting to 20, you could sing Happy Birthday two times. There's lots of stuff out there that lasts for 20 seconds that you could try to do to make hand washing more fun. But that's just a huge benefit of... Or not benefit, but it's a huge way of preventing yourself and other people from getting the virus is to keep your hands clean and to not touch your face with unwashed hands.

11:17 RK: Absolutely, and Megan said "60 seconds". If you've got those 60 seconds...

11:21 Megan: Do it.

11:22 RK: And you're excited to wash your hands, don't stop at 20. But please, wash your hands at least 20 seconds. The last thing, I've said it a few times, but I'm gonna say it again, if you are sick, do not leave your house except to get medical treatment and that would be only under the guidance of your doctor. We wanna make sure that Coronavirus kind of stops dead in its tracks and that it's not spreading to other people, and the best way that we can do that is if you're waiting for results, for COVID test results or if you're unsure if you may have it, or if you've been in contact with someone who may have it, that self-isolation, that staying away from others and staying indoors is, it's important for your health, but even more important for the community's health and making sure that Covid doesn't spread and turn into an even bigger problem and a bigger strain on our resources, healthcare resources.

12:21 Megan: Just to kind of piggyback off of that, too, before you stop quarantining, even if you start feeling better, your symptoms start improving, you wanna make sure to call your doctor and talk to them before you leave your house, even if you're feeling great and ready to go, you still could be carrying and you still could pass the virus on to someone else. So just make sure that every step you take is in collaboration with your doctor because they know the best way to navigate all of this. We know this is a scary time for a lot of people, a lot of people, this is the first, most of us, if not all of us have kind of dealt with anything sort of like this. We want you guys all to know that Able South Carolina is here to help. We are still working virtually to ensure that all of our consumers have access to the things they need right now. If you need help please, please give our offices a call, or you can go to our website at Able-SC.org/COVID-19. We have a bunch of accessible resources on there, specifically for COVID or you can use our website to look at the other services that we provide outside of COVID, as well.

[music]

13:44 RK: You have been parked in the Access Aisle, a production of Able South Carolina. Please like and share our content and subscribe for more updates.

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People who live with psychiatric disabilities are often misunderstood, unseen, and dismissed. In this episode of The Access Aisle, MSW Intern Laura Browning and Advocacy Coordinator Tiffany Namey investigate the prevalence of psychiatric disabilities, speak on the difficulty and necessity of disability pride, and dispel some widely-held myths about people who live with these disabilities every day.

Disclaimer

Episode Transcript:

[music]

00:15 Laura: It has been 10,840 days since the Americans with Disabilities Act was passed and you are part in the Access Aisle.

00:24 Tiffany: And you are part in the Access Aisle.

00:25 Laura: Welcome, my name is Laura, I'm an intern here at Able South Carolina, I'm studying Social Work, and I'm going to be a future therapist.

00:34 Tiffany: My name is Tiffany Namey, I am the Advocacy Coordinator here at Able South Carolina. I just wanna make a quick statement. When we were deciding whether or not to disclose our specific diagnoses for this podcast, Laura and I talked a lot about the lack of disclosure and if that meant we had a lack of disability pride, and we have decided not to disclose our specific psychiatric disabilities, which will be the topic of this podcast. We want everyone out there to know that you cannot disclose your diagnosis, whether it be a psychiatric disability or a physical disability, and still have disability pride. You can be proud of all of the evolving you have done and the adapting you have done and the person that you are and the unique skill sets that you have and just being you, and the fact that your disability is part of who you are and still not disclose to anyone you don't wanna disclose to. And that was something that we struggled with yesterday, but that is what we decided and so we wanted to share that decision with you. [chuckle]

02:11 Laura: Absolutely, Tiffany and I, we're both really excited to be here and hosting this episode and we do both live with psychiatric disabilities. And disclosure is power, to be perfectly honest. No one needs to know about your disability diagnosis, except for you, your doctor and your boss, if you're looking for accommodations.

02:28 Tiffany: Yeah.

02:29 Laura: Well, in case you haven't guessed, our topic for today is psychiatric disabilities. We're so glad that you're listening today, and I hope you'll check out our previous episodes and our content from 2019. Make sure you subscribe to the Access Aisle, so you can get updates and podcast episodes as we release them. This topic really stuck out to us, because so-called mental illness is often not considered a disability by society at large. For instance, I really didn't know that that "mental illness" was a psychiatric disability until about a year ago. I didn't grow up hearing that terminology ever and I knew I needed accommodations, but I didn't know that's what they were and that you could even go about asking for those things.

03:10 Tiffany: I have multiple disabilities, I also have physical disabilities as well, and all of the disabilities I have are invisible disabilities, every single one of them, and I didn't realize as a person with invisible disabilities that any of my disabilities were disabilities until much later in life, because all of my disabilities manifested in our lessons and I have struggled a lot with recognizing that I need accommodation, so I think that is something that is very common. One of the issues that I see, is that despite the fact that the disability community is built on a cross-disability model, that we're all supposed to be here for each other, building power within our community and we're all supposed to be recognizing the fact that we may have different disabilities or multiple disabilities, we still have this kind of ingrained, inherent bias that there is this ranking system and it's a false ranking system, but it says, "Well, maybe my disability isn't quite as bad as their disability or maybe that person's disability is just a little bit worse than that person's disability."

04:41 Tiffany: And I think that is such a false and damaging perspective to people with psychiatric disabilities because it makes cognitive disabilities and physical disabilities "worse" than invisible disabilities, because they're something that's tangible, they're something we can see. And no one's disability is worse or better than anyone else's, it's about whether or not we can get the accommodations and the access that we need to be the people that we are, doing the things that we are supposed to be doing in society, based on what we want and need to be doing.

05:29 Laura: That's an important point because psychiatric disabilities, because you cannot see them and because they really exist on such a spectrum, it tends to be subjective and if you've never experienced it, you don't really get what it's like, which is tough for us to explain, or try to get help, or even just express ourselves and receive understanding. So let's go ahead and start dispelling the myth that people don't have psychiatric disabilities. [chuckle] For instance, Johns Hopkins tells us that one in four American adults lives with a diagnosable mental disorder or psychiatric disability every year. If you sit in a little cubicle group with four of your co-workers, one of them's probably got a psychiatric disability.

06:09 Tiffany: That's one person at the table when you go out to dinner.

06:12 Laura: Absolutely.

06:13 Tiffany: Yeah?

06:14 Laura: It's not uncommon, that is staggeringly common. [chuckle] We're everywhere.

06:19 Tiffany: About 18% of people ages 18 to 54 in a given year have an anxiety disorder. And anxiety disorders include panic disorders, obsessive compulsive disorders, Post-Traumatic Stress Disorder, generalized anxiety disorder, and phobias.

06:42 Laura: We've also got bipolar disorder, one of the more prominent disorders in the United States, it affects over 2.5% of American adults, and 9.5% of American adults live with a depressive disability, like major depression, persistent depressive disorder, mood disorders. One of the least understood. We've got mood disorders, personality disorders, other emotional and psychiatric disabilities, they're incredibly common. People do not like the word personality disorder.

07:08 Tiffany: Now, I remember the first time I heard that I was like, "There's a disorder with your personality? That's nice." You know?

07:18 Laura: It really does strike fear into some people's hearts.

07:20 Tiffany: Yeah, it's a terrible phrase.

07:21 Laura: Even the people... Especially the people who are diagnosed with it, they come into a diagnosis with just incredible amounts of fear and self-shame because you've really been condition to be afraid of like, "Oh my God, who am I now?" So personality disorder, not the most apt name.

07:37 Tiffany: And that's why we're trying to say psychiatric disability because it is a disability.

07:42 Laura: It's not the medical model version of an innate flaw in an individual. I know one specific personality disorder, Borderline Personality Disorder, has three million people in the United States living with it at any given time. And going off of the high rate of personally disorders, they also have one of the highest suicide rates of all psychiatric disorders. In the United States alone, the suicide rate for borderline is 10%. If you had a physical disability or a physical illness anything that had a one in 10 chance of you dying from it, you would hear about it all the time.

08:18 Tiffany: Yeah, that would be an epidemic.

08:19 Laura: It really would be.

08:20 Tiffany: But most people who die by suicide have a diagnosable mental disorder, and most commonly a depressive disorder or a substance abuse disorder, but people with mood and personality disorders are also one of the highest rates of suicide. And I think that's 'cause they feel a lot of really intense emotion, but also because they're not as likely to disclose as a lot of other mental and psychiatric disabilities. And see right there, we're conditioned to use so many words. Right now, I'm personally going through an issue where I'm trying to stop going, "That's crazy, that's insane."

09:11 Laura: Me too.

09:11 Tiffany: But I say it all the time. These are all social norms now that we're used to saying things to disparage people with disabilities and...

09:22 Laura: Even the people that have the disabilities themselves, we're just... Ourselves.

09:24 Tiffany: Right, we disparage ourselves. I think that that's part of the problem.

09:32 Laura: Yeah, one big thing that we live with as having psychiatric disabilities, is we just face some very pervasive and wrong assumptions about ourselves everywhere we go. Specifically, I'd like to focus on the stereotypes that follows in the workplace, in our personal relationship and like social lives. Number one, I would say, is that we need to be spotted and dealt with. I did some quick research just to see what the public perception is or to find it in writing, how to work with people who have mood disorders in the workplace, or how do you build relationships with people who have psychiatric disabilities, and all the more how to spot someone with a mood disorder, how to deal with employees that are unregulated. And that hurt. I'm certainly not unused to it but it's difficult to feel accepted and encouraged to do your best when there are a lot of workplace stereotypes about you being malicious, or needing to be controlled, or being a detriment to the productivity of the office that you need to be dealt with and put back in the line.

10:40 Tiffany: I know for me that's something that I live in fear of because not only as a person with epilepsy do I have to worry about my physical disability distracting from the productivity of the workplace, but when I'm having symptoms from my psychiatric disability, it can also be disruptive. I know it can be disruptive, but I also know from a disability rights model that we tell people that the best way to learn how to relate to people with disabilities is to get to know people with disabilities. And when I'm having a hard time, when I'm having a moment where I'm having my symptoms, that's when you're getting to know me, 'cause that's me. It's who I am, it's a part of my life. I don't think that's having to deal with me. I think that's getting to know how to work with me. I read a Harvard medical school study, I think I shared that with you.

11:44 Laura: Yes.

11:46 Tiffany: It said that 60% of Americans thought that people with schizophrenia were likely to act violently towards someone else, and 32% of people thought that major depression, that those people were likely to do it as well. Now, if you think, one in four people has a mental illness. That's one person sitting in the booth, getting chicken wings with you. Now they're spontaneously gonna break out and be dangerous, right? People are living in fear of that happening. That same study found that 31% of those people also lumped in psychiatric disabilities with substance abuse. So not only did they think that we were violent, but they also thought that we were using drugs or using alcohol. And while that may be something that is happening, it may also not be. So it was just assumed, and they assumed that we were not going to treatment and we weren't taking our medication.

13:01 Laura: And that last one is really the one that resonates with me here. The biggest point that I want you to take away from this podcast episode is that people with psychiatric disabilities are capable adults. We take our medication, in most cases we go to therapy, we have our best interest at heart and the best interest of those around us that we care about. We're not helpless children and we know ourselves best. And just like anybody else, we try to meet our own needs, and get them met and do the things that help us function the best and build solid relationships and produce good things. So we don't need to be coddled or feared. We're worthy of respect and healthy boundaries just like anybody else, disorder or no. So thanks for bring that one up. Or one of the worst things or the most difficult parts of having a psychiatric disability, especially in the workplace, is dealing with the effects like disproportionate emotional reactions, big emotions if you'd wanna say. And that can be a real barrier to functioning in the workplace with other people who don't understand psychiatric disabilities. Any workplace interaction that might mean nothing to someone without a disability can really weigh on someone and distract a person with disability for hours.

14:20 Tiffany: It can and I think that's kind of what I was saying before about getting to know me. But I remembered reading an article a while back about being on a political campaign and there was some campaign manager and she was talking about whether or not it was okay to be a strong woman and cry. I went back and I tried to look for that and I couldn't find it, but what I did find literally terrified me. There was a woman from UC Davis Graduate School of Management, and she did a study, and NBC published an article about it called Is It Okay to Cry at Work? Now, I'm a workplace crier. It happens to me. I cry when I get frustrated, I cry when I get angry, I cry when I don't understand something, and I try really hard not to, but you'll see that I'll physically start shaking 'cause I'm trying not to cry and it will come out.

15:19 Tiffany: I'll go and I'll hide in my office or somebody else's office. And the article said that people like me were labeled by their co-workers as weak, unprofessional, unqualified and manipulative. They're considered to be treated with kid gloves by their colleagues and bosses, who are afraid to upset them or worried about the employee's ability to be tough. Another study that was referenced in the article found that tearful people, while seeming warmer, were less competent. Their bosses and fellow colleagues considered them less competent, simply because they cried. An article in The Atlantic that referenced the same UC Davis study interviewed 16 high-profile business women. All 16 of them said that showing strong emotion was a bad thing. The CEO of the Girl Scouts was one of those 16 women.

16:35 Laura: Ouch.

16:37 Tiffany: That says something right there. We're teaching young girls that having emotion is wrong.

16:43 Laura: Without a tweak.

16:45 Tiffany: And the president of CBS described crying as giving away your power.

16:55 Laura: I don't know about you all but crying is the number one step on my self-care plan if I'm feeling bad. That is a powerful self-care tool, you all.

17:03 Tiffany: I know people may label me as attention-seeking, and I know that's something I've been accused of my whole life...

17:09 Laura: Me too.

17:09 Tiffany: Since I was a little girl, of being attention seeking. Honestly, the last thing I want attention for is crying at work, [chuckle] or really crying anywhere, showing emotion anywhere. When you're crying at work not only are you afraid of attention, but you're afraid of attention and then the memories of that attention later that your colleagues and your bosses will have.

17:31 Laura: You're having difficult emotions at work is just part of the disability. We don't have them by choice and the consequences are real, along with being called attention seeking. People find these displays of emotion, even if we control them, even if we can hide our office and wait it out and use our tools to get past them, they can really change people's perception of us in the workplace as being impulsive, erratic, attention-seeking, incapable of making relationships. It really can be very alienating when people don't understand that big emotions, as a part of the mood disorder or depressive disorder, an anxiety disorder, any sort of psychiatric disability that comes with inflated and disproportionate reactions, that it's not a choice, there are symptoms of the disability that pervades our life.

18:18 Tiffany: And it doesn't only impact you in the work place either, when I have chosen to disclose or I've tried to explain to people that I've been dating, I have had people refuse to date me outright because they've understood my diagnosis to mean something that it didn't, or they have had bad experiences with past partners, who have had similar diagnoses, but you've had bad experiences with partners who didn't have similar diagnoses. So that would be like saying, "I'm not going to date any more women because I had a bad experience with a person who did not have a psychiatric disorder. So I'm not gonna date anyone who does not have a psychiatric disorder."

19:09 Laura: And that is just, it's one of the feared consequences of disclosure, which is unfortunate that we really do have to fear disclosure or be so careful with it.

19:17 Tiffany: Yeah.

19:17 Laura: And it's important that we protect ourselves in who we disclose to but it's still a barrier that we face in that there's always a risk in the workplace, in personal relationships of when you disclose of being rejected and shamed and that comes from not understanding what these disabilities look like, at the fact that they are disabilities and what they're born from. Many people who live with psychiatric disabilities, as my mental health professional says, they come by it honestly. Certain mood disorders are born directly out of trauma. They're research based to be survival skills, based in traumatic experiences that really helped someone survive in their past, but now just don't fit the circumstances anymore.

20:00 Tiffany: Right.

20:00 Laura: In my opinion, I think a psychiatric disability while it may be called a disability really shows our ability to adapt, shows our capability to be full humans who can thrive in their environment and just have a strong sense of fitting in where they are and being able to work with these disabilities, whether working in an environment, like in a workplace or just relating to other people, the qualities at the core of all of our disabilities are strengths really, and our ability to work with those disabilities is something to be proud of. Oh, do you have anything to add?

20:38 Tiffany: No, I was... It just made me start thinking of just kind of the beauty of neurodiversity, like we have... We just have this wide spectrum of neurodiversity in the disability community, whether it be from cognitive disabilities, or neurological disabilities like epilepsy or psychiatric disabilities. It's this wonderful rainbow of things and I think... I like to say unique skill sets all the time, but I think our unique skill sets or what we bring to the table, and you were just talking about that and it was just making me smile [chuckle]

21:20 Laura: I'm glad. And so just to reinforce we are everywhere. People with psychiatric disabilities are anywhere that people without psychiatric disabilities are. There are so many of us in the work place, and as I mentioned earlier I didn't grow up even into my late adolescence knowing that psychiatric disabilities are actually considered disabilities and have accommodations and have pathways to recourse and assistance and support, and I want all y'all listening to know that there are accommodations that you can rightfully ask for in your workplace and anywhere else you might... And in your education, especially, but anywhere you might need some support. I know a couple of the biggest and most prevalent psychiatric disabilities are depression and anxiety and some of the main symptoms of those are memory loss, difficulty focusing, and stress intolerance, which can be tough to navigate in the workplace. Okay, so we've got this resource it's called A-S-K J-A-N, askjan.org. It's the Job Accommodations Network. You can search A to Z through your disability and find reasonable accommodations for your job. If you, like me, had no real guidance in what a reasonable accommodation for what you need is that is just the number one resource to go to. I cannot recommend it enough.

22:46 Tiffany: I looked at it yesterday for the first time. It was pretty cool.

22:49 Laura: Yeah, so if you look down... If you are living with anxiety or depression, you're having trouble with memory loss, stress intolerance. Some of the reasonable accommodations that we've found on Ask JAN were having some extra time on projects or deadlines, getting break reminder software on your computer, having access to extra training refreshers, getting checklists along with deadlines and even using form generating software, and these are all things that you could talk with your supervisor about that could be provided through your company, or just worked around into your daily life as an employee with very little skin off of anybody's nose, and the big ticket here, if you have trouble with any sort of psychiatric disability that makes controlling extreme emotions really difficult for you, as a part of your disability, you are completely within your rights to talk to your boss about having a flexible work schedule, maybe having the ability to take short breaks, or telework kind of as needed because your psychiatric disability's symptoms are just as debilitating when they crop up as any physical disability symptoms.

23:49 Laura: I know, for one, when I'm at work it helps me a lot to have a private space to do my work. Working in a cubicle means I get incredibly distracted. I get overwhelmed by all the chatter happening and just by the conversations and it really gets to me and makes it hard for me to control my emotions sometimes. So having an office space or a white noise machine or some sound canceling headphones really just eliminates that problem. Other people might need a support animal or access to counseling or therapy through their workplace, and having one-on-one time with your supervisor with a really encouraging attitude. But some supervisors don't have a very open attitude but many, many do. If you talk to your supervisor and say, "Hey, I need you to encourage me to tell you when something's wrong, and when I do, please, I need you to react positively, so we can work through this together."

24:21 Tiffany: And just remember stigma is very alienating. It's difficult to have disability pride when we're frequently rejected and shamed for acknowledging our disability. I know day before yesterday I had a moment and I said, "This is not a disability pride day for Tiffany."

[chuckle]

24:21 Tiffany: But don't let stigma stand in the way of asking for what you need. You don't have to disclose to communicate with your friends and your family what reasonable accommodations you may need from them, but don't live in fear of saying, "This is what I need to make the world more accessible for me."

25:27 Laura: Exactly. Tiffany that was a seriously great point because here at Able, we really believe that people with disabilities have all the tools that they need to speak up for themselves and be self-advocates and ask for what would help them the best. Someone with a disability knows themselves better than anybody else ever will. So if you need something you can ask for it. You need to be able to identify what the problem is, what's gonna help you solve it, and be able to say it, and we know that you can.

25:54 Tiffany: You know what that reminds me of?

25:56 Laura: What?

25:57 Tiffany: Advocacy Day.

26:00 Laura: Yes. You know best.

26:00 Tiffany: Advocacy day is on April 1st, and...

26:04 Laura: Because disability rights are no joke.

26:07 Tiffany: Disability rights are civil rights.

26:09 Laura: They are.

26:10 Tiffany: That's true.

26:11 Laura: Like human rights.

26:12 Tiffany: Yes. We are gonna be gathering on the north steps of the South Carolina State Capital and we're going to be talking about that and more and having a bunch of fun doing it. So I hope that all of you listening out there in podcast land will come and join us for Advocacy Day.

26:34 Laura: Yep, go ahead and head to our website, able-sc.org to register for Advocacy Day and while you're there you can also follow us at Able SC on Facebook, Twitter, Instagram, and on LinkedIn if you wanna get fancy about it. Our website always has resources for you to dig in to volunteer and to plug into everything that we have going on to advance disability rights here at Able SC, and also look out for content in our hashtag access in SC for a positivity campaign and share some advocacy actions and updates leading up to Advocacy Day.

27:09 Tiffany: Awesome. Well are you ready?

27:13 Laura: I am.

27:14 Tiffany: Okay. You have been parked in the Access Aisle brought to you... [chuckle]

27:16 Laura: You have been parked in the Access Aisle a production... [chuckle]

27:22 Tiffany: A production of Able South Carolina.

27:26 Laura: Production of Able South Carolina.

[music]

View Details

New year, new plans for disability rights!

Our co-hosts for this episode, Robbie Kopp and Sarah Nichols, review some of the highlights from 2019 and drive home the ways to get plugged in and participate in disability rights in 2020. It's going to be a big year for the disability community in South Carolina as we celebrate 30 years of the Americans with Disabilities Act, further competitive and integrated employment, and so much more!

To take action: bit.ly/ablescaction

Disclaimer

Episode Transcript:

00:00 Robbie Kopp: It's been 10,777 days since the Americans with Disabilities Act was passed.

00:06 Sarah Nichols: And you are parked in the Access Aisle!

00:09 RK: My name is Robbie Kopp.

00:11 SN: And my name is Sarah Nichols, and we are your co-hosts for this episode of The Access Aisle.

00:16 RK: Welcome everyone, and happy 2020. This is our first episode of the year, hope that you'll go back and check out our content from 2019, and that you'll subscribe and get updates as we release them for The Access Aisle.

00:29 SN: Yeah, we've got a lot of good stuff on there. So today we're gonna be taking a look back at 2019, and we'll be looking forward into the new year. 2020 is a very big year for a lot of different reasons. We have the census, we have the presidential elections and we have this 30th anniversary of the ADA. Can I get a woop woop?

00:49 RK: Woop woop.

00:50 SN: And we have very ambitious goals for this year. Right Robbie?

00:53 RK: Absolutely. So right at the start of the year we released our legislative agenda, we're introducing several bills with our state legislators and senators, and we can't wait to get you listeners involved. Let's not get ahead of ourselves, let's look back at the highlights of 2019.

01:14 SN: Well, what would you say were some of the highlights from this year?

01:19 RK: I don't know, there were so many things that were a really big deal.

01:23 SN: I was hired. So obviously, that's a big one. But maybe more importantly, some might say, Able South Carolina celebrated its 25th anniversary. So we've been empowering independence for people with disability since 1994.

01:39 RK: That was a long time ago, and what a half century it's been. 2019 alone, so just one year, provided 11,880 services to individuals with disabilities.

01:50 SN: And we hope to increase that number in 2020. And so looking for a more national perspective, I know one bill that received some attention was the Raise the Wage Act. It received a lot of attention for its potential to increase the minimum wage to $15 an hour. But it would also do something very important for people with disabilities, and that is ending subminimum wage. Robbie, do you wanna explain what that is for our listeners?

02:17 RK: Absolutely. I think what's really interesting is Raise the Wage Act, when it first came through. The House got a lot of attention but didn't really get a whole lot of attention for the huge impact that would have on subminimum wage. So taking a step back towards what subminimum wage is, right now as the rules are written, it is allowable for organizations that get a special certificate to pay people with disabilities less than the minimum wage. So Sarah I'm gonna put you on the spot, how old do you think these rules are?

02:47 SN: I would guess, 75 years.

02:50 RK: 75 years, you were pretty close.

02:52 SN: Nice.

02:52 RK: Really stinking close, too close for me to do the math on. But really, the rules for... We call it the certificate 14C, it's part of the Fair Labor Standards Act from 1938. Because we should follow every 1938 rule in 2020.

03:09 SN: Nothing's changed since then.

03:12 RK: No, just about everything has changed, so I think it's really fascinating that we continue to try to follow something that maybe had some reason back in the past, but really makes no sense at all.

03:26 SN: We have to value the work of people with disabilities by paying them fairly.

03:29 RK: One of the things that I really hate about the subminimum wage conversation is that we find ourselves advocating for the minimum for people with disabilities. Can't even count on minimum wage. And minimum wage isn't high enough as it is. I think, in addition to the really devastating impact that subminimum wage has on individuals is the damage that it does culturally. Because subminimum wage exists, oftentimes employers expect that they can get away with less or paying less for people with disabilities, that devalues disability experience in innovation and it really just doesn't make sense.

04:14 SN: It doesn't. And that brings us to one of the big targets that we're working on at Able SC and through the Hire Me SC campaign. And that is supporting Employment First, which is competitive and integrated employment for people with disabilities. Do you wanna bring our listeners up to speed on what happened with Employment First in 2019 and where we might be going with it?

04:38 RK: Absolutely. So I'm gonna actually go back out of 2019. In 2018 we had been advocating for a bill that would give some clout to an organization, a small commission that would provide input on disability employment in South Carolina. We got all the way to third read on the Senate floor after it made it through the House, and guess what? There was a floor amendment. And the floor amendment changed the bill into a study committee instead of a commission, which functionally may not sound like all that big a difference, but it was a really big difference. So it did pass as a study committee which at least that happened, that is good news. The study committee convened and got together. Our executive director was part of that, Kimberly Tissot was on that study committee along with Mandy Powers Norrell, Representative Mandy Powers Norrell, and a few other folks. And they put together a comprehensive report on a snapshot of disability employment in South Carolina, and that report was released last year in 2019, in May and really has some huge highlights.

05:51 SN: It sure does. Disclaimer, I have not memorized all of this but I happened to have some facts before me here that I can share with you. So this is a very important report because it's really establishing why we need Employment First and competitive integrated employment for people with disabilities. So first, it looks at how South Carolina is behind in some ways. So currently out of the 727,000 South Carolina residents who have a disability, 67% are unemployed, which means that South Carolina has a sixth highest unemployment rate for people with disabilities in the nation.

06:31 SN: And that's the list that we don't wanna be at the top of. So this report also highlighted some states that have become a model for Employment First legislation, because if we wanna change things, we wanna see how... What's been successful in other states as well. And what they found was that 32 states have already adopted policies supporting the employment of people with disabilities, and it looks slightly different in those different states, but it's in the same common principles. But unfortunately, South Carolina is not one of them who has adapted this, so I don't know, maybe 2020 is the year. But Robbie, what do you think a model Employment First State might look like?

07:08 RK: There are so many things that states can do to further Employment First. And Employment First is really that idea that for serving folks with disabilities, the first and preferred outcome is competitive and integrated employment. So every one of those words packs a punch. We wanna make sure folks are working, shoulder to shoulder with people without disabilities, and that they're getting paid a fair wage, making the same as their colleagues and co-workers in the field. So what we see as really positive steps towards that is the state, potentially as a model employer, so here in South Carolina, the state has purview of over about 92,000 positions across state government and through state government contracts, which is a huge number. If we found that we could be inclusive in hiring 92,000 positions in, and with representation in every single county, that could have a huge cultural shift. We also know that there's a lot of service providers that have... That they answer to state government in some way, and really making sure that those service providers are pushing towards competitive and integrated employment, not sheltered workshops, not enclave employment, not contracts they have with companies so that they can do the work off-site and pay people pennies on the dollar.

08:27 RK: It's not what we're looking for, we're looking for competitive and integrated employment. There's a few challenges that we've gotta continue to address in South Carolina. We don't have any statewide incentives for hiring people with disabilities, we don't have good data on what our utilization rates are right now, which I think is a huge problem. We don't know if we're doing well or poorly, based on employment data. What we do know is that, from demographic data, about two-thirds of folks with disabilities in South Carolina aren't working right now. And that's not where we wanna be, especially as... The last number, I checked this out a couple of days ago, the last unemployment number for South Carolina, the unemployment rate 2.6% in October, which is... I don't know that I would have ever expected it to be that low and it's probably gonna end up getting lower over the next few months as well, but knowing that two-thirds of people with disabilities that are working age aren't working right now, there's definitely a clear gap here.

09:30 SN: 'Cause if you put yourself in the perspective of a business owner or an employer, you might be hiring for certain positions 'cause you're trying to grow your company, and you're having trouble actually finding anyone to fill those positions because the employment rate is so high, or the unemployment rate is so low. So you have a problem there is that you need good candidates to help make your company better and you're not finding them, well here we've just perfectly listed, there's this huge untapped workforce of people with disabilities who... They can work, and they want to work, often they're seen as incapable of doing the job, or the ways that they might do something differently, is perceived as not being able to do it correctly when that's just not true, or they might have the perception that they don't want to work, but that is very often not the case, and it's the perfect solution to the problem of the labor shortage that we're currently facing.

10:21 RK: Yeah, and we've talked some about employment in a previous podcast and we really had kind of a personal spin on that, from a colleague, Cali Sandel and what her experience has been on employment. So feel free to listen back to that podcast episode. Also, I think it's super important to think about where we're headed. So with employment, it's a fairly complicated problem, but the math just makes sense that employing people with disabilities is what should be the norm, and I think that that math kinda puts pressure on employers for us to get there. But really I think there's more room for us to understand what the particular pitfalls are in South Carolina, which is why I'm excited in 2020, there is legislation that's been introduced that would set up the Employment First Commission, as we had hoped for the year before last, I think being able to have the study committee and have a study committee report and have some of the problems clearly laid out gives us shoulders to stand on, as we address employment barriers in South Carolina. I would say employment of people with disabilities is a non-partisan issue, and we're super excited that out of the gate, there is bipartisan support. The two sponsors are Representative Collins out of Greenville and Representative Powers Norrell out of the Lancaster area. So we have folks on both sides of the aisle that are really wanting to address disability employment gaps.

11:55 SN: Because this is an issue that impacts everyone, it also benefits everyone, if it's integrated. So the name of that bill is the Employment First Initiative Act and the current number of the bill is H4768. And if you are listening to us right now and you're thinking, "Yes, that's great. People with disabilities can work, they wanna work. How can I help?" You might be asking, well, one great way to do this is by contacting your representatives and letting them know about the issues that you care about. But more on that later, we are also working on two other bills that have not yet been introduced, but will be soon, which are the Disability History and Awareness Month Bill and The Supported Decision Making Act. Robbie, aren't you excited for these two?

12:42 RK: I'm excited for both of these, and Sarah, you just mentioned contacting your law makers and being part of that process. You're not alone if you're thinking about doing that so we're gonna be releasing a podcast that kinda walks you through the steps, how do you make a relationship with an elected leader. So more to come, don't wait for us but if you feel like you need a little extra support there will be a podcast episode coming on that topic specifically.

13:08 SN: Absolutely.

13:09 RK: But let's talk a little bit about the other legislation that we're gonna be angling for in 2020.

13:16 SN: Yeah, so I've been really excited about the potential for a Disability History and Awareness Month that is established within the schools. So I can only speak for myself but I know that as a student going through the public school system in South Carolina...

13:31 RK: Public school yehey!

13:32 SN: Public Schools. I never learned about disability history or rights and even when we did learn about historical figures who had a disability like FDR for example, that was never actually brought into the conversation. So this is something that a lot of us who are even now integrated into the movement didn't learn about until much later in life even if some of us had disabilities and didn't even know it.

13:56 RK: I think the biggest takeaway from me, from public school and FDR was how much he had to hide his disability so if there's one takeaway from a leader that has a disability and that one takeaway is that they had to hide, that's just not... Not a great sign. I think there's so much more that we can do around disability awareness and really touching the historical aspect of that.

14:20 SN: And teaching about disability history there's so many benefits to that as well beyond just being aware of your own history.

14:29 RK: Well, nice yeah. I think when once students with disabilities were able to see a role model, someone that they can look to and identify with and see, "Hey, this diagnosis or whatever is going on with me isn't the death sentence that my doctor said it is." or "It isn't the the death sentence that my school guidance counselor thinks it is." I think that's just hugely important. We have historical figures from a lot of different places, a lot of different walks of life that have experience with disability and having those role models are hugely helpful and then I think just the disability rights movement itself and seeing the disability community rise up and organize and get connected with other rights movements and share in struggle and host sit-ins and chain wheelchairs to public transit I think it's so important to see that disability access is something that we have to fight for, but there's also the success that we have had in disability rights and making sure that we're kind of standing on those shoulders, we're about standing on shoulders today.

15:43 SN: Who are you stepping on Robbie?

15:45 RK: I don't know, but being able to build on that work and legacy and really that is a huge part of 8830. We do a lot of just basic disability sensitivity training and when I'm providing that training to pros in the field I always ask, how long people with disabilities had equal rights under the law? And I hear all kinds of things and usually it's somewhere in the '60s or the '70s but the truth is the struggle for access has gone on much longer than that and the biggest win of that movement with the Americans with Disabilities Act isn't that old from a historical perspective so we've...

16:26 SN: Only 30 years ago.

16:27 RK: Only 30 years. So we've got to continue that work in progress and you can't continue on it if nobody ever tells you that it happened.

16:34 SN: Exactly and we are lucky that we have Women's History month, African-American history month, and all these great things so that we really learn about leaders in these movements, in these marginalized communities and we just want disability history to be included in that and taught as well. I don't think we mentioned this but it's also learning about this is really great just for fostering individual disability pride, it can even help decrease bullying around disability in schools because for people who do not have disabilities who might either be unsure of how to approach a person with a disability just 'cause they've never been taught about it, this kind of helps bridge that gap and just really fosters more understanding in an age where kids are really trying to learn more and just understand the world and everything that they're seeing.

17:28 RK: Yeah, and I think once we talk about that personal perspective, being able to see where you fit as a person with a disability historically and what you've had to fight for, I think the level of empowerment that brings is really closely related to this supported decision-making idea that we're trying to press legislatively this year as well. So right now without an alternative, a recognized alternative to guardianship, a lot of families and a lot of school personnel and doctors feel like if I'm involved with a young adult with a disability the only option for me is to get a guardianship when they turn 18.

18:06 SN: Let's pause for a minute there and let's explain what guardianship means. There is a bunch of different types of guardianship and it can look different ways but let's just...

18:16 RK: Let's keep it on the simple side and we can dive into this issue...

18:21 SN: In another podcast, so keep listening.

18:22 RK: With another podcast, or with other content that we can host. So in broad strokes, the idea of a guardianship is something that is court-decided, and when someone has a guardianship, it basically takes away their legal ability to make decisions for themselves in some cases, that even includes the right to vote. So it can be incredibly limiting where an individual can't sign their own checks because that's signing a legal document, they can't sign other paperwork, disclosures, all kinds of things, and they're really reliant on this person who is an appointed guardian to make those legal decisions for them.

19:06 RK: Once someone is in a guardianship, the only way to get back out is through another lengthy court process. And what we're seeing is if there's an alternative that could be recognized legally in South Carolina as a way to support the decision-making people with disabilities, then maybe people wouldn't be funneled into guardianship as often as we see right now. So that's really the focus on supported decision-making. We... Supported decision-making is a recognized term. You may see SDM for short. What we're going for with supported decision-making is really just a legal recognition of how everybody makes decisions anyways.

19:42 SN: Yes. And we know that parents or guardians, when people are under 18, are really trying to find the best options for their youths with disabilities, but they might not always know what all of those options are. And supported decision-making is just another great option to have. It would allow people with disabilities to still be in control of their own lives and their own decisions while still having a trusted group of professionals and family members in place to help guide them in their decisions. 'Cause that's how everyone makes decisions, right?

20:17 RK: For those listening, if you've made a big financial decision, a purchase of a car, a house or anything like that, I'm sure you asked some experts that you trust, either about houses or cars, or finances or all of the above.

20:30 SN: Yeah, I know I consulted a lot of people before I decided to adopt a dog, maybe even more people than I needed to, but it was a big decision and I wanted to make sure that I was committing to something that would turn out well [chuckle] and would be good for me.

20:41 RK: Absolutely. Well, that's so much of what supported decision-making is. It's having that circle of trusted advisors and allies and keeping the individual's ability to decide for themselves completely intact. So we'd love to see recognition of supported decision-making as an alternative to guardianship in South Carolina.

21:03 SN: We sure do. So that kind of covers our main legislative agenda for 2020. So we talked about employment first, disability history and awareness, and supported decision-making. Of course, there are several other things that will come up in the course of the year that we might support and share information about, but this is kind of the crux of our 2020 year and what we're gonna be taking action on a lot.

21:29 RK: Yeah, these are state issues. So on the state side, we have already released a summary overview of our legislative agenda, and we'll share that wherever you get your podcast, check back at the Podbean website, and also on Able SC's website for each episode listing where you can get a link to that targeted action. Because right now you can fill out a very simple form, contact your lawmaker and let them know that disability rights are important to you, and that you want them to keep an eye out for employment, supported decision-making and disability rights history integration into education. So get involved.

22:08 SN: Yes. Yes, and I love this system so much because it's so simple and it kind of takes some of those lengthy bureaucratic steps out of the process for you. If you are listening right now and you want to jot down a quick link, I do have a shortened bit.ly link for you. So I'm gonna say that, but we will also link it down below in case you didn't catch it. So the link would be bit.ly/ablescaction. If you enter that in, it'll take you right to our form where you just put in just a little bit of information and the website will identify your state representative and senator for you, so you don't even have to go in knowing who those are, but you will when you leave. And they'll provide you... We will provide you with some talking points so you can customize your message but still have some guidance on what you might wanna say, and then you email it out to them and you're done. Easy-peasy.

23:06 RK: You can also tweet it. So the platform will walk you through on how to tweet the action that you took, and even flag your lawmaker and make sure that they're aware of what we're looking for in 2020.

23:19 SN: 'Cause some of these lawmakers do like to be active on Twitter, and it's a way that they engage with their constituency. So that's sometimes a way to get a faster response than via email, but I think both are very important. And social media is also a great way to encourage your friends to also take action. So now that we've covered our main goals this year, what can we look forward to maybe on a larger scale? [chuckle]

23:43 RK: We know there is a ton of content in this podcast episode, so I hope that you will take the time to listen, re-listen, share...

23:51 SN: Take notes.

23:51 RK: Take notes, share it with a friend, talk with a friend about it after they get to listen. But there's really a lot going on. So we've covered the state legislative agenda. Now I wanna share with you some of the big picture, a few federal issues that are going on right now so that we can be aware and be active with that. First is we're gonna be celebrating the 30th anniversary of the Americans with Disabilities Act.

24:15 SN: Whoa!

24:15 RK: Yeah! The ADA is huge. It is a piece of civil rights legislation focused on disability access that covers employment, it covers governmental programs and services, it covers public places, like private businesses, movie theaters, restaurants. It also covers telecommunications and protects people when they exercise their rights under the ADA. So it's really monumental, and it's so important that we celebrate it. I wanna share too that it's especially important that we celebrate it and the people know that we're proud of the Americans With Disabilities Act, because it seems to be under almost constant assault. Right now there is a House bill, the United States House of Representatives, it's HR4099, 4099, and it would basically gut the current enforcement arm of the ADA and make it so individuals with disabilities would have to inform a business that they have been discriminated against by their building, exactly what's wrong, how to fix it, and then wait for a response from that business.

25:04 RK: That response may take a month, and in that response, they don't even have to say, "I fixed it already." They can say, "I'll fix it in six months." So really, seven months of waiting around for barriers to be removed after 30 years of waiting doesn't make a whole lot of sense to me. But it does appear to make sense to Representative Joe Wilson and Representative Tom Rice, two South Carolina representatives that have signed on to support this bill. Let's slow the train and make sure that they know the negative impact this would have on the disability community.

25:04 SN: Yes, that's very important. And speaking of the ADA, anyone who's listening today, you're hearing this first, but we will be having... [chuckle] I think Robbie is hearing this first, too.

26:15 RK: What is it?

[laughter]

26:16 SN: He looks very interested. We will be hosting events throughout the upcoming summer to celebrate the ADA and just fostering disability pride in general, and that's something we're gonna want the whole community, and all intersectional communities involved in. So definitely be on the lookout and stay tuned for more information on that soon, but we will have exciting stuff going on this summer.

26:39 RK: Woo-hoo! That's what Dory would say.

26:42 SN: That is.

26:44 RK: Another really big federal movement that we're seeing right now is the census. The census happens once a decade. I expect that we'll dedicate a whole podcast episode... I'm not sure how many podcast episodes we've promised in this one episode, but they're all coming.

27:00 SN: We're gonna have to get started.

[chuckle]

27:02 RK: For the census, we're gonna talk about really the value in being counted and the impact that an accurate count has. We know that people with disabilities are less likely to be counted in a census and we'd like to turn that on its head in 2020. There are so many federal resources and dollars that could come back to South Carolina when we have the accurate counts, people with disabilities, people without disabilities, making sure that we're getting our fair share in South Carolina. So that's huge. There will be specifics directly from the Census Bureau that you'll be getting starting in March. And Census Day is on April 1st.

27:44 SN: April 1st. What a funny day. It's April...

27:46 RK: Funny day.

27:48 SN: It is. It's April Fools Day, but you know what it also is?

27:52 RK: I have a feeling I know. It is also Advocacy Day for Access and Independence.

27:57 SN: How'd you know?

[chuckle]

27:58 RK: Advocacy Day for Access and Independence is a huge event. It is the disability rights celebration at the State House that takes place each year. We are holding it on April 1st. Disability rights ain't no joke, but we are having it on April Fools Day anyways. It's also Census Day, so the day we celebrate the census will also be the day that we celebrate disability rights. And really, one of the key messages that's gonna come out of that is, "I count." Because it's so important that every one with a disability is counted. We're not talking about tracking you, just talking about getting an accurate count so that the feds know how to allocate transportation dollars and housing dollars, and so many other dollars back to South Carolina.

28:44 SN: And like we were talking about earlier in not having sufficient data in some of these areas, being counted in the census will help with that. Going back to Advocacy Day, if you are listening and you haven't been to one before, or you might be curious about it, it is awesome, first of all, just thought I'd throw that out there...

29:04 RK: I think so.

29:04 SN: But it's also a great opportunity to really show the power that people with disabilities have in our community and in the legislative process. I know last year we had, I think over 20 partners involved, and we had about 600 people turn out at the State House...

29:22 RK: 587 was our peak count at Advocacy Day.

29:25 SN: And that really demonstrates the power that the disability community can hold and that we want to share a voice and we want to be counted. And it's also a really great introduction to people who might wanna get involved in the legislative process, or just wanna find a community of people who care about the same issues that they care about. So it's really like a great introductory moment or a place to expand upon your activism.

29:53 RK: Absolutely. It's kind of a jump-off point. I think a lot of times for folks that haven't been evolved or... Evolved, weird. Haven't been involved in a political process...

30:04 SN: You've probably evolved.

30:04 RK: Yeah, some way or another. Haven't been involved in a political process, Advocacy Day is a really great way to see how easy it is to get in front of the folks that are elected to serve us at the State House, get in front of the folks that make decisions on what our life looks like on a day-to-day basis, and it's also just a really fun, easy day to come and hang out with people from across the state with a lot of different experiences, all raising one call for access and independence.

30:36 SN: Mm-hmm. Talk about community.

30:38 RK: For sure.

[chuckle]

30:40 SN: Again, that's April 1st. So if you're interested in attending, of course it's free to attend, it's a public event, but we do like to have an idea of the numbers of people who will be attending. So if you go to our website, able-sc.org, you can find a link to register on there, or you can check out Advocacy Day's own website...

31:05 RK: Unlockingbarriers-sc.org. Check it out. What's really cool and what I'm especially excited about in 2020 is we're gonna... We're encouraging people to take individual actions of advocacy leading up to Advocacy Day. So we have three issue areas that we're really focusing on transportation, employment and public access. These things are not new. The barriers that exist in these areas aren't new to the disability community in South Carolina, but this is a year that we're gonna take some really direct action on how to remove those barriers. So public access, we are asking people to share positive posts about what is accessible in the community. What works for you? Where do you like to go? Where do you like to be? How can we show that there is a benefit, a public benefit to accessibility? Another is transportation. Taking a ride with a community leader. If you use public transportation where you live, chances are, your elected representation has not used that public transportation resource.

32:09 RK: So take a moment, invite them to take a ride, ride with them, talk to them about what's important to you and help them get a fuller understanding of disability. Also for employment, we are putting together an employment first pledge and hope to be releasing that super soon. It is a way for individuals and employers and elected officials and service providers and educators to all make one pledge to further competitive and integrated employment in South Carolina. And it doesn't sound as complicated as [chuckle] it may seem. There are action steps that we can all take now to further disability employment. So we'll be taking these actions leading up to April 1st. You'll see information about that on social media, on e-blast, if you're subscribed. If you're not subscribed...

33:01 SN: What you waiting for? [chuckle]

33:02 RK: Yeah, go ahead, subscribe. You can even subscribe while you register to attend Advocacy Day. So two birds, that's short for two birds with one stone, and it's actually kind of aggressive. And I'm sorry I used that reference. But yeah some really great things that we can do. So I would encourage you all to look at or look out for content that's coming through #AccessInSC, that is the hashtag that we're gonna be using for this positivity campaign and to share advocacy actions leading up to Advocacy Day, and really following Advocacy Day too.

33:38 SN: Yep. And follow Able Sc on Facebook, Twitter, and Instagram, and LinkedIn if you're fancy, and we'll be sharing all of that stuff as well. Whew! So, I know we just...

33:50 RK: 2020, man.

33:51 SN: 2020, there's so much going on, and probably even more that we can't even imagine yet. But I know we just threw a ton of content at you, a bunch of ideas. This is just kind of an overview podcast. So since we promised you about 20 more podcasts in this one episode, you can expect a more in-depth dive into a lot of these topics, as well as our website, social media, always host more resources and where you can learn more about some of this.

34:20 RK: Get plugged in, make that the 2020 resolution. Get plugged in to disability rights, subscribe to the podcast. Get plugged into Advocacy Day. Get plugged in to our social. Just do it. 2020 is the year for disability rights.

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Veterans have paved the way for generations of disability rights advocates. In this episode, Boris is joined by his good friend, US Army Staff Sergeant Andrew Lanman as we try to give back to our vets by talking about the services available for service disabled veterans and veterans transitioning back into civilian life.

Disclaimer

Transcript

Boris Klaric: Good morning, everybody. Thanks for joining us for another episode of the Access Aisle. As always, my name is Boris Klaric, and joining with me today is US Army Staff Sergeant Andrew Lanman. How are you doing today, buddy?

Andrew Lanman: Good.

BK: Well, thanks for joining us today. We are observing Veterans Day, and all the work that veterans have done not just for our country but especially in the realm of disability rights and disability advocacy. Can you tell me a little bit about what it is that you do, and the kind of things that you experienced working with the veterans with disabilities?

AL: I originally went into the Army Reserve as an MP. I was 18. I wanted to do law enforcement, at least I thought I did. That's a hard job. I joined at 18 in 2006, 2005, somewhere in there.

BK: Right out of high school.

AL: Pretty much right out of high school, yeah. I took a year off. I was adamant I did not wanna join the military, but I was told that I can either join the military. If I wanted to go to college, I'd have to figure out how to pay for it, and so I joined the military. That was the only way I was gonna pay for school. I joined the military 2006, 18 years old, 'cause it was the only way I could be in law enforcement and not be 21, 'cause you have to be 21 to do civilian law enforcement 'cause of the whole firearms laws. After seven years, I decided I didn't wanna do it anymore, and I switched over to psychological operations which is like, in my opinion, the best MOS the Army has. We work a lot with civilian populations in other countries and things like that. We do a lot of... It's marketing and advertising, and it's trying to get them to stop doing or to do an action that's beneficial to them.

BK: Got you.

AL: Graduated from Limestone College in 2015, with my Bachelor's Degree in Social Work. And then I went to University of South Carolina, graduated with a Master's Degree in Social Work. And it took me a little while. I applied here, there, and everywhere. And I knew ultimately I wanted to work at the VA, and I never imagined that I'd get it right out of the gate. Actually today is my two-year anniversary there.

BK: Nice. Congratulations.

AL: Mostly what my work deals with is the disability claims that they put in. It's not so much like a disability paycheck, when you think about it in terms of that goes, like a Social Security Disability or something like that. It's actually... And this was something that I learned when I first started working there, is it's more... It's compensation. If you think about it, you have 100% healthy body or 100% able body, when you get that disability rating from the VA, let's say you're 30%, 40%, whatever you are, that's 40% of time that you would otherwise have to, if you were able-bodied, give to an employer, that 40% of time, that compensation that those benefits are supposed to go towards making up for that pay gap. That would be time that you would normally be at work, you're spending at doctor's appointments and things like that.

BK: Okay. So, at that point, factoring the time that's spent on the disability, and mitigating symptoms and factors related to that transition?

AL: Right, yeah.

BK: Okay. What have you noticed about the types of disabilities and the types of claims that you're seeing that are popular or prevalent?

AL: A lot of it is gonna be your musculoskeletal stuff, like your bad backs, bad knees, bad joints, things like that, and some mental health issues. PTSD is a big one. We've all heard that 22 A Day thing, where we're trying to prevent veteran suicides, and it seems like every other... Just about every other week, you're hearing about another veteran who's committed suicide. That's one of the big issues right now, is definitely the mental health. We've gone from not even actually having a diagnosis. They called it soldier's heart in the Civil War, and then moved forward to Vietnam era, and now you have shell shock. And so now I see a lot of older veterans coming in, and claiming mental health issues and PTSD for some Vietnam veterans first time ever. And that war ended in the '70s.

BK: What do you think some of the barriers were preventing them from seeking that care out sooner?

AL: I think a lot of it veterans are hard-headed or stubborn. A lot of it is we don't wanna ask for help, because we don't necessarily see that there's anything wrong with us. We don't want people to see us as broken or anything like that. And so a lot of that is invisible. Personally, I have TBI from getting blown up when I was in Afghanistan, and I also deal with PTSD, and I have some musculoskeletal issues, too. It's rough on the body. And so that's one of the big things is, when you're young, you feel like you're invincible, and then you start to get older and you're like, "Oh, man, I guess I got messed up a lot worse than I thought I did." And so we see a lot of the older veterans coming in now for the first time. Vietnam, those veterans, they really got the short end of the stick when it came to that kind of stuff. And so we've seen a lot of things come out of just those veterans, like diabetes from Agent Orange exposure, which is the herbicide agent that they were using to defoliate the force over in Vietnam. A lot of what we call presumptive things, like the musculoskeletal issues, and some other stuff like respiratory issues out of the Gulf War, first and second Gulf War in Southwest Asia. And there's a lot of things that go into that that a lot of people don't really know about. There's a lot of things that you get to... Old Uncle Sam stays with you once you get out of service. And you don't really realize it, and some of it takes several years to manifest. And so you don't really realize how bad it is. And then on top of that, it's the not wanting to ask for help thing 'cause you're a soldier, you're strong. You don't wanna show weakness. That's a lot of it, I think, is wanting to avoid that image of weakness, which now, knowing and being older, it's definitely not weakness if you need help. It's something you should do, ask for help.

BK: Yeah, absolutely. What type of resources do you feel like you want your fellow veterans to know about?

AL: The education money that's there for disabled veterans. We have VR&E, which is Vocational Rehabilitation and Employment, not education, which a lot of people think it is education. But it's counseling services that you have available to you as a veteran to help you get that vocational training and rehabilitation and employment ideally, 'cause that is something a lot of people don't understand. Yeah, you can be 100% disabled through the VA, but you can still work. And that's one of the things that the VA does try to do, is to help veterans find employment. And there's a lot of employers out there that are willing to hire veterans just because they're veterans.

BK: Absolutely.

AL: I'm a service-connected veteran, too, and I work at the VA and that's... The biggest joy I get out of it is helping other fellow veterans. I might not ever see them face-to-face, one-on-one, but seeing what they're going through and some of the issues that they're dealing with disability-wise, and knowing that I was a part of being able to help them in some way, is a huge benefit for me.

BK: That term you used, "service-connected vet," what does that mean?

AL: Service-connected entails... There's a lot of laws and regulations that govern it. And basically what... The layman's definition would be anything that you have, if you have a disability, like if you hurt yourself in service and now you're no longer serving, you have service-connected disability. And so that's basically where the VA finds that you incur this injury or you did something in service to cause this disability, and it's considered service-connected, so it was caused by service.

BK: How common is that amongst, you feel like, the current generation of active duty?

AL: Pretty common.

BK: Pretty common?

AL: Pretty common. Like I was saying earlier, a lot of people don't even really realize that it's considered a disability. I mean, it is, especially the invisible wounds, like the mental health stuff.

BK: Yeah.

AL: Yeah. It's been a lot of veterans pushing for that, because when you think of disabilities, and it's unfortunate, you think of your deserving populations and those who, although this isn't their fault... Well it's not really anybody's fault. You have veterans, and it's a good face to put on something. They didn't even have... Veterans didn't even have disability rights until not long after World War I.

BK: Yeah. World War I is how we got service animals. It was because of the effect of mustard gas and so many people coming back blind, that they had to... Those hospitals had to find a way to, "How are we going to accommodate now these thousands and thousands of returning troops that have these needs," and they were directly as a result of their service.

AL: Right. And the big thing is when they marched on Washington after World War I and they were trying to get these benefits, they were actually hosed off the street. A lot of people don't realize that. They were veterans, US service member, former service members were marching on Washington to get some kind of compensation for being sent to this war and coming back catastrophically injured, missing limbs and eyesight. We don't see a whole lot of mustard gas and lose sight claims anymore, 'cause that stuff is not really supposed to be used on the battlefield. But a lot of the stuff that came out of that, we're still seeing today. Parking spaces for physically handicapped individuals, that came out of that. But they were actually hosed off the streets. They had their little camp outside of the White House, and they came out and this riot police just hosed veterans off the streets, and then somebody was like, "That's not right." That's where we got a lot of our initial disability laws and stuff from.

BK: From your perspective, what's missing? Because we know laws are not all-encompassing, we can't fix every single issue that's going on with legislation, as much as we try to. What are the gaps currently that are hurting our veterans?

AL: I just think that it's a bureaucratic process, so there's a lot of red tape that goes into it. I can look at a claim for a back injury on one veteran and a claim for a back injury on another veteran, and there's a checklist of laws and regulations that go into what is and what is not service-connected. And one of the biggest issues I see is... And they've done a lot for it, is having to prove that this is something that was caused by service. And so now we have a lot of these presumptive things that I was talking about earlier, where we know that if you were in the military based on your MOS, or your Military Occupation Specialty, what your job was in the military, you're more likely to be exposed to certain things and others. For example, an infantry person is probably more likely to have really bad knees, ankles, and back from having to carry all that heavy stuff around, or bad hearing or tinnitus, the ringing in the ears, a lot of that stuff.

BK: And so it's gotten a lot easier for that, but it's still hard. You can't... The old saying, "You can lead a horse to water, but you can't make it drink." So, I think, if there was more awareness on what is actually available to veterans through the VA, for example, if you have loss of use of both feet, there is actually a grant that you can get to help you get money for specially adaptive housing or specially adaptive automobile equipment.

BK: And this is for veterans specifically?

AL: Mm-hmm, for veterans specifically. You have to meet certain criteria. There's a lot of laws and regulations that go into it, but once you get that, it's a grant. And I know that if you have prosthetics, you can get a clothing allowance, too, which is recurring every year. You get a certain amount because you might have to have garments altered to accommodate your prosthetic.

BK: Okay. I know earlier we talked about one of the things that keeps veterans from seeking care is that mental barrier of, "This isn't a problem," that showing weakness. Do you think that that's a culturally inherent thing in the military and that that's possible to change, or is that the cost of doing business?

AL: A little bit of both, honestly. I've been in for about 13 years now, so I've seen a huge change in that, because we went from peacetime Army in between wars in the '80s to now, the first Gulf War in the '90s, flash forward a couple of years, we've been at war in Afghanistan, in Iraq now since 2001 timeframe. So, the keeping it quiet and sucking it up and driving on thing has really gotten a lot better. Plus there's a bigger emphasis on the hazing thing, that's been really cracked down. The joke around, it's a "kinder, gentler Army." In reality, we still have the training, we still have the expectations, but I think now it's getting more... This is why, in the past, there have been such worse injuries and ongoing issues, and veterans seeking help for the first time. They might have got out 10, 15 years ago, 20 years ago, because of that culture from the past. And now the culture has shifted with more of an emphasis on seeking that help.

BK: Do you think it's easier now to find those services? Do you think they're more available than they were in previous decades?

AL: I think so, yes, 'cause we've been at war for so long now, so I think that there are a lot of those organizations out there, like Wounded Warrior Project, Folds of Honor, which help scholarships for fallen veterans' families' independence. There's a lot more of those services out there now than there was in the past, and that's also helped for veterans to be more active and actively seeking those benefits.

BK: What is something that... So you would want service providers to know as they're trying to reach this community and get people into care, what are some things that we need to keep in mind in being accommodating for and including veterans?

AL: Most of us are stubborn, speaking from personal experience. I don't really like to go to the doctor, but when I do go, it's generally because something's really not right. And so I think one of the things to be most aware of as a service provider or a medical service provider for a veteran is that if... They're coming to you more likely because they really actually realize that there's an issue. And they're hard-headed. [chuckle] We do, it's AMA, against medical advice all the time. I just had back surgery for my back not too long ago, and I had to constantly remind myself I can't do that yet, I gotta let myself heal. That's probably one of the biggest things, is we're stubborn. And the whole seeking help in the first place is against what is culturally acceptable, what's socially acceptable within the military culture.

BK: We already know that coming from active duty back into civilian life, that's a transition. And then adding disability to that transition, what are some unique things that veterans with disabilities are facing when they're trying to adjust back to life after the military?

AL: Slowing down. I think that was the biggest thing. I have a couple of deployments. I've been in the Reserve for 13 years. My only active duty time really is deployment. And it's such a huge change of pace coming back from that side and having to turn that switch off. And now you're back in civilized society, and you have to slow down and you have to realize that not everybody has a lot of the same training and a lot of the same stuff that you saw and went through. And that was one of the biggest transitions. I hear a loud noise, and I'm looking around for what caused it, where it came from, and nobody else is freaking out, and that causes my anxiety to go even higher. It's like, "What's wrong with you? What are you... "

BK: You feel like that extra spotlight is on you now because, "What are you looking for?"

AL: Yeah, 'cause now I'm freaking out and I'm looking around trying to figure out what's going on. And nobody else is doing anything, and I'm getting upset that they're not doing anything. And now I look like the crazy veteran on the...

BK: And it spirals from there.

AL: Yeah. That was one of the biggest transitions, is just slowing down, taking a breath and not... You know.

BK: Yeah. Last month was National Disability Employment Awareness Month, and we really celebrate the efforts to get people with disabilities back into the workforce, back to working. What is something that you would want an employer that maybe hasn't thought about a veteran with a disability for a position, or hasn't really thought about what it would take to court that population back to work? What's something that you would want that employer to know?

AL: Just be patient. Hard workers. Most people I've met in the military that are veterans are hard workers, and they're willing to dedicate themselves to accomplish the task. That's what we're... I hate to use the word "indoctrinated" into, but that's basically what it is. We have our Warrior Ethos and it's, "I'll never quit. I'll never leave a fallen comrade." Then there's a couple of others. The commitment to the mission is there, they might just get frustrated with their co-workers sometimes. It happens.

BK: Yeah. But they're really process-oriented.

AL: Yes, exactly, definitely process-oriented. They wanna know what the end goal is and anything that they can do to help get there.

BK: That's something that any business model can benefit from somebody that's ready to just pick up the process and...

BK: Are there services for vets in that same breath that can help them find jobs when they get out?

AL: Yes, the VR&E that I was talking about earlier.

BK: So, they'll work with active duty that already have their end day and their paperwork?

AL: Right, yeah. They'll start getting you worked on, getting enrolled in school, if that's what you wanna do. They'll start working on helping you find employment, if that's what you wanna do.

BK: And what are the... Are we seeing... Have these programs been around long enough for us to see the outcomes and the benefits for those veterans that are using them?

AL: They've been around for a while. I can't really speak to the outcomes and the measures of effectiveness. The laws change all the time. I guess you were asking me earlier if I could think of one thing that I wanted the veterans to be aware of. It's that you don't see it immediately, but your voices are heard. The committees and people that they have up in DC, they hear you. We recently just re-did the appeals process, and I think it's a lot better than it used to be. They used to have veterans waiting three to five years for an appeal to be heard. Now, they can still go that route, if they want, but now they have other options, so it's a lot quicker turnaround. Voices are being heard. The laws are changing constantly. It has gotten so much easier as the time goes on, especially now with everything being digital. It's all computer. There's no paper claims folders anymore. Yeah, it's come a long way. It's come a long way, and I love it. Laws changing all the time. I mean, it's stressful because you learn one way, and then you're told... Every quarter, every time the regime change happens up in Washington, and they want this to be done versus this not to be done, and it's getting better and better and better. Voices are heard, laws are changing all the time. That's probably one of most stressful things about the job, but that's also one of the best things about the job.

BK: 'Cause you get to see that change happen in real time.

AL: Yeah, exactly. I get to see that change happen in real time, and knowing where we've come to where we are now.

BK: Awesome. Well, that was perfect.

BK: This has been an excellent talk. Thank you, Andrew, so much for joining me here today. This is where you say, "Thank you for having... "

AL: Oh, thanks for having me.

[chuckle]

BK: Awesome. [laughter] Awesome. Great.

AL: I have no social etiquette.

[laughter]

BK: Yeah. There's not... For podcasts, there's really not.

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Happy Halloween! What's scarier than trick or treaters being denied candy? Ableism. And probably finding Freddy Krueger in your closet but today's episode is only covering the ableism behind the Blue Pumpkin buckets movement creeping its way across social media.

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Transcript

Boris: Happy Halloween to all you ghouls, goblins, creepies and crawlies from your friends at the Access Aisle. I’m Boris Klaric and it is my solemn duty to prepare you for the frights that await you for this year’s Halloween festivities. That’s right listeners – there is something going on in your neighborhood. And I’m not talking about that one house down the street that always gives out toothbrushes and floss – oh no no no. I’m talking about the fear that’s turning small town America’s pumpkins blue. Take it away local news clip.

Local News Clip: You may be seeing some blue pumpkins mixed in with the traditional orange this year. Blue pumpkin candy buckets are meant to raise awareness that a child or a teenager may have Autism and in some cases may be nonverbal so they may not be able to say the traditional Halloween line “Trick or treat”. A mom from Hawaii posted what she calls her Blue Bucket Message on Facebook, saying her 3 year old has Autism and is nonverbal. Last year candy givers waited for him to say “Trick or treat” in order to get a piece of candy and she had to keep stepping in to explain. This year she hopes the blue buckets will be an automatic message to people.

Boris: There’s a lot to unwrap here with a very slim chance of a nougat center but let’s start at the origin. A mom whose 3 year old had trouble saying "Trick or Treat" at the age of 2 and felt inconvenienced by how often she had to volunteer her child’s disability to strangers in order to get free candy from them. Since when are we expecting 2 year olds to be able to trick or treat on their own or understand the economics of how costume investment impacts chocolate returns? Is this town in Hawaii so engulfed in the traditions of Halloween that they’re throwing lit jack o lanterns at kids that don’t utter the sacred three word phrase in order to get their pharmacy brand candy? If it’s neither of these things than it’s probably just another media-fueled opportunity for people without disabilities to take insignificant action on behalf of people with disabilities with no actual thought for what those people want. While this isn’t really an example of inspiration porn – it follows the same ableist recipe of focusing on the deficits of the disability and completely excluding the disability community’s input. It’s an opportunity for people without disabilities to do something they can congratulate themselves for but doesn’t actually do anything good for the disability community. Much in the same way that hating candy corn is not a personality – picking up any old cause that comes across your timeline does not make you an effective advocate. Lets keep it real: children with Autism do face unique challenges. Studies have shown that kids with Autism are significantly more likely to experience bullying than their peers. Making a vulnerable population wear something that identifies them as vulnerable has literally never been a good idea in the entirety of human history and has often times been a first step to even more problems being forced upon those populations. If you want to help a child who has trouble with verbal communication get some free candy there are other more effective means than singling them out. First, if you’re the responsible adult travelling with the kids, you could just say “Trick or Treat” for them. You could make a sign with “Trick or Treat” written on it and give it to kids who are nonverbal, shy, or just straight up don’t want to talk to strangers for the sake of a fun size Snickers. And for the candy givers – if a group of children comes to your door on the evening of October 31st, they’re not there to get your response for the census or ask about your satisfaction with your internet service provider. They want some candy. Give the kids some candy and go back to your Nightmare Before Christmas sing along DVD.

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Happy #SCPride! To help us celebrate the 30th annual Famously Hot South Carolina Pride event, we spoke with Daniel and Ruby of globally known drag troupe, Drag Syndrome about their art, their travels, and the empowerment of drag.

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Transcript

Boris: My name is Boris Klaric and you are parked in the Access Aisle.

Boris: Good Morning and thanks for joining us today. I’m going to be speaking to Daniel and Ruby from the world renowned Drag Syndrome. A touring group of drag kings and queens who’s stage performers are all people with Down Syndrome. Thanks for speaking with me today and for all the great work you do in helping spread the message of inclusion and pride all over the world through your art.

Daniel: Yes. That’s what we do. And what I must say from the beginning is… You know our starting point is art so this is what we're here for is to perform, is to create art. It can be dance, it can be drag, it can be ballet, it can be live art, performance. And then suddenly what happening, is stateside suddenly you become either advocate or an activist and we want to get back the conversation to the arts. To the performance, to the culture of what we do so not everything that somebody with disability does will be.. make waves and will be talked.. And then the art will disappear. The conversation has to surround the art and performance and the career that the artists have. And again this is something that when we see...when we travel the world and we see sometimes that people; instead of looking at the art first, and the craft first, there is always this label of the disabled. And its a bit boring for us because it’s not – it’s celebrated anyway. It’s unapologetic. And this conversation first about disability and then the art is a bit boring, especially for the artists that work with us, because they do what they do, they don’t really care about what people think about them, if they think that they’re special needs, disabled, or Down’s syndrome, or whatever, this is not their concern, their concern is to really, perform really well, on interesting stages and platforms. So the conversation about disability.., You know, people now see that disabled artists are interesting. There is a new wave of artists with disabilities in Europe that is doing incredible work, refreshing, interesting, insightful. That what we call mainstream audience actually really engage and love it and the disability is like another layer it's not just, it's there just like any person that have layers of their personality. It's not over dramatic, its maybe can be bonus and I think a lot of people want to divert conversation that people with disabilities are not enough to be a mainstream artist or as high quality artist as everybody else wants to be. And this conversation we were very happy that what happened in the states kind of raised awareness that people actually see the disability rather than the person and this is a bit boring way at looking at people because even if you look at disability if you look at down's syndrome, every person with Down syndrome is so different from one another. They have totally, totally different vibes. And same with other group of people, and I think dociarty have to learn that the word disability of somebody with disability doesn't mean anything about the person and it’s interesting to see all this coming and making us see that they actually have personalities and they there and they are successful as they are because they are very, very talented and very magnetic and any kind of artist you have to have these qualities to be successful artists. So you know, for us, this conversation suddenly we had to kind of get out of our artistic skills and start talking about what the art they are producing is actually affecting society and culture we didn’t want to kinda start a conversation but the conversation is by us performing and really enjoying and fulfilling our careers and suddenly you're asked to kind of justify what you do because somebody disagree with you or see disability as very limited or somebody with a disability, intellectual disability, any disability, is not a whole person, being dependent or that they are holy people, very angelic, untouchable and not real. Sot this extreme but people with disability in a place of everyone interfeing their lives without knowing them without really care its all assumptions trying to kind of some people suppress the disability community bc it's uncomfortable. So, in that case people i think missing out on great new voices with been here for long, throughout our journey we meet a lot of artists with disabilities, activists and they have minds that are so interesting the conversation we have with people we met is refreshing insightful it’s so beautiful and what we try to say is oh my god, you have to listen because it’s quite exciting, and you have to get outside of yourself and what you think about others and we living in a world where everything were everyone is criticizing everyone whether its disability, if it’s color, if it’s race if its gender and everybody thinks that they can say whatever they want about people and they can decide for them whether its good or bad or what it should be and I’m glad that a lot of people with disabilities are really stubborn people. I really like this trait for a lot of people with disabilities that suffered a lot of kind of repression and learned to be independent are super stubborn and quite loud and very clever. And i really like this voice

Boris: I would assume it contributes a lot to the art to have a strong voice like that.

Daniel: Absolutely! That’s what I’m saying. If you will see a lot of artists with disability here in Europe, their work is extraordinary. Their voice is loud and very clear. and very clever, and very refreshing and this is adding to art and culture and society and to people who like aesthetics and culture and art, This is always a conversation that needs to happen. It’s a good thing and annoying thing, and again always when you have disability you have to promote it and explain it a part of, and this society will know it really doesn’t matter. And so while working on this project , you always have to champion something, though all you want to do is just to have a party and explore, and to travel the world it’s coming with a message without us wanting this message to be what we are, They’re first of all amazing performers.

Boris: Oh yeah,. I think though with powerful art and just quality art that you guys are apart of and you guys get to not just share locally in the U.K. but to take and show the entire world a type of art like that, I mean it’s just a matter of time that I think, showing something like that to so many culture starts just a domino effect,.

Daniel: Yes, yes, What do you think Ruby, Is it nice to go to different cultures to perform in different countries and different cultures. Why it so important?

Ruby: It’s great to show the world, perform to our fans,. And everybody loves us. No haters, no protestors.

Boris: One of the things I’ve been talking about with Daniel, a little bit about how you got started, do you want to talk a little bit about what kind of brought you into the group, and why you wanted to pursue this as a career?

Ruby: Well I’ve always dressed like a boy and my sister found him online and I wanted to do drag. And I came to him and Daniel’s like “Oh my god, I’m in Drag Syndrome, How amazing is this?” With so many people and so many friends. It was great to be part of it.

Boris: Awesome. So you’ve been on the road a lot?

Ruby: Yeah.

Boris: So when you’re travelling on the road do you get the same kind of welcome at every place. Does every show have the same kind of energy?

Ruby: Sometimes. When we went to America we had a meet and greet about Drag Syndrome, But everyone was clapping and everyone was cheering. It was great. Everyone always loves us. And we deserve to be able to perform and make everyone’s lives easier. And if they hate us mate, get away from my face.

Daniel: Yeah I think she’s right. Everywhere we go we get really warm perception.

Ruby: And sometimes we have bad receptions too with certain people. Like in America for instance, there were lots of protesters and it was terrible for us.

Boris: Did you kind of expect that coming to America

Ruby: Not, no. I never thought that’d happen but when it did I was like “Oh god, are you serious?” I was shocked.

Daniel: The organization that invited us, we had great warm welcome from them. They all came to the airport to cheer them and they sent a limousine to take them to their hotel and and there was supportive press, so we did get a good welcome as well. Negative and positive

Boris: And that show sold out if I’m not mistaken

Daniel: yes, the show sold out in three hours. Then we were asked to an ankle? show that sold out as well.

Boris: Ruby, what stands out to you as the most memorable performance you’ve ever done.

Ruby: Definitely Berlin,

Boris: Oh yeah? What was special about Berlin?

Ruby; Well I met the guy of my dreams (unsure) and the crowds were wild. And they loved us so much.

Daniel: What else did you like about this gig?

Ruby: I just told you, Pansy?.

Daniel: What else

Ruby: The crowds, the food, everything really. But especially being with Daniel, he’s perfect.

Daniel: Yeah right.

Ruby: You are, Daniel. Some days you and me will argue, some days we’ll stop.

Daniel: What other gigs did you like?

Ruby: I liked Cardiff. (unsure) as drag queen. He was brilliant,

Daniel: What’d you like about your performances?

Ruby: My performances are amazing. They are mindblowing because I’m always bendy. They’re crazy with a wow factor.

Daniel. What else, what other gigs In al the gigs what did you enjoy best

Ruby: Well you know, the audience, the drinking, the hanging out with (unsure).

Daniel: Which gig do you remember a favorite place which you loved, loved, loved

Ruby: Berlin!

Laughter

Daniel: Berlin tour is the last tour.

Ruby: I loved it!

Boris: Well, that just sounds like a true artist in that your last one is always you best one.

Ruby: yeah

Daniel; That’s correct.

Boris: Ruby do you feel like drag empowers you?

Ruby: Oh yeah, definitely.

Boris: How did you first get into drag?

Ruby: Well you know, I was watching RuPaul's Drag Race on Netflix and I was so into it and so my sister found Daniel online to get me into Drag and I loved it so much. Oh god I’m such a king and I loved it.

Boris: I know you said before that your skills are unmatched. That your the best at what you do. How did you hone those skills over time?

Ruby: Well you know, I did it for a long time. Since I was a kid, since I was in (unsure) schools (unsure). Everything like that. Yeah everyone goes, “Oh my god, you're so good. Can I dance with you ``''No you can't because your too drunk.”

Boris: Do you feel like there were any obstacles or anything that made it hard for you to get to where you’re at?

Ruby: No, no, I love it.

Boris: So you found what you loved and you’ve been doing it ever since, pretty much.

Ruby: Yeah, I just love being a performer and being in drag. And my process when I dance, I do pole dancing and all that stuff. That’s how I get my dance moves to make me more flexible as always.

Boris: Did you go to like a dance school?

Ruby: No not really, but I did do ballet at the royal opera house in London. And I was really good because Daniel’s like “Oh my good, Ruby, you’re so good.” So I once did ballet and it was so awesome. I had a private ballet class in my house (unsure) I became the best person that you’ve ever seen.

Daniel: yeah, work it. Why not?

Boris: Absolutely, Absolutely. So Ruby what if I'm just coming to a show for the first time, I don’t know anything about it. I’m just coming for the first time, all my friends say it’s great. I want to come. What is something you want me to get from you performance?

Ruby: Inspiration. Because when you look at the performers and drag, and you might think, “ Why they're doing drag ” Why are they people...well not people, to me people are drag. If you love drag come to our show, love us, be our biggest fan, come in contact. But if you hate drag, hey, get lost.

Laugher

Boris: I would love to see you guys come back to the US. I’d suspect that you guys would sell out again, very, very quickly.

Ruby: oh yeah.

Daniel: Oh for sure. Yes there is a lot of interest, and mainly, a few people with Down syndrome contacted us saying they would love to meet us and love to collaborate with us. In the first show, in Grand Rapids a member contacted us before and say that he really wanted to join us so we met at the half time and he went on stage and performed as one of us.

Ruby: yeah

Daniel: He was absolutely great…

Ruby: He was a Brilliant Dancer

Daniel: Brilliant dancer, yes. Another guest artist joined up on stage and then we got a load of requests from performers in the states. So in the near future we probably will come again. We met amazing people, very interesting…

Ruby: Oh yeah, Lady Dior!

Daniel: Yeah we met great other queens and we sold out two shows with great audience, who were really interested in performance and culture so it was a very successful even. I know it’s not representing America what happened. This kind of disclination, indirect discrimination happens everywhere around the world. It’s not a national thing special to the states. But what we learned is that there are actually people judging people without actually knowing the facts and interfering with people’s life negatively when they don’t know anything about them, what they want and what they need. Also we learned that a lot of people with disabilities don’t have a loud enough voice and because of that, people are living their lives, they make their lives poorer actually. And separating and giving people with disabilities more space in society, is again, kind of trying to push away. And if you give artists a chance they develop what’s called art, and bring something new to audiences.

Boris: Ruby, do you feel like including people with disabilities is important for drag?

Ruby: Yes it is. It’s really good to encourage other people who have disabilities to come on the stage and dance with us.

Boris: Is that something that happens at a lot of your shows, that the audience performs?

Ruby: Yes, it has to be. We need to encourage other people with disabilities to be part with us and they can dance with us, like we have in America.

Boris: And so this has happened worldwide, like whenever you travel. That you’re that inclusive that anybody that wants to come and celebrate and be a part of your art gets the chance to?

Ruby: Yeah

Boris: And how does that make you feel to see people want to be a part of what it is that you’re doing?

Ruby: Well it feels really nice to meet people out and about and for the disabled, it’s important for all of us. Because if they come and face backstage to see us and what to dance with us your always welcome to.

Daniel: It’s something, again, for us a person is a person. So of course there is around a small people with visible and invisible disabilities. For us it’s the norm. This is how we roll. And we don’t apologize and talk about it too much and that surprised this is how it is and how wonderful it is and missing out. Diversity is spice of life and we have a lot of spice and thats why we're surrounded by people with different disabilities. That means we have very colorful people around us and its fun all the time . And again every disability is so unique and every person’s own disability is so unique. It’s always very exciting, you don't meet the same person again. That's why on this tour we meet hundreds and hundreds of people, very interesting people. And what personally I’ve learned, is that again, every disability is so personal that I usually ask when I meet somebody their specific disability and their specific thing and then you realize this kind of universe, this unique person with their very unique universe, and a very unique way at looking at things. And by working with this company, we meet what's called disability, and for us it’s so normal. And when we get asked too many questions about disability, its like you talk about something that you do every day. And now, suddenly you have to talk about the mundane. For you, it's the mundane, for others, it’s too intense, a big topic, something you...I guess that’s the way of the world, but I think if you hang around with us and see us performing you’ll understand that art and disability is such an amazing combination.

Boris: Yeah,I’d agree. Ruby, you got any additional thoughts on that?

Ruby: Yeah I do

Daniel: Go for it.

Boris: The stage is yours

Ruby: Thank you. I’d love to encourage other people with disabilities, mental health, or anything like that, if they want to come and see us perform, they always are welcome to. I just want to say, You guys are making our dreams come true. Making us a really good time and having a good time with us. And if you want to go out for drinks some time we can all go out for drinks as a group.

Daniel: Anything else?

Ruby: That’s it. And one thing about the haters.

Boris: Yes, please address them

Ruby: If the haters hate us, then carry on hating us. Who cares? We all performers, we’re all disabled, we all got the right to be who we are, and live our lives in drag, perform on stage and make everyone love us. And if you come to our show, the haters’ you'd see that we are not just people in drag. You’ll see that we are professional artists. That is what we are about. We’re all professional artists all working as performers, and that's what we are.

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On this episode Boris is joined by his boss's boss and the executive director of Able South Carolina, Kimberly Tissot to discuss the challenges facing parents with disabilities and what the Persons with Disabilities Right To Parent Act did for South Carolina's families.

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Transcript

00:00 Boris Klaric: Good morning, my name is Boris Klaric.

00:03 Kimberly Tissot: And I'm Kimberly Tissot.

00:08 BK & KT: And you're parked in The Access Aisle.

[pause]

00:12 BK: On the Access Aisle we’ve talked a lot about the rights and protections of people with disabilities under the Americans with Disabilities Act, but there are still discriminatory state laws that confuse efforts to end different treatment based on a person’s disability status. Here in South Carolina as recently as two years ago, parents with disabilities could have their children removed and parental rights terminated just because they had a disability. The good news is, in South Carolina disability rights activists stood up and worked alongside legislative partners to bring about the Persons with Disabilities Right to Parent Act and with me today is one its architects, Kimberly Tissot.

00:47 KT: Thank you. Yeah, yeah. So I think a lot of folks who have disabilities, men, women, everybody, there's always a desire to be a parent. Sometimes that course to become a parent can be difficult. It could be difficult in a variety of ways, it could be because somebody's disability is directly impacting somebody's ability to actually naturally carry a child. It's also moving forward with going to the next steps of adoption. And then also sometimes when parents with disabilities do have their children, there are difficulties with what the outside folks, the community thinks that they're capable of doing and sometimes their rights are violated.

01:37 BK: Absolutely. So what brought you into that realm of advocacy that you really wanted to help parents with disabilities?

01:45 KT: Well, I have a physical disability and I've had one since I was two. I had cancer and some of the side effects completely kind of wiped out my ability to naturally have a child. But... So I always wanted to be a mom. I knew whatever it was, I was gonna be a mom. So I... We did a number of things once I got married and we did a number of things with going to fertility clinics, tried surrogacy, got a egg donation, a number of things, and all of that failed. And when we went to go adopt, we decided to adopt from our state because we did know that there are a lot of children in our state that need forever homes.

02:32 BK: Absolutely.

02:32 KT: And we could be one of those forever homes and so we felt like we were ready to be a parent and when we went to our state's child welfare system, the first session of learning about adopting, we were told that people with physical disabilities like myself are not allowed to adopt. Of course, I always laugh and tell people, "Well, they did not know who they were messing with." You never know who's a disability rights advocate out there. And so I did a little bit of investigating within the system and learned that this was not a policy of theirs, that this was just a staff member's perception of who can and can't adopt a child from the state's child welfare system. So we did do some pushing back. Luckily, we do have federal legislation that protects the rights of people with disabilities, so we were able to pursue the adoption process. We were very lucky and we did end up with a very young baby. And he's nine years old today and is adopted. But it should have never... It should have never been a fight, especially when there's so many kids that are waiting to have families. But the perception of what I can and can't do because of my disability got in the way. And I heard stories and especially in my role as the Executive Director here, we heard that children were being removed from very great parents.

04:17 BK: And sometimes at birth.

04:18 KT: At birth because of what they, what doctors and nurses thought a person is not capable of doing. And so we just kept hearing horror stories and we did some digging into our own state law and learned that we actually had a law in South Carolina that said that people with disabilities could have their child removed and their rights can be terminated simply on the basis of who they are. So obviously that was a huge rights issue, but also violated the Rehabilitation Act of 1973, which states that any state agency, federal agencies receiving federal funds must accommodate people with disabilities and provide equal services which includes adoption and foster care. And it also violated the Americans with Disabilities Act. So we decided to move forward with writing a law that would remove any type of discrimination for the rights of parents with disabilities and prospective parents. So anybody who's wishing to become a parent, we wanted to make sure that their rights were protected.

05:33 KT: And our first bill actually died in the Senate just because of some politics. They were trying to tack on bills that did not really relate to the legislation that we wrote. But that, the first bill was very complex because it did include reproductive health. So any type of protection for individuals needing assisted reproductive treatment. So like your IVF and surrogacy and all of that. So that first bill failed and we decided to do a more simple bill that would just protect the rights of anybody who might go into the court system either through Department of Social Services or divorce situations, a family court, that would make sure that no one is losing their child because they have a disability. And it also, we wanted to make sure also that the Department of Social Services, was adequately providing services to parents with disabilities so that they can keep their child. So if there's an example that Department of Social Services was to become involved in a family's life, and the mother or father had a disability, The Department of Social Services has to show reasonable effort that they provided reasonable services with accommodations to be able to reunite that family.

07:01 BK: And that's based on this specific individual's needs and the kind of supports that they would need for their specific family and child and what they would want.

07:12 KT: Absolutely, absolutely. And it has to be individualized, which is also in the wall that it's not just a one-size-fits-all, cookie cutter approach to being able to teach parents with disabilities how to parent. And we have to remind folks, and it's really a sad situation, in what, we're in 2019 approaching 2020. We have to remind folks that people with disabilities are no different, they may just do things a little bit differently, but it does not take away their right to be a great parent, and sometimes their supports look a little bit differently but everybody, people with and without disabilities, they all parent differently.

07:54 BK: No two families look the same.

07:55 KT: Not at all, not at all. And so we do have to keep reminding folks that. So just because a mother with a physical disability, cannot physically carry a child around the grocery store does not mean that they can't wear a harness or they... A carrier, not a harness, [chuckle] or it does not mean that they cannot push their child in a stroller. And that's how I was able to carry my little one around when he was a baby, as I pushed him in a stroller using my crutches.

08:28 BK: What we've seen a lot of times when we're looking at other court cases, there is a pending court case out in Kentucky, where a child was removed at birth from a parent based on not only the presence of a developmental disability, but they factor in that parent's IQ score. How often does IQ come into play?

08:51 KT: It comes in to play all of the time. IQ scores really mean nothing. It allows you to get services, it allows you to be eligible for services, but it should never be used against you in anything that you do. And research also shows that if a parent has "a low IQ score" that the evaluation process should be different to evaluate their ability to parent. So it should be more in-home assessments. Watching the parent actually parent the young child or the teenager. And so we are seeing a lot of discrimination on the basis of somebody's intellectual disability and we've got to continue proving, you cannot just hire a psychologist to do a standard parenting evaluation because they are... A lot of times they are biased, they do think that the parents because of their IQ score, they cannot see past their ability to learn new things, to be able to parent, to nurture that child. And so we're having to do a lot of education with the way that our Department of Social Services is hiring these evaluators. Unfortunately there are only two qualified evaluators in the country and they are not in the state and so it does require a little bit of additional funding, but being able to pay an outside evaluator to come in to clearly assess a Parents' ability is priceless.

10:39 BK: It's a justified expense to help keep communities intact.

10:43 KT: Right, and it's something that the Department of Social Services should be doing because they do need to also prove that they have provided so much services to make sure that this parent is reunited with their child, and so getting an outside person to come in who is qualified is critical, but IQ scores does not tell you, does not set the tone to how you will be able to be a parent.

11:09 BK: And even looking at the diagnosis of disability itself, do you think that two people with the same type of disability are living in the same way.

11:19 KT: There is never that situation, so there's a lot of stigma out there that people with autism are all the same. No, absolutely not, people with my disability, which is I have one leg, we all do something differently. I walk on crutches, probably a lot differently than anybody else with one leg and I do not use a prosthetic. And so, everybody does something differently, so it should never be a cookie cutter approach, there should never be a folder for, oh, parents with intellectual disability, let me pull this brochure out to learn about what they can and can't do. It's very individualized.

11:53 BK: So we've talked a little bit about the things that the law does and the kind of drafts that you had to go through and changes. What are some things that the law does not help with?

12:06 KT: So at the moment, it does not help with the assisted reproductive health piece. So if a woman is needing services, reproductive health services like egg donation or surrogacy, that they have rights within those clinics. So that is one thing that we are missing and that would probably be a second piece to this legislation eventually.

12:31 BK: Okay, so if I am a parent, a current parent or prospective parent with a disability and I want to kind of explore my options, how would I get started?

12:42 KT: Yeah, absolutely, I mean contact your local Center for Independent Living, contact us. We can... We can talk through all those options and look at everything that is possible. If you have a goal to become a parent, we will help you achieve it, one way or the other, and it could be fostering to adopt, it could be looking internationally, it could be a number of things, but it could also be carrying your own child. A lot of folks with disabilities also do not know that they could have a child biologically. And so, we are here to be that support as well.

13:16 BK: And conversely, if I'm a parent of a child and I have a disability and I feel like my rights haven't been respected and I haven't received the supports that I'm entitled to, what steps would I take to make sure that those rights are respected?

13:32 KT: Absolutely, and I would tell folks to contact us, contact our organization, and we can look at seeing if their rights are being violated, seeing if services are being provided effectively. And if not, we can always file a complaint with the Department of Justice, if somebody's rights are truly being violated.

13:54 BK: Absolutely. So we see... I think, it's pretty clear all the good that can be done for communities at large with legislation like this. How common is this type of law nationwide?

14:06 KT: It is not. So we were the 13th state to get legislation that specifically protects the rights of parents with disabilities. And so, there has been more since, I think, we had three bills in the nation that passed last year, so folks are catching on really quickly. So it is a little bit of a movement right now to look at the rights of parents with disabilities.

14:32 BK: And what kind of advice would you give to parents in states that don't have this legislation?

14:38 KT: I would make sure that they make this known, make the issue known to the protection and advocacy systems, to Centers for Independent Living, and be that change agent, making sure that the state is reacting and getting legislators involved. Because I know that when we wrote the bill, a lot of legislators were appalled that South Carolina had legislation that said a child could be removed on the basis of disability. So making sure you share that story, pointing out that the law is bad and it is discriminating. And I think a lot of folks will listen to you on that. If there's never abuse or neglect, there should be no reason why the Department of Social Services is even involved. And that's still happening today though. Even though we do have legislation, we still have to keep making sure that folks are following it.

15:39 BK: Absolutely. The next step after passing legislation is always making sure that enforcement is consistent, and I'm sure anybody that's been following the ADA is well aware of that.

15:49 KT: It's a ongoing process. So I do know that our state does have a... Our state's child welfare system does have policies and procedures in place when working with parents with disabilities, but it's an ongoing training need for them as well. So making sure that we are changing perspectives within the Department of Social Services too, because a lot of folks, just like how I was discriminated within the agency, it's perception.

16:14 BK: Yeah.

16:15 KT: It's somebody's idea of what they think that you can and can't do.

16:20 BK: Okay. And what are some things that the average South Carolinian can do to help change that perception that professionals have towards people with disabilities?

16:30 KT: I mean, really educating. Just keep educating and have families. Let's show everybody that we can be parents and we can be successful parents. And I love hearing stories where daycare centers are changing their roles because they're realizing, "You know, we do have parents with disabilities. So I think we need a ramp out front of our building." And so, learning how to comply with the ADA, because they're seeing more parents with disabilities. And also, the neat thing about our legislation is that it is cross-disability. It's not just one disability. There is some legislation throughout the country that is happening where it's only protecting the rights of blind parents, and we want to make sure that it is cross-disability, because research shows that people with any type of disability can be a great parent. And we've got to make sure that we're protecting their rights.

17:27 BK: Awesome. Well, thank you so much for your time. I think this has been very enriching.

17:33 BK: Yeah, yeah. Well, thank you Boris.

17:35 BK: Not a problem. And for those of you listening at home, thank you so much. You can subscribe to our podcast. It's available on anywhere that podcasts are including, Spotify and Apple Podcasts. So go find us, subscribe and stay up to date on Advocacy for People With Disabilities and Able South Carolina.

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On this episode we explore the untold history of the ADA with Dr. Lex Frieden, one of its architects. Curious how the space shuttle Challenger, a New York prisoners union, and Oral Roberts helped shape the ADA? Find out in this episode!

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00:11 Boris: Well, thank you for joining us today. With me is Dr. Lex Frieden and many people consider you to be one of the founders of the Independent Living Movement in the United States. Can you recall the moment that you heard that call to be an advocate?

00:32 Lex Frieden: Well, yeah, I think that was shortly after I broke my neck. I was in a car wreck in 1967, I was a freshman in college at Oklahoma State University, I had been there just a few weeks, and it was coming up to the Thanksgiving break. I had not been home, my home was only about two and a half hours away, but I'd not been back home since I'd been away at college and was looking forward to the break. Typically, most students would take a week off there, even though Thanksgiving fell I think on a Thursday. And on Friday, as most of us were getting ready to go home, I went to my psychology class and the instructor there said that she was gonna fail anybody who didn't show up to her class next Monday. Most people were gonna ditch whatever classes they had that week to spend the whole week away at home, but she said anybody who missed her class would fail the class. Not just lose the points for the day, but she'd fail them because she felt like she had to be there and therefore, the students had to be there and she didn't want anybody to skip on her class.

01:51 LF: So we were kind of upset about that, everybody who was in her class that afternoon were kinda upset. She did do us the favor of saying, she... Then we can come to any of our sections. If we wanted to show up at her 8 o'clock morning section, then we could go there and leave for our vacation, but that meant there were two days that we missed of the vacation and we had to stay there at school. So a few of us decided, as adult 18-year-olds might do, that we were gonna spend the weekend without going to bed and drinking our way through the various bars in the town that sold to underaged students. And we made it to about midnight on Sunday when we had a head-on collision with another car and everybody jumped out of the car, I was in the middle of the back seat and I couldn't move, I couldn't move my arms, I couldn't move my legs, I thought I had two broken legs and two broken arms. That was a bummer.

02:55 LF: I learned shortly after that, that I had a broken neck and wound up going through surgery and rehabilitation and so on. I had the good fortune to be rehabilitated at TIRR Memorial Hermann, where I now have a laboratory and where we have our independent living research utilization program and I was a patient there at TIRR for three months. And when I left I applied, not to go back to Stillwater because the campus there was totally inaccessible but there was a new college in the town, Tulsa, where I lived. And it had been built new, built from scratch by the evangelist Oral Roberts, and it was totally level entrances everywhere, wheelchair access, elevators in every building. They were even, and this was remarkable at the time, video taping all their courses. And I thought, "Well, if I have to miss class one day, that's gonna be a perfect opportunity for me to watch one of the video tapes and catch up.

04:33 LF: So I applied to go to school there and received a letter stating that I was not to be admitted and I called the dean Of Admissions who spoke to me and I said, "I think perhaps you got my... I got a letter that came off the wrong stack. I know you process these quickly. And perhaps an assistant, a secretary might have picked the wrong one up and put it in my envelope." And he said, "I'll get your file." And he said, "No, no, Mr. Frieden," he said, "You've got the right letter. You'll not be admitted to our school." And I said, "Well, if I could, did you get my grades from high school?" He said, "Yes," he said, "I saw you were a good student." I said, "Did you see I was valedictorian of my class? I had straight As." He said, "Yes, yes, yes, good student," he said. And I said, "Well, did you see my college admission scores? I was in the top 5% elimination." And he said, "Well, you're a good test-taker, too, Mr. Frieden." And I got to thinking, "What could possibly be wrong?"

05:45 LF: I said, "Did you see that I had a scholarship, the presidential scholarship that'll pay my way through college?" You don't have to be concerned about my family not being able to pay the tuition." And he said, "No, no," he said, "that's good that you have that scholarship." And I said, "Well, are you sure you gave me the right letter?" And he said, "No, no, I'm sure." I thought about it for a minute and then I thought, "Well, it may be they're trying to dissuade students from coming there, who are gonna be distractions to the other students or maybe they're dissuading students who might need help from the other students and therefore distract them from their studies. And I said to him, "You know, I have many friends who are students there on the campus, classmates and friends who would be happy to help push me from one building to the other if my motor stopped and who would be glad to help me." And he said, No, that's not the point. The point is you don't meet our qualifications for admission to the university. And I, at that point, I dropped the telephone; I was holding a phone that was connected to the wall. When I dropped the phone, it fell on the floor. I didn't speak to that person again. My mother walked by me, I was in the kitchen, she said, "You need me to pick up the phone?" And I just shook my head, I couldn't speak to her. I couldn't tell my mother, my father, my sister, I couldn't tell anybody that I had been turned down for admission to the university because I had a disability.

08:13 LF: It was embarrassing to me, at that point, it was disheartening, it was frightening, it was a pit in the stomach. And I've often said, particularly to groups, and I'm speaking of people who I presume must have experienced discrimination because of their race or other characteristics. I've often said, "I don't honestly believe people can understand or appreciate discrimination, unless they felt it in their gut." It's not something you can describe and articulate with words and that's what I felt. It just, at some point, you can say, it left an empty spot. At other points, you can say it was disheartening but you can't describe that feeling. And that was the first time in my life that I ever felt... I was told that I couldn't do something that I knew I could do on a basis of a characteristic for which I had no control. And that's probably the best definition I can give for discrimination, people are prevented from doing something that they can do simply because of a characteristic that they have about which they have no control.

09:37 LF: So I was depressed, I was... I didn't know what I was gonna do. A couple of weeks later, my father, who just mentioned this experience at his workplace, came home and he said, "We ought to go and explore the University of Tulsa," which was across town. I said, "Dad, we've been by there, that's an old school. Like Oklahoma State, they've got old buildings, they've got steps on all their buildings, they're trying to emulate an Ivy league school with all the steps in the Ivy and all of that. It's not gonna work." And he said, "Well, Tom, down at the office, graduated from there, and he knows the dean and he'll call the dean of students up there, and maybe we can just talk to him. Wouldn't that be okay?" And I said, "Okay, fine. I mean, whatever, it's not a big deal to me." And so we drove the next afternoon to the university. I got out of the van in my wheelchair and we couldn't get up the curb, couldn't get out of the parking lot. There was no way to get out of the parking lot onto the sidewalk, much less to the dean's office, which was up a floor.

10:57 LF: And the dean came out there on the parking lot, introduced himself. And he brought another dean, this was the dean of students, he brought the dean of education, Dean Fernow and Dean Harry Stephens. And the two of them said to me, "We've looked at your resume, you'd be a great student, you're the kind of student we're trying to recruit here and we'd love for you to be here." And I said, "Well, I don't really imagine myself in an environment where every place you turn, every place I'm supposed to be, there are steps." And he said, Dean Stephens said, "Well," he said, "the students here are good students. They'll be glad to carry you up the steps." And I said, "Well, I appreciate that. But to have students doing that every class I go to, all day and all week and all semester, to me, it just wouldn't feel right. I, frankly, would be afraid of my own safety after a while, and the safety of those students who were lifting me, it's a long flight of steps. And to do that over and over again, just doesn't make me feel like a good thing to do."

12:21 LF: And the other dean said, "Look across the U there. Clear on the other side, you see that construction?" And I said, "Yes," 'cause there was some building going on there. He said, "That's the first building we've built in 15 years on the campus and that building is gonna have a level entrance and it's gonna have an elevator on it. Would you consider going to school? Because we have that building? And I said, "Well, that's great. What will you teach there?" And the other dean said, "Oh, that'll be Biology." And I kinda chuckled and said, "Well, that won't be me 'cause I'm not interested in biology and I doubt that I would be a very good student." And the first dean said, "But wait, we're not married to that. Take the catalog, figure out what courses you want to take, call us and they will be in that building."

13:30 LF: And to me, that was like an awakening, that was like a miracle. They used to say the evangelist, Oral Roberts had miracles, but I never saw one at Oral Roberts. And this one across town at the University of Tulsa, they made the miracle. And that lesson has stayed with me all my life. I've used that as an example before and quite frankly, that was an example that we used in the ADA, the battle for the ADA. I used that example more than once in senators and house members office when they ask about, "What does this idea of reasonable accommodation mean?" And in the 1970s, I think about 1974 when they were working on the regulations to the Rehabilitation Act of 1973, that included Title IV and Title V. The first ADA, really. They invited me to Washington, the Labor Department had a committee that they appointed to give recommendations into the regulations. And we were sitting around the table and somebody said, "What do we call this when we're finding a substitute that's reasonable?" And I said, at the time, "Well, here's what happened to me at the University of Tulsa and I would consider that to be a reasonable accommodation".

14:57 LF: And that phrase kinda caught on obviously and was incorporated into the ADA section, if you will, of the Rehabilitation Act, the first non-discrimination of protecting people with disabilities. So the experience that I had in Tulsa, after my neck was broken, probably framed the rest of my career and that experience was enough to motivate me to study, at the time, the Architectural Barriers Act of 1968, the Rehabilitation Act of 1973, to work on the regulations, to help found the American Coalition of Citizens with Disabilities. Judy Human, whom we've interviewed, Ed Roberts, whom I've had the ever little pleasure of meeting. [15:55] ____, whose passed for many years, a woman named Diane Latin, a man who recently passed, Elmer Bartels. A group of us got together with Fred Fay in Boston, Massachusetts and agreed to form an organization called the American Coalition of Citizens with Disabilities. That was about 1974 and we kept that organization together pretty well. Frank Bowe, we hired a deaf man who had graduated from New York University as our executive director and Frank was a great leader until his unfortunate passing seven years ago. So that's a long answer to your question.

16:51 S1: This year, we're gonna be celebrating the 29th anniversary of the ADA. So I wanna talk to you a little bit about the years that led up to its passage. You were originally appointed the Executive Director on the, what we now know as the National Council on Disability, by President Reagan in the early '80s. What was your experience working inside the Reagan Administration?

17:13 LF: You have to back that up a little bit because I had been in Texas and working nationally with the ACCD. And I had met a man named Justin Dart and sort of educated him on the disability movement, the Independent Living Movement, and he became an advocacy leader, as you know. And Justin's father had been one of the primary funders of the Reagan campaign. They lived near one another in California. And Justin benefited from that relationship to his father, who by the way had disowned him some years before. But Reagan didn't know that. And so President Reagan, when he was brought a list of people to be on this presidentially appointed counsel as members, selected Justin Dart to be the vice-chair person. And the council needed to hire an executive director. They needed an executive director was included in the law. It was newly formed. Before the '83 amendments to the Rehabilitation Act, the council had been just an advisory body in the department of HEW.

18:32 LF: But as a result of a number of dynamics, the council was made an independent federal agency. And so they had the opportunity to hire fresh staff, starting with an executive director and Justin recommended me. And the other council members agreed to interview me. So I flew to Washington, did an interview. The council members who were on the committee were pleased with me. Thought it would be great to have somebody from outside the proverbial beltway to come in and lead this new council. Well, they recommended me to the president and everybody thought it was a done deal, I was gonna move to Washington, be the executive director. But a few minutes before all the papers were to be signed in The White House, the Director of Presidential Personnel got a message that Lex Frieden was not a Republican. He was a Democrat. In fact, he was a delegate to the competition, Mondale. I was working as a Mondale delegate. Had been to Democratic Conventions before that and nobody had asked me. When they interviewed me, they never asked me, "Were you a Republican or a Democrat?" It didn't make any difference. I was a leader. I was a professional. Why would that have made a difference? They didn't think so. They didn't ask me. And I didn't feel compelled to volunteer and who cared?

20:07 LF: So the presidential personnel guy gets this message and he's a little shocked and he calls the chairman of the panel, Mrs. Parrino says, "You're sending a recommendation over here to the president to work for him and the guy worked for the competition, what are you doing?" And she said, "Well, I don't know anything about that. You need to deal with him." So the guy calls me and he says, "Mr. Frieden," he said, "We're not gonna be able to carry through this appointment unless," he said, "you have somebody call who can vouch for you and they need to call right away, probably within the next 30 minutes." And I'm thinking, "I don't understand, I don't know what I'm supposed to do here. Here they've given me 30 minutes to get a recommendation and yet, they've already interviewed me and been through this vetting process."

21:10 LF: And I thought for a minute. I was sitting in my office and I thought about who I might know that could recommend me and tell the President that I was safe? And I remembered a woman who had made my bed and the beds of some of my colleagues when we lived in a kind of communal living situation a few years before, people with paraplegia, quadriplegia living together, sharing an apartment setting. And this woman had been, I remembered, the wife of the owner of one of the television stations in Houston, Channel 13, his name was Willard Walbridge. And he was kind of a famous guy, and I knew Mrs. Walbridge, and I thought about calling her. But then I thought, "Well, I don't have time to talk to her and explain it. I'll just call Mr. Walbridge. I'd never met him, never talked to him, I'm just gonna call him and tell him the deal."

22:10 LF: And so I called there and I spoke to his secretary, kind lady who said, "Well, I'm sorry Mr. Frieden, I'm sure Mr. Walbridge would like to hear your story." I told her why I was calling, and she said, "But he's busy right now. I'll get him to call you when he's finished with his meeting. It should be in the next five or 10 minutes, and I'll tell him what the call is about." And I said, "Well, do you think he... " I was just kind of curious at that point. I said to the secretory, I'd said, "Well, do you think maybe he knows the President?" And she said, "Well, judging by his mail, yes, he does." [chuckle] And I'm thinking, "Well, boy, oh boy. What... This is the best cold call a salesman ever made." [chuckle] So I never heard back from Walbridge and I didn't know what to think about that, and haven't thought about anybody else. And I remembered from Tulsa, from going to church there and being in the community, there was an oil man named Robert Parker who was very politically active. And as I recalled, he was a Republican and I had met him at the church. He was a family friend of ours.

23:26 LF: And so I called Mr. Parker and spoke to him, and Mr. Parker said, "Yes," he said, "I know the President." He said, "I'll put in a call for you." And I said, "Well, here's the number of the personnel director who called me." He said, "Okay. Well, I'll do that." So I waited a few minutes, and the 30-minute hour came across and the phone rang, and I didn't know who it was, and it was the director of Presidential Personnel. And he said, "Well," he said, "start packing." And I said, "Excuse me?" He said, "Well, I guess you're coming to Washington." And I said, "What happened?" [chuckle] And he said, "Well, a guy named Parker called me, that was fine," he said, "but your buddy Walbridge talked to the President." And I said, "Excuse me? I gave him your number." He said, "Well, he apparently didn't have time for underlings. He called the President." And I said, "Well, what did he say to the President?" He said, "It was a short conversation." He said, "He told the President there wasn't a good Republican in Texas who hadn't first been a Democrat."

[laughter]

24:44 LF: And so that's the way I got to Washington. The President was moved by Mr. Walbridge who probably made a lot of donations to his campaign as well, and I was glad to have the opportunity to work with Sandra Parrino and Justin Dart and Joe Dusenbury and the whole array of 15 members of the council. And they, from the very beginning, wanted to do something to change the lives of people with disabilities. I was apprehensive at first. Anybody in the disability community would have been... Republicans didn't have a good record on disability. Reagan had never really talked about disability himself. Nobody knew what his attitudes were, but he did appoint 15 people, and among them, people with disabilities and parents of kids with disabilities. And those parents were, they were among the best advocates I've ever met in my life. There was a deaf actress who was on the panel, and there was a woman who owned a bank in California, and she was on the panel and she had two children with disabilities, and it just went on and on. These people knew what they were talking about and they wanted to do something radical and we proposed the ADA.

26:03 LF: Now, a lot of the disability community was not in sync with us on that. They, in the first place, didn't trust the Reagan Administration. They didn't trust the Republicans, in general. They wanted to amend the Civil Rights Act of 1964. That was not our approach. We had a different approach. We wanted a free-standing bill for people with disabilities. In fact, I had done some research and discovered that on several times, several occasions in the past, amendments to the Civil Rights Bill that included people with disabilities had been made and they were fought by the civil rights community. The civil rights community didn't wanna include disability in their law. And so it was our conclusion that, fine, we'll just make the Civil Rights law protecting people with disabilities, which is what we wound up proposing. And we had a deadline to report to the President on our findings, was to be a report making recommendations for laws, and our deadline was February 1986.

27:21 LF: So throughout 1984 and 1985, we developed our report. We wrote the 13-page draft of the ADA. We put that in a report called Toward Independence. We got input from many, many groups. We had hearings all over the country. Justin Dart drove his pickup around every state at least twice, having little dinner meetings with people and consulting with them. We did a lot of things to gain input over those two years and we had the report together. That was another story, by the way. We almost didn't get the report done on time because we didn't realize that the federal printing office is the only place you can get a federal report printed. You can't take it to Kinkos. [chuckle] You have to take it to the GPO, the General Printing Office, Government Publishing Office. We took it over there a month before it was supposed to be published and they told us their schedule didn't allow for us to get it published on time. It would be six months. And we said, "Oh, that's wrong. We have to get our report done on time." They laughed and said, "No federal report is ever done on time, so don't worry about it."

28:40 LF: And I said, "You know, I'm from Texas and things get done on time when somebody asks us to do 'em and we're gonna get it done on time." They said, "There's no way you can do that, with one exception." And they told us what the exception was and that was to have a... [chuckle] The work done by a federal penitentiary. That's the only exception in the law. And as far as we knew, nobody had ever used that exception. But I went to the federal penitentiary in New York, spoke to the warden, spoke... And get this: There was a prisoners' union. So I spoke to the prisoners' union president. And at this point, in order to get it printed, they would have had to work through the holidays at the end of the year. And so the prison... [chuckle] The prisoners had to vote whether they would take this contract to print this report. The prisoners' union president read to the prisoners some of the report. And they understood what it was about, the rights of people with disabilities, and they agreed unanimously to work weekends, holidays, overnight, whatever needed to be done to get this report printed and to us in time to deliver it.

30:06 LF: So we had, at the same time... This is December. We're making an appointment with the President to meet early February 'cause we intended to have our report done and take it to the President. The law said that it will be presented to the President. We were too naïve to understand that that meant put it in the mail with the address of the President on it, and the President never sees the report, you see? It all gets read by all the staff and all that thing. We thought it meant, take it to the President. So we made an appointment and darned if we didn't get one. You see, we were ready with our press release. We even hired... We used private funds that had been donated by some of the council members to hire a PR firm to organize this big blast we were gonna have after the President endorsed the ADA. And well, we were ready to go. We were all dressed and we had our press people waiting in a hotel across town. There were to be, I think, four of us representing the council, who would take the report to the President. And we were dressed and ready to go when the spaceship's Challenger unfortunate explosion on the launch pad and the... At that point, that was just a few hours before we were to meet the President.

31:37 LF: And this whole thing was scripted, the President was gonna say how glad he was to receive this report, to endorse it in a few words and it would have been beautiful. Ronald Reagan on the steps of The White House endorsing the ADA, and it didn't happen. The President's schedule was cancelled. We couldn't get another appointment. He was gonna be in mourning, no appointments or anything for the next few days. After that, the calendar was already packed, scheduled ahead. The only thing the appointment secretary could say was, "Have you tried the Vice President?" Which didn't give us much good feeling at that point. I mean, we were saddened because we lost those astronauts and we were... I can say doubly saddened because we thought for a moment that we had lost the opportunity to start a fire that would lead to the passage of the Americans with Disabilities Act, but it didn't happen. And then we thought about meeting with the Vice President, and the Vice President was George Bush and nobody had ever heard of him. I mean, at that point in time, it was like who knows who the Vice President is today? You only hear about the President, right? Who is the Vice President anyway? Half the people can't tell you.

33:01 LF: And that's the way it was then. But what else were we gonna do? So we said, "Let's, okay, meet with the Vice President." And I think it was the following week we went to the West Wing, to the Vice President's office there. And it was almost prophetic 'cause I don't know if you know who James Brady was, but James Brady was the press secretary to the President. And early in his tenure, there was an assassination attempt on the President at the Washington Hilton. And James Brady, the press secretary, got between the shooter and the President and took a bullet. And the bullet went in his head and he had a severe head injury and had difficulty... As I recall, he couldn't speak. He was famous for giving a thumbs-up to everybody he met, had a loving family and he... The President was so fond of him and respectful that he kept an office for him in the West Wing. And so Mr. Brady would come to work there and sit during the day and greet people and so on and so forth, and it was almost prophetic. When we went in that morning to see the Vice President, James Brady gave us a wave and a thumbs-up, and I thought, "You know, that's pretty cool."

34:31 LF: So we got to the office, outside the Vice President's office, and Boyden Gray, big, tall, drink of water from North Carolina. The President's lawyer, Boyden Gray met us and gave us a little briefing and said, "The President has read your report. We gave him a copy and briefed him yesterday." And he looked at me and he said, "You're from Texas, aren't you?" And I said, "Yes, sir." And he said, "Well, be sure to tell the President, the Vice President, you're from Texas, because he likes Texans." And I thought, "Well, that's kind of cool." We were also told by an assistant there that this was just a so-called photo op, that we would have 10 minutes with the Vice President. He would take the report, the photographer would snap pictures of us handing it to him. We'd do it in a certain part of the room in front of the fireplace, and then we'd be out of there. And we thought, "Okay, well this is fine. We'll have our pictures and we'll go and do what we have to do. At least we can say we delivered the report as we were supposed to do."

35:42 LF: So we were escorted into the Vice President's office and all showed where to stand for the photos, and we did that. That was me and Justin Dart and Mr. Milbank, Jeremiah Milbank, who had been the treasurer of the Republican Party and Mrs. Parrino from New York who was the chairperson. And the four of us went in and stood by the fireplace and the Vice President came over from behind his desk and he took the report. There's some pictures of that. And we were... You know, we nodded and shook hands. I didn't even have a chance to tell him I was from Texas. And we all started to leave and he said, "Well, wait, where are you going?" And I think Justin said, "Well, we don't wanna take too much of your time. We were told this was a photo op, but thank you very much." And the Vice President said, "No, no." He said, "Come over here to the desk and sit down." And I'm like, "Did anybody tell the secretary that? 'Cause she's probably got somebody waiting to come in here." But he came, took us over and showed us where to sit next to his desk and he went around behind it, and he said, "You know, Barbara and I read this report last night."

36:58 LF: And I'm thinking, "Are you kidding me? Mrs. Bush was up reading to you at night?" And he said, "Yeah, Barbara and I read the report." And he said, "This rings home to us." He said, "This report hits us at home because we have two children, one of them with a disability who died, Robin, and we miss her terribly." And he said, "And we have a son who has a learning disability, a reading disability. And we've been concerned about their schooling, how they might do in school and we've been concerned about what barriers they might face because of their disabilities." And he said, "What you've said in this report makes a lot of sense to us, and I wanna do everything I can do to support you on this." But he said... Now, this was kind of funny. He said, "You probably saw the article in The Washington Post this morning. The title of it is, 'Where is George?'" And that article, you can go back and read it, but it makes a big deal about Reagan is the President, Bush is just kind of a hanger-on over there. He does nothing. All he does is... When the President doesn't feel like traveling to a state funeral, he'll send George. And George goes around the world to these state funerals, representing the President and the United States and that's about all he does.

38:31 LF: So Vice President Bush said, "You know, as you read, I'm just the Vice President. So I'll give the report to the President. I'll tell him that we met and that I would recommend that, and I'm sure he'll be supportive of it." But he said, "If in the future I can do anything more to help you, I'm gonna be there for you." And you know, you talk about, thinking ahead a little bit, he became the President within two years. Two years later, he was the President of the United States. And the first speech he ever gave to a joint session of Congress, what did he say? "I wanna see in my term an Americans with Disabilities Act pass that will protect people with disabilities from discrimination." Now, he did not name the ADA, but he did say, "I wanna see a law that will protect people with disabilities from discrimination." That's very... I mean, you know, you think about politicians making promises and stuff. This guy said, [chuckle] in that meeting in February of 1986, "If in the future there's anything more that I can do to help you, I will." And darn sure did, he do it. And he stayed with it until he signed it. So not many people know that whole story and many of them listening to this might have tuned out already, but it's a good story.

40:00 S1: It is. So it's been almost 30 years. It'll be 29 this week since the ADA was passed. Where do you think we are in terms of your original expectations in 1986, coming out of that meeting versus right now?

40:23 LF: Well, some of our expectations have clearly been exceeded, but we weren't clear of when. We should have been, but we weren't. We did not anticipate the World Wide Web. We didn't anticipate... We thought email would get better. [chuckle] We thought speech-to-text would get better. We even thought Text-to-Speech would get better but we never did anticipate what's happened with the explosion of electronic technology and communications. And so we didn't expect that. And then the question is would we have done anything different had we known it would happen? And that makes me think how well we did with the ADA because we tried not to make a law that really named all the ways one might discriminate or all those who might be discriminated against. That is, right there, that defines the ADA better than anything else you can do. It is a law that addresses discrimination on any basis, any basis that's tied to differences that may relate to disability in any way or that may be cast upon a person that has no control over it. So many different groups, I think, have benefited from the ADA that we didn't necessarily think of in the beginning.

42:00 LF: I will say this: We did have a lot of support from the gay and lesbian community when we passed the ADA and they were certainly aware of the implications of the ADA for people who were lesbian and gay. And I think that was important. We had the support of groups of veterans who had PTSD that hadn't really been defined as a disability at that point in time. We had the support of, at the time, finally when it passed, we had the support of the whole civil rights community. Maybe part of that was because we weren't messing with their law, but in fact, one of our recommendations in 1986 was that housing, laws that relate to housing be made to... Made clear that it should not... That it should include protection on the basis of disability. And as a result of that, the Civil Rights Act portion that deals with housing was amended in I think 1988. So the Fair Housing Act, which is a part of the Civil Rights Act, was amended and includes disability and that was a spin-off of our 1986 report. So we had an impact much greater than we thought on some areas. Among other areas, I must say I'm disappointed.

43:33 LF: The public accommodations, Title III aspects of the ADA have been fairly well-accommodated. What's frustrating to me is that people continue to build buildings without full access. They continued to violate the law when it comes to accessible parking spaces. I am frustrated by schools that don't provide adequate inclusive education in mainstream classrooms. I know that children with disabilities still are segregated. I know it's for so-called practical reasons. Some schools will defend that by saying they have specialists who are trained to treat and serve people with disabilities and therefore, they have them where they are best served. I don't think segregation is best served under any circumstances. And if I were the parent of one of those children, I would prefer that they were in a integrated classroom without a specialist if that was the option that I had. I would far prefer however, that the specialists were working in all the classrooms and I think they should be. I think all of those teachers should receive that training. So there are issues that still relate to segregation and full participation, but I'm disappointed it haven't been addressed in the area of housing.

45:01 LF: We don't... Despite the Fair Housing Amendments, there's not enough accessible housing and that many people are at nursing homes. Not because they can't take care of themselves outside the nursing home, but because they can't find a place to live where they can manage themselves. And that's ridiculous and we have to change that. That's the other thing that I think is important to say here. We are not now just 43 million people with disabilities, as we were in 1990. And now we're 53 million or 56 million or however many people there are with disabilities. Plus, 76 million baby boomers who will soon have disabilities. Plus, an array of other people who have been discriminated against on the basis of disability, even though they don't have disabilities. That being the excuse for the discrimination that occurs. So we're talking about a much larger segment of the community than we thought about when we were working on the ADA in 1989 and 1990. And I think all those people stand to benefit but they also have to be advocates.

46:16 LF: And that's the other thing I would say is that I'm disappointed that the aging community hasn't become more outspoken about the need for personal attendant services in the community, community-based services. They need to join the disability community and become more vocal about that. And if we join together, then we can affect the funding in Washington, we can affect the rules and regulations, we can be ensured that federally insured programs don't sponsor people in institutions or nursing homes. And nursing homes are institutions. So I don't care how you define it. The average length of... The average lifespan if you wind up in a nursing home is suddenly three and a half years. Okay? I mean it's a death sentence. Anyway, it's just wrong. And everyone will acknowledge, anyone that have any sense will acknowledge the community is a better option, but what are we doing to ensure that people have opportunities and accommodations in the community there? There we have gaps. And so we need to rally youth, the millennials are sympathetic but they haven't become activists yet. And we have a lot of challenges.

47:45 S1: Well, as a millennial, a lot of us are just now getting into positions in entry-level spots and in non-profits, like ABLE, where we can... We're starting to get our feet wet so we're out there, we're working, but we're... We've got, like you said, we've got a lot ahead of us and a lot to work towards and a lot working against us. But what in your opinion do you think will be the next big unifying fight that will bring people together for disability rights?

48:17 LF: Well, that's a really good question. It's hard for me say, because I'm biased a little bit by what I know. And what I know is that this aging and disability matter is a crisis of great proportions. And Bob Cosca, my friend and colleague for many, many years, Bob says, "When the old people start dying in the streets, the politicians are gonna start... Gonna come running and they're gonna wanna solve that problem." And next year is not only the 30th anniversary of the ADA, but maybe more importantly, to people with disabilities and advocates, it is a presidential election year. So I tend to focus my energy around, what are we doing to affect the election of a president who will be supportive of full participation, equal opportunity for people with disabilities, rather than celebrating 30 years of ADA? And in that regard, I do think that if the politicians figure out that if they can align all the disabled and aging people in America, they can get elected president. I'm certain of that.

49:47 LF: If you take all the old people and the kids that are trying to figure out how to care for their parents and love ones, and you take all the disabled people and the families who are concerned about them, and you work on a platform that would say, "We need community-based services that will enable people to work and be sure that their loved ones are cared for in the community and not cast away in a nursing home, that we can get help in the home, that we can get the community-based support services," that would be one platform that I guarantee you could win a presidential election. And I don't know if anybody has the wherewithal. When Bush, people don't know this... But the Bush campaign chairman was a young, he would, at that time, he would be equivalent to a millennial. He was from South Carolina, his name was Atwater, Lee Atwater, Lee Atwater. And Lee Atwater, young man, went to Bush and said, "I can get you elected President because I've done a lot of research on how the states vote, and what the issues that are gonna affect people's vote in the States are." And Atwater, according to some histories that I've read, was the first campaign manager of a presidential campaign who really used analytics to help the campaign figure out how to get the votes that were necessary to win the Electoral College. And that's where the Southern strategy began with Lee Atwater, in South Carolina and through the South-Eastern states.

51:29 LF: Atwater, at some point, figured out the disability message was a winning message. And that reinforced Bush's natural inclination to support disability. If the campaign chairman, had said, "Stay off that subject," it never would have been brought up. But Atwater said, "Anytime you get a chance to talk about disability, do it." And therefore, the night before the election, and you can go back and watch the tapes, like some of my students would do this. The night before the election, Bush paid for 30 minutes, the Campaign paid for 30 minutes on a national broadcast. And in those 30 minutes, Bush laid out what he would do if he were elected President. And he talked about this disability rights law. Atwater wrote that speech, and was responsible for that strategy. And I think if some strategists today, be that a candidate or a campaign chairman, or whomever, put together what we know now about the needs and soon to be greater needs of the community for services that we know best how to provide and what's needed, people with disabilities and disability advocates, that would be a winning strategy today.

52:56 LF: I'd love to see that happen. And if it doesn't happen, at some point, Bob Cosca's theory about people dying in the streets may be enough to rally the politicians, but that's almost too little, too late. Now I think we have the opportunity to make some significant changes in policy and direction and with leadership, we could really be a model for the rest of the world.

53:25 S1: Yeah. Well, thank you so much for your time and your insights, this has been absolutely fantastic. Is there anything you'd like to say in closing?

53:37 LF: Well, yeah. You've mentioned the millennials, I wanna give you one of the press secretary's thumbs-up, I really do, I love millennials, I love the Z generation as well. But I'm telling you that my students, most of whom are millennials, and my good friends, Maria Town just left Houston as the director of the Mayor's Office on Disability, and moved to Washington to be the Director of the American Association of People with Disabilities. Maria Town, Rebecca Cockley, you and others whom I know, you have to grab this opportunity and be leaders. And bring in with you the rest of the generation who is, I would say, probably this is the first, the millennials are the first generation that have the wherewithal, given all the technology, given all the knowledge, the good education, they've had and so on. And you have more abilities, more resources with which to change the future for Americans, people with disabilities, of mankind than anybody else has ever had. And frankly, some of you realize that, and you're not arrogant about it. Which I appreciate it.

55:08 LF: So it is a unique time in history for disability, with leaders like yourself and a unique time in mankind's history to change global warming, to change the way we accept one another as individuals and not according to some kind of tag somebody's put on them. This is the generation that can do that. So I'm... Put up a candidate for president, I'll vote for you.

55:43 S1: Well, I will get right on that.

55:45 LF: Alright. [chuckle]

55:47 S1: Once I'm 35, I will be on there.

55:49 LF: Alright, works for me.

[music]

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In celebration of the 29th anniversary of the ADA - we've got a special interview with one of the most influential disability advocates of all time: Judy Heumann!

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Transcript

[clip of people chanting "Sign 504" in the background]

[clip of Judy Heumann]: We want the law enforced. We want no more segregation. We will accept no more discussion of segregation. And I would appreciate it if you would stop shaking your head in agreement when I do not think you know what we are talking about.

Boris: Judy Heumann is a lifelong advocate for the rights of people with disabilities not only in America, but across the globe. She is most well known for her involvement in the 504 sit-in protests but has also served under two presidential administrations, led the World Bank's efforts to work with governments and communities on disability inclusion, and was also responsible for federal legislation for programs in special education, disability research, vocational rehabilitation and independent living. On this episode of the Access Aisle, I’m joined by Able South Carolina’s executive director, Kimberly Tissot as we learn more about advocacy from one of the most prolific advocates of all time.

Kimberly: First Judy, we really just wanna say thank you for leading the way for us. You have been the most consistent advocate throughout the years with, I think every piece of federal legislation that there is about disability rights. So from our viewpoint, thank you so much for making sure that we have basic rights as citizens.

Boris: Absolutely.

Judy Heumann: I think what's important to say is that I appreciate your comments. I think what's very important is that all of the legislation that we've been able to get passed... Now, I'm 71-and-a-half, whether it's at the federal or state level, and we have, as you will know, 50 states, it's all because of the efforts of many people. No one person does anything. And I've been really proud to be able to play a role in major legislation and bringing... I like to network.

Kimberly: Yes.

JH: For me it's like a big part of who I am, expanding this circle. And I think when looking at Centers for Independent Living as an example, you and your staff at the center, it's very exciting to see how leaders are being brought into the movement and how you're a great example. And sorry Boris, I don't know you that well. But Kimberly really over the years I think has been making a big difference in the work that's going on in South Carolina and more broadly. Congratulations on the award that you're gonna be getting from NCIL this year. And I think that illustrates the fact that no one person does anything. So I wanna thank you also.

Kimberly: Oh thanks. So you've been involved in so many pieces of legislation and you've been part of everything, I think again. And so Section 5O4, IDA, ADA, your international work even, and your business development work. And then, of course Centers for Independent Living and the disability rights movement. Tell me about the time when you first realized that you needed your voice to be heard. What was that moment like for you?

02:45 JH: I don't think there was a moment. When you're younger you don't... Regardless of disability, you're not really thinking about amplifying anything, right? You're just kinda living in your life. And I think what happened for me was something which was gradual. So in my experience in the 1940s and '50s was that we had no laws in place, and basic things like going to school... I use a motorized wheelchair, I don't walk, I had polio. At that point there were no motorized wheelchairs. I was using a manual wheelchair that my parents pushed because I wasn't strong enough to push the chair by myself. So when I was denied the right to go to school when I was five, obviously, there was nothing I was gonna be able to do, but I was learning from my family. And I think many of us can speak about the role of our parents who didn't really understand what discrimination was gonna look like.

Kimberly: Right.

JH: And even with our laws now and you were living during IDEA so it's interesting to hear at some point your story too. But for me, it was as I got older and realized that there were certain things that I needed to start doing. That I really... My parents were pushing for things that I didn't necessarily push for. One example for me really was when I was graduating from high school, and I was getting an award and I was supposed to be on the stage. And when my father went to pull me up the steps, the principal came over and said no, he didn't want me on the stage, I could sit in the front row and they would come and give me the award. And for me, that was like, "I'm leaving." But my father was, "No you're not." And he had a discussion with the principal and they let me on the stage, but I had to sit in the back of the stage.

Kimberly: Uh.

JH: So, I think that after that when I went to college, I started really to come out a little bit from my shell and I really... When working with other disabled people, maybe I'm a little feistier than some people, and I'll speak up a little bit more. I mean I was in Brooklyn and everybody was a little feisty, but... So we all played our role. But I really began to realize, I guess the big aha moment for me was when I was denied my teaching license. And I really had to... 'Cause I couldn't walk, and that was explicitly what they had written. And so really it was at that time that I had to make a decision about whether I was just going to say, "Okay I didn't get my license," which I projected that I wasn't going to get 'cause there were no other people that I knew who were teachers who were using wheelchairs, or I was gonna have to do something. And so I guess the big turning point for me was that whole process.

Kimberly: Right.

JH: So it started when I was about 20, 21. I mean, I was definitely doing advocacy work before, but I think that's when I really recognized that I had to speak for myself in conjunction with other people who had disabilities working together.

Kimberly: Absolutely. I'm glad you actually spoke about how your father had a different idea for you and you had kind of a different perception. What advice would you give youth with disabilities now when they may be at different points with their parents?

JH: So first, I think it's important to give advice to the parents and I think it's important to start working with the parents as soon as their child has been identified as having a disability, because parents, in my view, sometimes get a bad rap. I believe it's really important. Not all parents, whether you have a disabled or non-disabled child, are equally good, but I think by and large most parents try to do the right thing. And having a child with a disability, there's certainly more out there for a parent to link up to other parents as compared to when I was growing up.

JH: But I think it's our responsibility as adults with disabilities to try to work with parent-training programs and other organizations that are working with parents to really speak to them about our experiences. And obviously my bias is that we're looking for opportunities for disabled people, children and youth, both to be in inclusive settings, but it's really important that they're able to also spend time with people of different types of disabilities because for me, being able to feel pride in who you are as a disabled person and being able to learn also from adults with disabilities, being able to share those experiences is really important.

JH: And I think we really need to help parents recognize that their child has a disability and hiding it. We're not talking about it from a negative perspective, we're talking about it from a positive perspective. The kids need to be able to be themselves, to be able to dream their dreams, to be given permission to have the dreams they wish, nothing is impossible today with the way the world is changing. But the mentality, the psyche of the children themselves and their brothers and sisters and their neighbors, I think that's all really important. So, work with the family, but really start working with the kids when they're younger...

Kimberly: Yeah.

JH: Not when they're teenagers. I mean, obviously, yes, when they're teenagers, but I think working with kids when they're younger, letting them ask the questions they wanna be asking, letting them get information. I think having peers or mentors who are older than they are, who they can call on the phone, go to events with, trust, who have a little more experience in life and can kind of usher people through, I think that's really important. 'Cause it can help really usher people into a future which they may not have dreamed about for themselves, or their parents directly or indirectly may have in protecting...

Kimberly: Yeah.

JH: Your child's right, and your kid to be heard again regardless of disability. So I think it's also important for parents to really be able to look at the future. And now I'm not just talking about the future of the child, but the evolution of what's going on in our societies, in technology.

Kimberly: Oh, yeah.

JH: And making sure that their kids are being taught appropriately in schools and learning what they need, coding and all types of things that I think too frequently disabled kids are not a part of.

Kimberly: Absolutely. We were just talking about this the other day just about how some of our PE programs are still exempt and what we need to do, because that's a basic... That's a health class essentially. And that's really important. Something that... We've watched you on a number of disability rights videos and giving testimony during the 504. I resonate with that, your statements during that time, and especially when you looked at the legislator and said, "Stop shaking your head," I understand.

JH: Actually, you know, he wasn't a legislator, he was... So there were two legislators there, but he was a staff person that was sent by the Department of Education...

Kimberly: Oh, interesting.

JH: To represent the department. And in some way, as I got older, I realized this guy was a poor sucker, [chuckle] 'cause I doubt that he even supported what they were doing. But nonetheless, he was out of his league.

Kimberly: Yeah, yeah, sure. But you know, I see that a lot. I see that with different disability organizations, state agencies, they have an idea of what people with disabilities go through, they think that they know, but they really don't and sometimes, a lot of times as you know, they speak on our behalf. Tell me what you think makes people with disabilities more powerful when we advocate versus when people without disabilities advocate for us?

JH: I think it's like any minority group. It's important to have allies work with us. But if the main spokespersons on women's issues are men, there's something wrong. But having women as the spokespersons and men supporting, I think that's important. We're looking at Latinos or African-Americans or Asians or whatever the group is. In the area of disability, I think the failure to have disabled people speaking on our own behalf really also continues this belief that we're not capable of articulating for ourselves.

Kimberly: Absolutely.

JH: And I think that's true for every other group too, but because the other groups really, it's been decades now, that they are by and large speaking on their own behalf, that in so many areas, we're coming late to the game. And so it's also important that disabled people, where necessary, are given the opportunities to learn how to write a speech, how to give a speech, how to feel confident, how to answer questions, how to deal in difficult situations of all ages and to help... I think, telling personal stories is very important. At the same time, I believe that telling personal stories can be very painful.

Kimberly: Yes.

JH: And so I frequently feel that when people tell their personal stories, they're not necessarily telling the deepest personal stories, which may not always be appropriate, it depends on the situation. But I do definitely feel like whether now we're talking about a child or an adult really learning about how to think about and talk about some of the more painful situations that have occurred in your life, things that you've done that have worked and how you felt empowered even... When I was living in New York, a number of years ago, I went to a restaurant with a group of disabled friends, and it was, we went to a, I think it was a Chinese restaurant, and there were like me and three or four other people. And the owner came over and said we couldn't stay. And then I said, "Well, call the police 'cause we're not leaving." And that was really empowering for me. You know, there are these moments where, "Where did that come from?" But of course he didn't call the police.

JH: But then there was another incident later on when I was in California, where we were trying to get a particular movie theater to remove seats because when we went to the movie theater, they told us we had to get out of our wheelchairs. And of course, we weren't gonna get out of our wheelchairs. If you wanna get out of your wheelchair, that's fine, but if you don't want to or you can't, you shouldn't have to. And so we orchestrated this whole event. We brought like, there were like three or four of us in wheelchairs, and then we brought a bunch of our friends. And we went to buy our tickets and they wouldn't let us buy the tickets. And then we demanded that they sell us the tickets. And we went to the lobby, and then we were going to our seats and they told us we had to transfer and we said, "No," and we said, "Call whoever," and we went inside and they called the fire department.

Kimberly: Oh my goodness. [laughter]

JH: They did. And so one of the people came over to talk with us and our friends started going, "Sh-sh-sh." You know, "You're interrupting the movie." We gave them our card and we all worked at CIL, and we said, "Call us, we'll set up a time to talk." They removed seats.

[laughter]

Kimberly: Yes.

[laughter]

JH: So but you know it's those types of stories where we planned it in advance, I think everyone that was involved it were pretty... It wasn't our first time around the block on things like this, but it was very important. And I think these types of situations where something is happening at the moment and you feel that it's wrong, or unjust, trying to deal with it as soon as possible.

Kimberly: Yes.

JH: Getting names of people, getting phone numbers of people, asking for supervisors, doing all these things that I think are critically important because then people start taking us more seriously. And knowing what you're rights are, I think that's really important that you know what your rights are and you know what they're not so that when you're asking for something, you feel reasonably confident that what you're asking for is not only just, but it's legally required.

Boris: So I wanna take it back to the signing of the 504. What were your expectations in getting that signed and did you feel like the fight was really over, once the ink dried?

JH: Well, what our expectations were... Well, historically, what happened was the law was passed in 1973, it was the Rehabilitation Act of 1973 was amended, which dealt with the typical Department of Rehabilitation Services, but also one very important part of that law was Title V. And in Title V... So, anybody watching this who is really into... It's not only history because it still exists today. Title V is where you have Section 501, which addresses the federal government and employment and 502 and 503 and 504. And 504 said that if an entity was getting money from the federal government, it couldn't discriminate against someone who had a disability. And as some people know, the law itself was like 42 words. And so, in order for that law, 504 to become a reality, it really was important that there be regulations developed that would answer a series of questions. What do you do? Are you gonna make every building that gets money from the federal government accessible over night? Who is someone with a disability? What is an accommodation? And so you can see that the 42 words statute then became a set of regulations that were many many pages.

JH: Now, those were developed because of leadership from the Department of Justice and people like John Wodatch who now is retired but is still actively involved in legal issues around disability in the US and around the world. And there were meetings that were held, where the Department of Justice employees, actually it was Health Education and Welfare at that time, where John and his team were learning about the different kinds of discrimination as well as what kinds of remedies could be expected. And so the draft regulations were weaker than we would have wanted but they were basically a set of regulations that many people felt were reasonable for the time and if they were implemented, would make a dramatic difference. And they did not get signed by the Nixon or Ford administrations. And so when Jimmy Carter ran for president, many of us supported him, and one of the reasons for the support was he said that they would sign the regulations in the form that they had been out for comment with the comments that had come back and then that wasn't happening.

JH: And so I think we... Our expectation was that the regulations be signed as they were and that we wanted no more compromises. So we knew very clearly that getting these regulations signed was only the beginning of a game or a third of the way into the game because then we were gonna have to be dealing with educating the disability community, educating all the leadership in the organizations, hospitals, schools, anything getting money through the federal government, state government, city government, on and on. We were gonna have to make sure that they understood what they were supposed to be doing. So it was really just the beginning. And here we are in 2019, and in 2018 I was giving a presentation up at Radcliffe in Harvard and a really nice Dean got up and talked about the ADA and how their obligations began under the ADA in 1990, and I got up and I spoke and I said, "Actually, these obligations came about in 1973." Now, I think this also speaks to, and I had an interesting discussion with a young disabled woman in the last couple of days who is attending a university where there are many universities in the United States, progress that's been made, but more that needs to be done.

JH: And she was telling me that one of the board of governors at this school, it was brought to her attention that there were issues on the college campus, and she said, well basically they didn't need to do anything until a complaint was filed, and I said to this young woman, "So has anybody filed a complaint?" And she said, and I completely understand what she said, "It's difficult for students to file a complaint because they're afraid of what's gonna happen while they're at school or what could follow them." Now I think what's important is that these students not feel alone but I understand what they're saying, but complaints against the university do not have to be filed by a student. They can be filed by anybody in the community. And so I think that's something we also need to be looking at is how can, for example, the Centres for Independent Living and other organizations that are working in local communities, work with students to really help advance remedies that may or may not have to come about as the result of the complaint, but I think there's a lot more to do.

JH: But I think Boris, the long answer to your short question, here we are 1973 to 2019 and as far as 504 is concerned, still a lot more work to be done. And again, I think when you look at the LGBT movement and the women's movement and others, they're much stronger than we are and so that's really an area that we have to be really continuing to work on is really becoming a stronger movement that is more diverse and where we can bring other movements that have not focused on disability into our movement to see the term intersectionality and how bringing all of us together is important, and that cases of disabilities that we are playing a pivotal role.

Boris: And on that subject of these other movements and that intersectionality, I think we're all very familiar with the power of the sit-ins of the 504. And I know I've watched that drunk history segment several times, but what gets lost in that narrative sometimes is the role that other civil rights organizations and other groups had. Can you talk a little bit about what kind of assistance and what kind of role other movements played during those sit-ins?

JH: Yes, it's a great question. So one of the reason why the 504 demonstrations were so successful, was that at that point in time, in the disability community, we were already working with other movements. So we were working with the labor movement, we were working with the progressive religious community, Cesar Chavez and the Farm Workers, and the Black Panthers and Glide Memorial Church and which was a very progressive church in the Bay Area. People knew us. And I think what was important is people trusted us. We had really been working on developing alliances where we as the disability community would support other groups when things were happening, they would support us. And we had already started in Berkeley at the CIL in Berkeley and I think at a San Francisco CIL and others. Working with other groups around city budgeting and county government budgeting where we collaborated together. So we weren't allowing government to kind of pick us off. And so we had relationships developed there, and also we had been working with Legal Aid on issues around accessible buses and transportation and various issues. So the people from the disability community were respected as knowledgeable people who cared about diversity and, like other groups, were really advocating for change.

JH: So I think that was really very helpful. So we really didn't have pushback from people in our communities during the demonstrations, and we had people who were supporting. If you go back and look at some of the historical documents, there were city councils around the state that were passing resolutions in support of the 504 demonstrations. And the governors, out of the Governor's cabinet, Ed Roberts was the director of the Department of Rehabilitation. And so he was talking to other heads of departments and one of the departments sent mattresses down and blankets down so that people didn't have to sleep on the floor. And in the film called "The Power of 504", which is... It's 18 minutes and you can see it on YouTube, and you'll see that the mayor at that time, Mayor Moscone, was trying to get showers put in to the bathroom, so that people who were staying there could get showers. And of course he wasn't successful on that but they were trying, at many different levels. And we had food that came in because different organizations, brought in food.

JH: We had medical people there because there were a lot of people and someone could get sick or something could happen. And it was... I think what was really very important about those days was that it was cross-disability. And I think that was a unique time for deaf people and blind people and physically disabled people, and we had some parents who had disabled kids, in the building to really, what I like to discuss as breaking bread together. So it was really, I think, very, a very important time.

Kimberly: So this year... This month we're actually gonna be celebrating the 29th anniversary, we're getting up there, of the Americans with Disabilities Act. And I know that we have so, such a long road ahead of us. But what do you think is the most significant impact the ADA has made so far? And what do you think is next?

JH: I think that the ADA has had a very profound effect on certain areas. So the build environment, transportation, I think those areas we can definitely argue have been dramatically changed. In as much as between 1990 and today, all buses are accessible and if they're not, they're big time exception to the rule and complaints being brought against whatever the entity is. And I think we are seeing, going beyond accessibility, we are seeing more disabled people getting jobs. I had a very interesting conversation last night with a friend of mine who works for a bank in California, a big bank. And she has a disability herself and she was... And she's one of the vice presidents, they have lots of vice presidents, but it's still a senior position, and she's one of them. And that's really enabled her, amongst other things, to be able to be bringing other disabled people into the workforce. So she's not on interviewing committees or hiring them but she's getting people in positions to do recruitment, to recruit disabled people, and she deals... At least 50 people, since she's been there for the last couple of years, have been brought in and the numbers of people identifying as having a disability have gone up from below 1% to a little above 3%.

JH: And she was telling me about another colleague who has a disability, he works for another big bank out of New York where they're having similar success. So I think the important part of that story is when minorities, women, others come into government or business or set up their own businesses, we typically see that people bring in people from the communities that they represent and that diversity also expands. So the absence of disabled people or the absence of people who have disabilities but don't identify is an issue, the more disabled people that we can get into positions of leadership the more we can get people who have invisible disabilities to be able to speak up and to acknowledge that they have a disability, I think really a lot of what we've been discussing, relates to... We talk about 56 million people with various forms of disability. The Gay Pride Day Parade in New York had four million people. Two years ago I was the Grand Marshal at the disability pride parade in New York and there were about 2000 people.

Kimberly: Man.

JH: So I think we need to really continue the work that we're doing and allow people to feel that we should be proud of who we are and what we contribute.

Kimberly: Absolutely, absolutely.

Boris: So where do you feel like that opposition to the disability rights advocacy and all the things that we're talking about, what do you think the root cause of that opposition to that advocacy comes from?

JH: People don't necessarily wanna change, by that I mean the person or the entity that we are saying needs to change, they don't wanna change in general. In some cases, tell me what to do I'm happy to do it, in some cases, it's why and how do I do it, so I think there are a variety of reasons. But again at the end of the day it's... We need to be dividing our voices, we need to be able to really talk about the changes that have been made as well as the changes that continue to need to be made. I think when we look at issues like personal assistance services and employment and separating the two, but employment is clearly a critical issue, there are many people out there who are qualified to work and are not getting jobs for any one of a variety of reasons.

JH: There are in-roads that are being made as we've just been discussing but we need to really continue I think... We talk a lot about the numbers of people unemployed which I think is important but I actually think it's really important to talk about the people who are employed, who have different types of disabilities, who are making contributions, who can be interviewed and be the voice to say, "This is how I got my job, these are the forms of discrimination that I experienced in the beginning, this is what I was able to do," or, "I experienced no discrimination. I was just looked at for my qualification. I got the accommodations that I needed," or any one of a number of issues. But I think talking about both the problem and the solution and things that are happening and really getting people into senior positions.

Boris: Yup.

JH: And I think holding, whatever the entity is, accountable and for me that means meetings with leadership from within the organizations and from outside of the organizations. Talking about a university, universities are not just there to address the issues of people on campus, universities are there also to serve the community. So things like accessibility, admissions policies, drop-out rates and disability studies, all these things are important issues. Many universities around the country for the last number of years have working groups which are addressing issues around diversity. If you go on to many of these college campuses and ask them for their report and ask how disability was included, in some cases you will be pleasantly surprised but in many cases you will not be surprised because there's very little, if anything, there. And that's where I think students and others need the support of the community to say that you're invested in a state school, it's your tax money that's paying in part for the state school, and you wanna be able to to hold them accountable.

37:58 Boris: Absolutely.

38:00 Kimberly: And diversity is a hot topic and we talk about that a lot around here. There's a lot of diversity initiatives from other organizations and then when we ask about disability they're like, "Oh, I haven't thought about that," well, yeah, we're part of that discussion. But it's just so funny how everybody has different perceptions of what is included but it is our voice that changes that when we're there.

38:27 JH: And I think that means that we also have to have people who can get engaged. As we're getting more organizations to recognize that disability is absent from what they're doing in the area of diversity or even if it's an organization that is made up of a particular diverse population, getting those different groups to really have opportunities for discussions about, "Maybe you already are including disabled people and you don't know it." And I think I, speaking for a minute about being Jewish, because there's been a push in the Jewish community as a result of an organization called The Ruderman Foundation in Boston to really... And it didn't just come from the foundation, 'cause it's really something that a number of the synagogues around the country have been dealing with since the '80s, but I think it's been more in earnest since like 2010 as have a number of Christian organizations and I think in some of the Muslim communities also.

39:52 JH: But having discussions, which are not always easy discussions about what it feels like to be in a religious community where you are not seen as an equal. I gave a summer talk one year and said... And I gave a story about, "Okay, your daughter or son tells you they're in love and they're bringing someone home to introduce to you and they have a disability, what do you do?" And, you know, that typically wouldn't be well how do they get along and what are they looking for in work and blah, blah, blah. It's really looking at the disabled person in a negative way.

40:34 Kimberly: Right, right.

40:35 JH: Why is that there and what do we need to do to change that? So yeah, I think as we're looking at coming upon in 2020, the 30th anniversary of the ADA, I suggest things like go to your public television stations, your NPR, now, and find out what could you all be working with them on so that they can be highlighting what's going on in the communities, so they could start doing some programming now. And thinking about your local NPR, and your local PBS it might be interesting to see if you could get something focusing on what role did South Carolinians play in the passage of the ADA?

41:28 Kimberly: Yeah, that would be awesome.

JH: But you kinda need to speak... Start speaking to them, yesterday.

Kimberly: Yeah, yeah, I know... [chuckle]

JH: I think as we've been discussing, looking at the historical role that every state played in this, I think could be very important than maybe on the evening news or whatever some of the local events are and even if they show films over a month, like I hear they show films on Saturdays, they're usually national films. But I just think, yeah, there's kind of interesting possibilities of what local stations could do that really could talk about what role has the ADA played in their lives as well as what more needs to happen? I really appreciate doing this.

Kimberly: Yeah, we really appreciate having you and just a final advice that you would give to the disabled community. What advice would you give them to begin being part of the movement and making change?

JH: People need to feel welcomed. They need to feel that they're joining something which will be of benefit to them, and that they can contribute to and everyone's got a certain amount of time that they can give. And I think ultimately it's really on a one-to-one basis and a group basis, having people with different types of disabilities being involved in reaching out and really talking about issues that make a difference for people. And I think of people with psychosocial disabilities, and learning disabilities, and epilepsy and diabetes, really allowing people to understand the breadth. And it's a lot of work but you may wanna look at having some kind of a parade next year which would bring not just disabled people together, but bring this coalition of groups together to celebrate the 30th anniversary of the ADA and it could be an opportunity to get these other organizations involved in committing to helping put it together to bring people to the parade, and including people or speakers to really embellish not only the good work that's been done, but what more needs to happen.

Kimberly: Absolutely, we do something similar with over 30 different organizations, we host our advocacy day at the state house and it's a beautiful demonstration because that does show how we are stronger together with a cross disability representation as well, that we can make change that way. And so when we come together, it's really magical 'cause there's also disability hierarchy within our own community that we've got to... We've got to change. Our barriers are no different from individuals with intellectual disabilities. We still face employment and transportation. I think that's been the same barriers for years and years and years, so but that's a great idea, we can easily create something off of that event as well during that time.

JH: And I think being involved in... Well, ensuring that the community is represented by the diversity.

Kimberly: Yeah.

JH: Racially, linguistically, dealing with issues around migrants because South Carolina definitely has immig... Well, we're all immigrants.

Kimberly: Right.

JH: I love asking people, "Where is your family from?" And they'll say, "Michigan." Like, "No. Where is your family from?" And people frequently do not know where their family is from. I'm first generation, so I know that 100% of my family is from Germany and why we left because my parents left because of the Holocaust. And people need to know their origins, they need to, in my view, really dig into why did your parents come here, or your grandparents, or your great-grandparents, what were they leaving? What were their experiences? And to be more respectful of people who are coming from other countries who in many cases they're fleeing persecution and remembering that everyone's story may be different, but this country, it was natives that lived here and we came and did all kinds of things in taking over the land. But I think our history, disability history, and all histories are really important for people to understand.

Boris: Yeah.

Kimberly: Mm-hmm.

JH: Yeah.

Kimberly: Yeah, yeah.

JH: Well, it's very nice to see you Boris and very nice to speak with you again Kimberly.

Kimberly: Yeah, and thank you so much.

JH: Thank you for your audience, it's been great.

Boris: Thank you.

Kimberly: Thank you. Thank you.

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On this episode, Julia Hartman and Asha Jones discuss the way young adults in Generation Z approach disability advocacy and what they've learned from the advocates that came before them.

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Transcript

Julia Hartman: My name is Julia Hartman.

Asha Jones: My name is Asha Jones.

Together: And you are parked in the access aisle!

Julia: So what I do, and what Asha does, is that we are EQUIP leaders, with Able South Carolina. And what that means is that we help run Able’s Youth Leadership Program, “EQUIP” for youth with disabilities, between the ages of 13 and 28, and teach them about how to speak up for themselves, different ways to advocate and their legal rights under disability rights law.

A: We also do a lot of public education doing different presentations both to youth and those who work with youth, and we try to educate on disability rights and self-advocacy and multiple topics relating to youth and disability.

J: Yeah, we do things like: do school visits at high schools and elementary schools, events for the general public, like any sort of conference, or things like that or any sort of presentation that you could see in a public place. We were thinking a lot about how disability advocacy has changed over the past. 30 to 40 years and it's changed a lot. We don't necessarily do a lot of the same things that people in the past would have done. A lot of what we do with EQUIP is educating people, helping them learn how to speak up for themselves, how to advocate which is speaking up for themselves and just what they need to know about different laws that help people with disabilities in their community.

A: And speaking about those laws, coming up here in July is going to be the 29th anniversary of the ADA which is the Americans with Disability Act, and that's kind of like, as Julia to explain it, the Bill of Rights where people with disabilities. And so we're kind of here to talk today about how advocacy has changed since the ADA’s passing. Now me, I was born about seven years after the ADA. I don't know about... You don't have to give you what your age, of course, but you were primarily here during the post-ADA,

J: I’m 23, so…

A: Yeah, okay,

J: So a lot of the ways that we advocate has changed, it's not necessarily doing a lot of big things like big protest a lot of time, although that does happen in present day for some laws or some things that people want passed, whether it be something that happens in someone's town or something on the national level, a lot of the time it can be just encouraging people to write letters to the representatives or even just lending people know, “Hey, these are the laws. So that help you do the things that you want, whether it's to get the things you need in school. Are you be able to go into a store?” These are those laws just having people be aware of them.

A: Yes, because, while our forebears definitely have put in the work to get these laws, to be there, we can't necessarily benefit from them unless we enforce them and make others enforce them, and so we need to be aware of what our rights are under these, under these laws and know how to go about them and how to go about advocating for ourselves and others so that we can experience the equity these laws are trying to create that have been put in place by those who came before us.

J: It's like a garden. The people that originally advocated for those laws planted all the plants in the garden, but we're the ones in charge of watering the garden. Now, and making sure the plants are still alive

A: And chasing out any dear who try to eat them.

J: One big thing that we have today, one tool that we have in our advocacy tool box that not necessarily the previous advocates have all the ones that are still alive still will have these tools at their disposal is the internet. I actually found out about Able South Carolina through Googling disability rights organizations in my area and I wouldn't have found out about it if it wasn't for Google. My mom said that when I was first born she had a really hard time finding disability resources when I was born. The internet wasn't exactly, brand new because it was 1996, but still it was hard for her to find resources. But after a quick Google search one day, I found out about Able what they did volunteer for a year, and then I got hired on as an EQUIP leader.

A: Google didn't exist in 1996 so…

J: There were other search engines.

A: Yeah, there were, there were, but I was just like, you know, it would have been harder. So, yeah, I definitely agree about the internet. It's a very useful tool and social media is a very, very important tool that a lot of disability advocates use to kind of get the message out there. One, it's accessible to a wide variety of people who have disabilities for example, if they're not necessarily out, be able to be out there in the streets, they can get their message from their homes out into the world and have a wide audience that listens to them.

We even have things like Memes that we could use to kind of spread that message which is just that, an image, maybe a little bit of text and those can go viral, pretty quickly. And within that small image-text combination, you have a lot of people that heard your message.

J: They’re like inside jokes of the internet. Like political cartoons, sort of.

A: One of my favorite tools to use for disability advocacy is, well it used to be Facebook, now it's more Twitter simply because I have a wider audience and you get to interact with, again, other people who have disabilities and those who are one of the biggest people I didn't interact with are parents, parents who have children with disabilities, who are interacting with adults, so the same disabilities their children have to kind get that viewpoint and maybe even advice on what their children could possibly be going through and getting it from that kind of first-hand perspective rather than that of a outside perspective which can sometimes lead to some like patronizing attitudes and behaviors.

J: Or them getting the wrong information or information that they don't necessarily need.

A: Yes, yes, I definitely agree with that.

J: Some ways that I like to be a good advocate is just educating people around me about disability issues that affect the disability community. Often what I do is post videos or other articles, Facebook and explain my personal experiences of how I relate to those articles 'cause a lot of the time, especially with older siblings or older relatives, they might not necessarily quite understand. So putting it on a platform that they often use and break it down into a friendly way so I can meet them one-on-one at their level helps just having conversations every day, with anyone really.

A: Yeah, I definitely think that conversation every day is kind of important. I just kind of integrate it into your everyday life. Disability is one of those topics that I've always loved to talk about with people. I also think that, elevating the voices of people around me who have disabilities is always really important especially do it with, well, people who have different disabilities than I, or even some of the same because we all have different experiences and I think one of the most important things that people without disabilities can do for the disability community is to elevate our voices by sharing the things that we have decided to share or put out there.

J: It's also really important that I've learned from my personal experiences. Put it in a friendly way, in a friendly calmly. For example, I talking to my brother a few weeks ago and he was saying one of the companies he is now training to work for provide money, so that schools can provide Limos for “students with special needs” going to prom. And I calmly told him, "Hey I wasn't sure if you knew this but actually a lot of people with disabilities consider “special needs” kind of an insult and kind of condescending because that term comes from a time where people with disabilities were considered something you don't talk about and were sent off to places to live, not necessarily in the public eye. So things like... What's the word, “institutions!” things like that. So that's the origin of that word. And people are gradually trying to phase that out. So, please don't use that.

And he said, “Okay, I won't use that anymore.”

A: Yeah, sometimes it's just as simple as having that conversation, 'cause people sometimes honestly just don't know, or maybe they have some misinformation. And so I definitely think there's an advantage to having open conversations and acknowledging that not everybody knows the same thing or has been exposed to the same thing, and even when it's a more difficult situation I think that a lot of times it's still important for those conversations to be had.

J: And also keeping yourself aware if you're not familiar with certain issues like I often come to Asha for questions about disabilities that I necessarily don't have but she has like autism, for example. I will ask her questions about how I should approach issues related to autism or just wanting to learn more? And she has often asked me questions about cerebral palsy as well, so we learn from each other. One of the things that I got involved with when I first figured out about Able, and what they do, after I started volunteering here, was a social media campaign called HireMeSC. It's a social media campaign run by the South Carolina Disability Employment Coalition. And what people can do is post selfies of themselves with the hashtag HireMeSC on any website, like Facebook, Instagram, and Twitter and talk about their employment experiences, what they want employers to know about employing people with disabilities, their experiences with employment, employment discrimination, their dreams about their careers or dream jobs with that hashtag.

I've done it a couple of times, Asha has done it. We even have billboards across the state with our faces and the ire HireMeSC logo.

A: I actually got contacted by one of my cousins who almost swerved off the road 'cause they saw my face on one of those billboards.

But it shows that the message is getting out there all across South Carolina. And I really think that it's helping breaking down some of those misconceptions that people with disabilities aren't necessarily looking for work or that's not something necessarily attainable for them because it is, and we know that one of the best options for people, the option we should be looking for people with disabilities, just like everyone else is to be able to have gainful employment when they come to that age.

And I really think that HireMeSC is doing a great job of getting that message out there. There's even a website.

J: It is HireMeSC.org.

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Not that kind of porn! INSPIRATION porn. This segment responds to the response to Kodi Lee's success on America's Got Talent.

Disclaimer

Transcript

Boris: If you’re listening to this in the office, it’s time to turn it up because we’re talking about porn. Inspiration porn, specifically. That’s portrayals of people with disabilities as inspirational or exceptional based solely on having a disability. Inspiration porn reinforces harmful concepts and perspectives that keep people with disabilities sidelined and excluded, often from their own stories. To help break down the influence of inspiration porn, we here at the Access Aisle present to you – the Porn Clip of the Month.

Clip:

Kodi: “I’m Kodi – I’m Kodi Lee!”

Reporter: It’s a moment that just makes you feel good.

Kodi’s Mom: “He’s blind and autistic”

Reporter: 22 year old Kodi Lee, shocking the nation with his singing on America’s Got Talent.

Doctor: There’s always hope as far as hidden strengths

B: Before I get into this I wanna be forthcoming about few things: one, I don’t watch America’s Got Talent. I’m not sure that I agree with its premise. And two, there’s a pretty big chance people are not gonna like my hot take on Kodi Lee. For those listeners I also offer takes in mild and lemon pepper variety. But back to Kodi Lee or really, the response to Kodi Lee. This young man with Autism and a visual disability caused a giant wave of dialogue about how we in America talk about disability thanks to his participation in the America’s Got Talent competition where he used his musical and vocal talents to get Gabrielle Union to use her Golden Buzzer. I don’t care at all about the second half of that last sentence but I care a great deal about how people like the doctor in the clip we just played talk about the talents of people with disabilities. Kodi Lee is not talented in spite of his disability. Kodi Lee is not talented because of his disability. Kodi Lee is talented AND he has a disability. He can be both. We don’t have to cheapen the hard work and talent it takes to develop that kind of skill by bringing it down with that tired trope of “look what the disabled kid can do!” He can do a lot Becky. And if you take your head out of the sand of what he can’t do, you’d get to notice the whole world of things he can. Becky.

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This month, join Boris, Emily, and Dori as we talk about the similarities and differences between emotional support and service animals as well as the confusion surrounding the laws about the two.

Disclaimer

Transcript

Boris: It's been 10,539 days since the Americans with Disability Act has passed and you are parked in the Access Aisle.

B: Good morning, and welcome to the as my first name is Boris and my last name is hard to say, this month we're gonna be talking about service animals, but before we get to the interview, I'd like to set the scene a little bit, with a quick history lesson. The month was June and the year was 1928, the world was in recovery from the end of the First World War, and still 90 years away from the release of Drake’s fifth studio album. Nashville born, Morris Frank, and his dog Buddy stood on West Street in New York City surrounded by wide-eyed reporters with all eyes fixed on them, they watched in awe as Morris and Buddy stepped into the roadway and made it all the way across the street with not a single misstep: setting the news world on fire with the story of the 20-year-old blind man from Tennessee who regained his independence with the service of a dog. Morris and Buddy would go on to be the founders of the first, and now oldest, guide dog school in the United States: “The Seeing Eye.” Now with that out of the way, let's introduce our guests today.

Emily: Hi there, my name's Emily Beasley, I am the Youth Leadership Coordinator here at Able, South Carolina, and my dog's name is Tucker.

Dori: Good morning. My name is Dori Tempio and I am the Director of Community Outreach & Consumer Rights for Able South Carolina. And my service dog is Shack.

B: Okay, Emily how did you decide or come to the decision that you needed Tucker.

E: Yeah, so, Tucker is an emotional support animal, which means he's not a service animal, and the rights are a little bit different. But I needed more support at home than I did out in public, and so I decided to get Tucker when I... My depression got really bad and my anxiety got really bad. And so we looked around and went to a breeder who had several other dogs these as service animals and the ESAs and so we went with her and I picked him up.

D: I’ve had four service dogs total and the all four of my service dogs have come from accredited organizations, under Assistance Dogs International. And I spent a lot of time doing research from when I lived in Maryland, and then I moved to South Carolina.

It was essential to me that if I was going to get a service dog, I wanted to make sure it was a viable service dog from an organization that had experience working with service animals, and for me, I started to notice that doing the typical everyday things like getting dressed putting my coat on, trying to pick things up from the floor, trying to transfer from my wheelchair to other surfaces (like chairs, bathrooms, etcetera) and really thinking about where I was expending energy. I was expanding energy. It would take me two hours; I would go to work two hours early to take off my coat and that was not energy I needed to expand. If you know me, I'm a very active person, I like to be in the community, I like to work, I like to volunteer and in order to do that, I knew I needed something that would provide me assistance to do that but I wanted it to be in such a way that I wasn't having to be reliant on people but still in a way that demonstrated to others that all of us can use different accommodations to achieve the goals that we want to.

B: And, Emily, how is that similar or different to what you went through?

E: Yeah, so it's a little different. So with emotional support animals, they do not have to be professionally trained, they don't have the same public access as service animals. So, like I said, I can't take Tucker into public with me but um I did do a lot of research and I did get him trained partially before he started acting as my emotional support animal yeah.

B: Do you feel like it's kind of safe to say that people look at emotional support animals in a more negative light, than conventional “service animals?”

E: Oh yeah, I most definitely... I think it has to do with people faking their emotional support animals and using the law to get the pet fee waved or to fly with their animal, or things like that. Whereas, I know for me, if I were to try to fly with Tucker that would honestly probably be more stressful than helpful for me, so I would never even think about taking Tucker on a plane with me. The only part of the law really that I take use of is that he's allowed to live with me and I don't have to pay a pet fee, because he's not technically a pet, he is an emotional support animal.

B: And that's under the Fair Housing Act right?

E: Yes.

B: Okay, okay, well, Dori have you ever encountered somebody that that's tried to have a fake service animal or try to tell you that Jack isn’t doi-, isn’t a real service animal?

D: I have on several occasions, I can give a couple of examples. One, I was at our local home improvement store and I was shopping and all of a sudden, I was in the line paying for my goods and I hear barking and... the manager comes running out, and he's like, "Why is your dog barking?” And everyone else in the line said, “It isn't her dog, it's the lady with the dog in her purse.” And when the manager said to her, so your dog a service animal, she kind of chuckled and said, “Yes, he is,” and then she looked at me to see if I was going to review her answer. Which under-law cannot because technically, if they ask you that question and you decide to respond that way, that is your choice. The only other thing they could have done in that situation was to ask her, Would tasks the service animal performs for her.

And other situations, I've been on the other end of the spectrum where I was out trying to get access into locations in downtown Columbia, whether it was a federal agency, or a restaurant or local business, and I’ve had people say to me, "Well are you sure that's a service animal? Are you sure he's allowed in here? We serve food, we do such and such business. You can't bring him in here”.

And I think what people don't know, are all the dynamics of service animals and emotional support animals and when you don't understand all of that, that can produce a lot of confusion. Yeah, I don't think just confusion for the public. I think it produces a lot of confusion for individuals with disabilities who don't know which law fits which type of service animal in what situation. And so there are really generally a lot of times people don't know that they're misrepresenting their service animal. An example, some people refer to their service animals as therapy dogs because they feel they give them some therapeutic elements of emotional support or physical assistance, like they have physical therapy, and I’ve met with people, with legitimate service animals just refer to their animals as in the wrong way and they've been denied to access too and the laws are so intricate, now, but unless you really know your rights, it can be complex. And so I like to look at it from the perspective that hopefully with more education, we get better with that.

Hopefully, maybe down the line, we have some more guidelines for how to oversee service animals and emotional support animals but you could even go state-to-state and even with the ADA some states have different your regulations as well. So I can see, for the typical person that would be very confusing whether you're a professional, or a person utilizing these animals.

B: Something that we've seen start to happen a lot in the past couple of years is that more and more states are adding additional legislation to crack down on the concept of people faking service animals. What do you think of that as a pandemic? Do you think that there's too many people abusing service animals? Do you think that that the number of people that are faking is outweighing the number of people that actually have or need the support of one?

D:And see I have concern, why we have a federal piece of legislation and most of the time it isn't implemented. If it was implemented in the way it was intended, speaking of the Americans with Disabilities Act, we wouldn’t have some of these concerns, but people aren't implementing it and utilizing it correctly, those in enforcement jobs.

The second part of this is: legislation sounds great on paper. The difficulty with legislation is individuals are just that, people with different needs, people with different abilities, people with different ways of communicating.

And as I said earlier, sometimes people use the wrong wording to talk about their animal. Sometimes people, in stressful situations, can't communicate that it is indeed an animal and what it does for you-, a service animal or emotional support animal, and what it does for you. And the problem with that then becomes that you as the owner who may have a legitimate service or emotional support animal can’t explain what that dog does for you not because you don't want to but because the way your disability impacts you, and therefore, in some states you're being charged with a misdemeanor crime which entails money, it entails a misdemeanor crime being put attached to your name and you will take years and years and years and money to get that off your record.

B: So even, it's even more barriers on top of a person who had already was already experiencing barriers. Exactly, so... And they're already recognizing, in Georgia, Colorado and a couple of other states where it’s ended up hurting the individuals it was intended to help. So really thinking about that, thinking of all aspects before we just institute a law that may not actually benefit those that was intended to serve.

B: So I noticed, I wanna speak to the elephant in the room. And by that I mean dogs... So we're talking about about service animals, but both of the examples that we've got here are both dogs we really don't see service animals for physical or visual disabilities outside of dogs and mini horses, due to an interesting asterisk in that law, but on the emotional support animal spectrum you see a lot more diversity in that, which I think kind of lends to that public perception of maybe what is a chicken gonna do for you, that a dog doesn't do. Emily, do you have any thoughts on that?

E: When I was looking at emotional support animals and deciding which kind I should get, I really went with dog just because, you know, they’re Man's Best Friend and everyone loves dogs and that seemed like the best fit for me. But all animals can provide support. I do think that different animals may be taken less seriously but not because they're not providing that emotional support, but that people just don't understand how that support could be provided.

B: So it sounds like it's a lot of just public perception being being worked. What are some things that we can do to help educate the public or show the importance in the legitimacy of emotional support animals.

E: I think people being more open about them I think because of public perception of people with emotional support animals and people that think that we are faking it or just using it to fly for free have their animal fly for free or not have to pay housing fee. I think that people misunderstand, but if more people were open about their animals in general and how they do actually help them, then I think that other people might start to see that it doesn't just have to be dogs.

B: Have any specific skills or actions that he takes when you're feeling a particular anxiety or any kind of symptoms that he can pick up on.

E: Yeah, so, Tucker has, been trained in a couple of different ways. One way is that he alerts me to my anxiety either by coming over and nudging me or jumping up on my leg if I'm standing, and then because he's also, he's pretty small as all of 20 pounds. Then the other tasks that he's been trained to do is called pressure and so that's when he comes over and if I'm sitting he’ll lay on my lap. And, if I'm laying down, he’ll lay on my stomach or my chest and both of those, he knows how to do it on command but he'll also do it if he picks up on me becoming particularly anxious or if I'm crying or if I'm just super depressed. He's really good at picking up on those kind of things, and then of course he does just provide general emotional support in that. I'm really happy when I'm around him and he brings me a lot of joy.

B: So in a real sense, there are certain tasks that he's been trained to do that directly benefit your disability, right?

E: Yes, but that is also kind of unique to my situation, and emotional support animals don't have to be trained in specific tasks to help. I just decided that I did need help and the supports at home but I didn't need a full-blown service animal to take out with me in public, because generally I was around other people in public that could help me fulfill my needs, that I wouldn't otherwise be able to.

B: And, Dori, I'm seen some of the things that Jack's done for you and I know you mentioned earlier, some of the things that you felt like you needed to help with that Shack can give you some additional independence for... So, what are the ways that shack helps you that you feel like a person couldn't? In what ways does having a service animal beat out having a PCA?

D: I think being a person who wants to be as independent as possible... people have their merits in a lot of different areas. But to be honest, I think having a service animal, empowers you, it allows you not to be dependent on somebody who may or may not have other responsibilities that they have to take care of. Also being a person who uses a PCA as well, they're different dynamics to it. Having a PCA who had to pick up my cellphone the 10 times that I drop it usually during a day, having a PCA who had to help me transfer every second of the day when I want a transfer at home from my bed or from the wheelchair to the bathroom toilet to the wheelchair to a chair or sofa, my service dog can take notes back and forth or remote control of things for me and my husband.

There's a lot of essentialness that people forget. People think people are the answer. Not in all cases. Sometimes elements of people are more enabling than animals than empower you. I think it really is dependent on this person. I don't think a service animal or an emotional support animal is right for everybody.

I think you have to have certain dynamics and responsibilities, and I think the animal has to be wanting to be in that job. It isn't something you just take an animal and put it in because that's what you want. They have to have the desire to wanna work for you in either role whether it's a certain more emotional support animal, and that is not every animal, so you have to look at it from that aspect, as well. It is much less money too to have a service animal, then a PCA to have a PCA also in South Carolina and other states, you have to meet certain qualifications for Medicaid, Medicare, and other entities from which you receive these services. And so, I really think when you look at the global perspective, of why do you choose a service animal or an emotional support animal, it’s very individualized. What's gonna be right for one person is not gonna be right for the other, and whether I choose I want an individual to assist me or whether I choose I wanna service animal to assist me is also individual wants and needs based as well. I don't think one is any better than the other to say that to someone personally, that's for me, one is a better choice, but for somebody else, just like the independent living philosophy says, it's really the choice of you works best for you.

B: Well then, just for my own personal amusement and possibly the amusement of our listeners, tell me and be as detailed or as un-detailed as you like what it was like the moment you met Shack.

D: Oh, that's a big story. When I first met Shack, when you go through a service dog organization, and I can only speak from this reference, I got a check from Palmetto Animal-Assisted Life Services, which is also called PAALS, out of Columbia, South Catalina. They go through an extensive process where you meet with a lot of different dogs, over the course of a year, they are accepted and they look at the different dogs and how they interact with you. You get to have input. They also have a client committee that gives input. You are interviewed in your home, you are also evaluated by your medical doctor and they give input too, and then when you go through that, you weigh out the pros and cons. So you’re asked your opinion but they also have a training team that looks at that too. Well, the first time I met Shack, he ran up to me, he jumped on my foot rest on my wheelchair turned his body around. And he did a pose like we were on the catwalk. He just sat there and he wanted to go along. In it, did pose. We want the car, and I was rolling my wheelchair anybody to just sit there and go, I love. And it was very interesting because none of the other dogs at that time, really had any interest in being around a wheelchair and you could tell by their physical demeanor and they were a little hesitant. But he was like, "I’m down for this, let’s go! And for those who know me, know I have a lot of energy. Well, when people tell me he's the canine form of you, I guess that says it all!

B: And Emily, what was it like the moment you met Tucker?

E: The moment I met Tucker wasn’t as entertaining as the moment Dori met Shack, but when I took him home, we got him from a breeder out in Georgia and when I took him home, I felt at peace and I felt like I made the right decision. There was a lot of testing that went into picking the right dog, it was down between two puppies and just something about Tucker’s. demeanor just seemed perfect for me and I took him home, and he was still this little fuzz ball, and I set him in the grass and all he wanted to do was follow me around, and be right next to me and that really was… I mean… he has become my best friend and I knew that that day that he would be my best friend and that even if I don't wanna give him all of my attention because I'm feeling like particularly depressed or anxious, all he wants to do is make me happy and be right by me and I don't have to be giving him direct attention and he's still just chilling right by me and he has my back. So yeah, I'd say "peaceful” describes the moment I met him.

B: That's awesome. I struggle, to think of what more you can want from an animal.

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Not that kind of porn! INSPIRATION porn. This segment tackles the concept of special needs proms as a form of inspiration porn that hurts more than it helps.

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Intro/Boris: And now I wanna talk to you about inspiration porn, and no, I don’t mean adult videos with a heartfelt message about loving yourself – I mean portrayals of people with disabilities as inspirational or exceptional based solely on having a disability. People with disabilities face a number of barriers in our society and inspiration porn does little more than reinforce harmful concepts and perspectives that keep these barriers in place. People with disabilities don’t exist just to make you feel better about yourself – they just exist. Same as you. Same as me. To help dismantle the influence of inspiration porn, all of us at the Access Aisle present to you – our Porn Clip of the Month

News Clip Anchor #1: It’s prom season and high school students are swept up in the excitement of getting dressed up for the special dance, however, students with special needs can’t always attend but today, as Korina Flores shows us, they were able to enjoy a dance organized just for them.

News Clip Anchor #2: These students can enjoy a day of pampering and a prom, just like other high school students. During the special needs proms, students from 11 different school districts –

Boris: I’m gonna stop you right there Ms. News Lady – you’re right about one thing, people with disabilities are often excluded from community activities and this definitely includes school functions like proms. But special needs proms are NOT the solution. In this story, you’ve got eleven entire school districts that would rather keep students with disabilities completely segregated than put even the slightest effort into examining what it is about their own practices that keeps these students from attending proms at their own schools. How is this something we celebrate? If you can’t get into your house because the door is locked, does it make more sense to buy a completely new house down the block or just unlock the freaking door? Now I’ll admit that special needs proms are a very popular, Tim Tebow’s Night to Shine foundation organized hundreds of church based events world wide this year to give students with disabilities a prom. Except these proms didn’t even happen during prom season. They happened during one night in February. Because nothing says equal access like being completely excluded from not only the event but the entire event season.

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To discuss the ins and outs of the job seeking process for people with disabilities we have interviews about interviewing! Our guests include Cali Sandel, Able South Carolina's Employment Service Specialist, and Asha Jones, a college student with a disability looking to start her career.

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Intro/Boris: It's been 10,511 days since the American Disability Act was passed and you are parked in the Access Aisle.

Boris: Good morning everybody, and thanks for joining us, my name is Boris Klarić and you’re listening to the Access Aisle! Here with me today is Able South Carolina's Employment Services Specialist miss Cali Sandel. Good morning! So tell us a little bit about what it is that you do. What's your position where do you work?

Cali: So I work here at Able South Carolina, I am an employment services coordinator, which means that I partner with our consumers, I like to call them job seekers, I partner with job seekers and we work on the skills that will build up to their ultimate successful entering into an employment situation, advancing an employment situation, and then a little bit of job retention, to helping them keep jobs where things might be going a little rocky.

B: Okay, and what brought you to this position, what else have you done?

C: So this is employment services for the last eight years. That's all I have ever done. I used to work at a PR agency where I did some more work on the employer side of the house, but through networking and hopefully, being good at my job. Able South Carolina hired me, and so now I'm doing more of a consumer focused I only work with job seekers, I don't go and speak on people's behalf because people are capable of speaking for themselves oftentimes, and so we empower them to do that.

B: And this takes on a special connotation with you, because you're not just helping people with disabilities, you are a person with a disability.

C: Yes, yes there's some instant credit that happens here. I have been blind since birth. I'm not totally blind. Like anything else, blindness falls on the spectrum, but I don't see very well. I use a lot of technology and so often times I'll get somebody on the phone and they'll say, "Well I I can't work because I'm blind and I kind of check in and then have to have a little education moment, but yeah, I do have a disability, and I work most of the...

B: So let's start... Let's start with just a little bit about you. What has been your experience and trying to find and maintain employment as a person with a disability?

C: I went to a small university, and that's where my first job was. The IT department and the disabled student office had circled up around me in a really beautiful way, without me fully realizing how awesome they were until later, so when it came time for me to get my first job I applied like everybody else, I had networked within my department. The IT department got my assistant technology set up and I got to start just like anybody else would. And I was the person who would call you at dinner. “I am Cali and I'm calling from with the university on behalf of educational television. We're calling people denied to ask them some questions about the upcoming election. Do you have a few minutes?” Click and you do it again. So you develop a pretty thick skin and some de-escalation and some negotiating, and some persuasion telephone skills, still use in your job do that absolutely, it seems like a funny first job, but I learned a lot of valuable skills by doing cold political calls.

B: Kind of building on that experience, what do you hear from job seekers that are coming to you looking for their first job in a lot of cases? What do you hear, how does that story kind of mirror mimic your own?

C: I think everybody's story is different. I know that getting experience when a lot of positions require experience, where do you get experience if all the jobs require experience? We run into that a lot. I think for a lot of people, with people with disabilities myself included, a lot of people's first jobs are waiter or pizza delivery driver. And those are things that I was never going to be very good at or excel at. So the opportunity for this first jobs becomes a partnership of sorts, networking being connected to the right service providers. I think if your job is to use the office equipment, but that office equipment is above your head, for people who use wheelchairs that becomes a barrier. So I think having a, a community, a network, whether that be a natural network of people just that you know and our friends with that work of service providers as a... Sometimes we need a little bit of help and everybody needs help every now and again.

B: And so a lot of times, this help comes in the form of reasonable accommodation.

C: Yes, yes, that's a much better way of putting it, yes. I was very fortunate that the reasonable accommodations that I needed were in place and happened really quickly and naturally, but I knew what to ask for, I knew what I had used coming up through a school E-A and A... And a self-advocate, which is again something that I took for granted that I was able to do that I knew what I needed. Sometimes people just don't know what they need to be successful.

B: But yeah, not a combination, a really "portneuf a better word ignorance about what to request or the availability of reasonable accommodation. Is that something that's kind of common place that you found with a first time job, seekers with disabilities?

C: Yeah, assuming Ignorance is just a lack of education then yeah, people don't know what they don't know or their internal network. If you're the only person in your family and your school, and your community with the disability and you haven't gone and met other people are done research to see...”Oh, I can do this thing, if I do it this way.” Then you might have been told your whole life You can't do this thing, you can't use a computer, you can't use a copy machine, you can't do a laundry list of jobs. There's very few things I can't do. I'm never gonna be a school bus driver, I'm never going to be an air traffic controller. I probably wouldn't make a great firefighter for a variety of reasons, but there's a much longer list of things that I can do most of which were a reasonable accommodation, and I have to know what to ask for. I have to know that that thing exists.

B: Okay, and how big of a boost do you think that the presence of a reasonable accommodation makes and helping someone maintain and gain employment?

C: It'll make or break a situation just hands down. There's no question about it. I could not do my job without reasonable accommodations, I couldn't live independently without some alternative techniques at technology or even non-technology things. I'm sure there's a better word for that. Somewhere. Low-tech, there's high tech, and there's low tech, low tech is the box that I have my computer stay in sitting on. It was a 20 box on Amazon, but it allows me to not go home with a neck ache and allows me to be more productive. It's a box all the way up to the super expensive software that goes on my computer that reads and magnifies for me. There's a spectrum, but sometimes something as simple as a box 20 with of a box, can make or break a situation.

B: Have you experienced or encountered any kind of resistance to those requests for reasonable commendation from employers?

C: No, no, my early jobs were in a university setting, where I had a great network of professors who saw what I was capable of with the right tools, and then an internship where I had partnered with the Commission for the Blind and they were on the ball and delivered my technology so I didn't really have to make an ask, VR provided that for me. And then I went to work on for a VR agency where accommodations came naturally and now I'm here at Able. So I don't, but now so not a whole lot of resistance. Sometimes you get assistance from it. I've worked with some funny IT departments, where the third party guy, who doesn't work in the office who doesn't know me who hasn't seen what the technology does when it doesn't play nicely with their systems. I've gotten some resistance from it, but it's always been something we can navigate.

B: What's one piece of professional advice that you'd give to a first time job seeker with a disability who's trying to navigate the process from beginning to end, from hiring from trying to apply? What's one piece of advice that you would give to them?

C: Oh, that's a big one. I find myself repeating two things. It's a big question. I'm allowed to give you two answers. Yeah, okay, so the first one when you are on the job search people get jobs because they know other people. And I actually have made in turns repeat this repeat after me. People get jobs because they know other people. You can apply online and certainly, yes, that that is something worth doing but historically, networking is where it's at. Whether it be social networking... Or networking in person. People get jobs because they know other people. The other one is that competence with the P competence looks good on everybody and confidence with an F. looks good on everybody. And when you're interacting with potential employers and even once you're on the job you should always strive to be competent. The world's definition of competent not whatever bar has been set for you, but the bar that's been set for your peers and confidence looks good on everybody. If I'm comfortable with my disability, if I'm comfortable with my knowledge skills and abilities, I can show you better than I can tell you. Confidence looks good on everybody in a job interview and advancing and retaining employment. A lot of times it's being part of the team and being friendly. And do people believe that you're an asset? And did they like coming and asking you questions? So competence looks good on everybody and confidence looks good on everybody. People get jobs because they know other people.

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Asha: Hi, my name is Asha, I'm 22 years old, and I'm looking for an internship to start my career. The first real, real job I worked was a belt years ago at Subway and it was an interesting experience. The application process was interesting. I think, I over thought, a lot of it, they were asking me questions about how I interacted with people and was the life of the party and what I really wanted to say I was like, "Well I don't tend to go to parties, 'cause I get over simulated and I can't handle them”. Qualified to see if they would hire me. I have no idea. It seemed to me that I didn't think I'd be asking me so much of so many personal questions for a job where I didn't think it really mattered if I was the life at the party, but I did okay, I apparently I actually found some tips in an online support group for people to developmental disabilities, and I guess a lot of them felt they're kind to questions because maybe other people would know not to answer them a certain way and a lot of us would kind of... I don't wanna say fall for it at least the first time and... 'cause I got some fair warning. I was like, "Oh okay, I know how to answer this. I don't think it was on purpose, but it's still a... Something that I guess a lot of us would struggle with at the interview process was fine. They were group interviews, and I had too on how to the terming I guess, for lack of a better word, I did not disclose about my disabilities the, I guess, I was afraid too, I didn't want... This is before I was really taking pride and I so I... And I didn't feel like I needed any accommodations even though the only reason I kind of selected to work there is because I knew that there are a lot of times before I knew that the environment was okay and the lighting was low, and I wouldn't be able to handle it, if I were in a place with more lighting etcetera. I probably have to ask to do something like... Where sunglasses or something like that. And so, I had purposely picked a place that I was already somewhat I guess accommodating for my needs, I was glad that I had seen someone post about their careful employment before so that I had some idea of what to expect and that I wasn't caught completely off God. Or then the same mistake that the people who make the post made made the same mistake day that they spared me from making that mistake by sharing their experience.

B: So if you could give one piece of advice to somebody that was in your position and just looking for a job for the first time, what would you tell them?

Asha: I would definitely say to definitely look for those resources where people have gone through it themselves, and then listen to them. Your advice and kind of incorporate that into your job search if they had success with what they're doing and it vibes with you, then I would definitely say I do some research, seek out people who've done it before Go for it, but go for it, with confidence.

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A discussion about transportation options for people with disabilities in South Carolina featuring guests Justin Williams, a Columbia native with a visual disability, and Corrine Reed with the South Carolina Livable Communities Alliance.

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Intro/Boris: It's been 10,511 days since the Americans with Disabilities Act was passed and you are parked in the Access Aisle.

Boris: Welcome to the Access Aisle! Today, I've got two guests with me to talk about some of the transportation-related issues facing South Carolinians with disabilities. Joining me on my good friends, Corrine Reed from the South Carolina Livable Communities Alliance and Justin Williams, a Columbia resident with a visual disability and expertise in navigating the ins and outs of accessible transportation. So let's just dive right in, just can you tell us a little bit about how your disability affects you getting around in Colombia?

Justin: I have a visual disability, so my disability impacts my transportation and getting around in that I cannot drive a car, unlike anyone else can who can see. So I have to depend on other modes and means of transportation in order to go from point A to point B. Anything from walking to catch an Uber to? I've been on the bus, I've taken paratransit and still do use DART from time to time. I lived cabs and I have gotten rides from people.

B: You mentioned Paratransit can you tell us a little bit about what her transit is for those that may not know?

J: So basically what happens is they come and pick you up, you get on, you pay and someone drives you to your stop, and it's a shared ride, so you don't know exactly when you're gonna get there. So if I might get picked up at 11 in the morning and I might not get some place till 12:30 or 12, o'clock, or I might get there very quickly, they might drive me straight there and I might get there at 11:10 or 11:15 or whatever, so you can go straight there, but you don't really know. So if your stop is normally say 10 minutes away, you might go straight there or it might take you 30 to 40 minutes to get there - you don't know. It's a shared system, so you really can't plan anything. So if I were to go home in the evenings, with DART I can't plan anything really until I get there. I’ve had people ask “when you gonna get home”. Well, I'm not sure. Well, can you estimate not really, not so that it matters. I could sort of estimate, but just be okay with me being extremely wrong.

B: Okay, so what is your preferred method of getting around?

J: Mostly Uber. Uber or Lyft. Because it's almost, it's not like having your own car, but almost. There's a little bit of limitation to it, but you can use your trusty iPhone and get an Uber ride at just, you can get an Uber ride within five minutes, usually. And then go on to, to, to your location. It's all on the phone. It is 48% or so less than a cab, so it for example, let's just say, a 17 over in a 17 Cabernet, it's about a 9, override 20 car as a bride between the 20 car is an Uber ride between 11 and 12 is just roughly. So it's about 40% maybe more than that, cheaper except when it searches that's different, but other than that, brand list, it's a lot quicker now, you're gonna ask, in trouble, if you're gonna really... If you gotta be grocery shopping. There's the thing about Uber in life if you don't know whose car you’re getting into. So they're usually fairly clean and use got most us pretty neat or whatever, but you really don't know. Sometimes, I got stuff in the front seat you do. If you were to have eight or nine bags of groceries for me, that wouldn't be ideal because you wouldn't wanna be leaving if you accidentally leave anything in the car. It's 15. does for them to come back and you don't know if you have in a room to put all that stuff in there, so you... So it would be a little bit less than ideal. I would try it though, if I could, that would be the only thing that I can think of that's sort of A minus or if you have a lot of stuff to carry, but even then, I would still try it if I had a grocery shop and I ordered it on mine, I still go pick it up. an Uber. And just sort of hope for the best that would just be something you might run into. But outside of that, who were lift is great. That is... That really helped me out a lot because it gives me the all those against an independence.

B: Okay, so Corrine, can you tell us a little bit about what's unique about South Carolina's transportation infrastructure?

Corrine: So, South Carolina is transportation set up, so we are the fourth largest state owner of roads in the country about 70% of a road or state-owned, if you counted based on lane miles.

So for example, a five-lane road that's a mile that counts is more lane miles than a two-lane road, if that makes sense. And so because of that, a lot of infrastructure changes have to go all the way up through those bureaucratic ranks to all the way up to S dot even if it's like a neighborhood Road or something like that, which leads to a lot of issues where things aren't really being maintained as quickly as the locals with love.

So as far as getting a side well and lights and... Or bike lanes crosswalks those things can be especially challenging for people, for people to make happen in their communities. Another issue that we have is that... So we have a one-year repaving list in South Carolina and what that means is from the time the Department of Transportation, so D.O.T. decides it's time for this road to get repaved. Cities and municipalities often only have a year or less to collect public input to decide what they're going to do before it's time for a ball to go on the ground to put that in perspective. Georgia, North Carolina, both have a three-year repaving list, so they have much more time to collect information about who is using this road, how are they using it, are they driving are they walking are they biking are they using sidewalks. And so, that's another barrier that we experience. What we are also seeing is that often times people just don't have sidewalks or other, just basic accommodations in their communities, and as a result of how our infrastructure is set up, we are number one in traffic fatalities in the country and about 15% of those are bicycles and pedestrians.

That what we're wanting to do is really with the SC Livable Communities, Alliance, we're wanting to change that through what we're calling a Complete Streets policy, so the streets will be complete if they don't just accommodate those who can drive but also everyone else who's using the road too.

B: Okay so, so piggy backing off of that, Justin, what has your experience been as a pedestrian, trying to navigate South Carolina's roads?

J: Well, for me, I just, I, I use... I've walked all over downtown. So it's down to a one down to a column. Yes, sometimes streets break up, sometimes they beat sometimes there's no sidewalk in some areas of the city. Even some of the areas that I've been... I'm trying to think of some of the street Center.

Sometimes the sidewalks blend into the curve so you're like, "Is that a side walk or not? So it's kind of like, well, the sidewalk doesn't really begin at the corner, so you end up either walking on the grass and doing trees or... What I do is step out into the traffic and walk alongside the cars until sometimes I'm in the middle of the kinda get a straight away, then that you go back on to the side wall.

Sometimes I see that that can happen in a tenanted I don't know how the driving itself, has been affected. I know the roads, I feel the roads pretty bumpy when I'm riding, but I don't know, I'm trying to think if I've had any interactions that a lot of it is the infrastructure of the son walks and the streets aren't aren't always like it should be. You wanna make sure you also have something to tell you, when you're gonna walk into the street the... And you used your...

B: Can you talk a little bit about your wife?

J: That cane is something that lets people see that you have a visual disability. I use mine pretty much to go everywhere and I'm feeling for sidewalks, I'm feeling for its co. They call it the bump and adjust method. That's one of the jokes that you hear, but you're feeling for... Sidewalks you're feeling for changes, is that grass you're looking for light poles or trees. You're looking for just the different changes of the sidewalk, so when you're going out into the street... So times a driven a street to feel the same, so you just sort of have to be able to do it. Is that a driveway or a street? I know I've had a couple of times, right, not doing a block. Sometimes you don't know that there's wing a side street in the driveway, so you just go across that open path in if you don't hear any cars going, you just keep moving and then Hey, I was either a strut I've had that happen. It's either a trip leader of street usually I can tell, but every now and again you can't 'cause... And then you get to the corner, you're looking for that curve-cut or the way the side, what kind of turns into the grass for the corners, which you're looking for.

C: And then another thing that I wanted to bring up... So I don't personally have a physical disability, vision or mobility or anything like that, but one thing that I do notice rather frequently, especially in the downtown Columbia shopping district, near where I work, there's a lot of concern about the lack of what we call pedestrian refuge islands. So if you have a street and for whatever reason you have to stop in the middle of the street.

Often times there will be this kind of raised concrete area where a pedestrian can kinda stand until they feel comfortable proceeding.

At least once a week when I'm driving or I'm walking, I see somebody who either they have a cane or they're in a wheelchair, and every week at least, I see someone who's going across the cross-walk and I, the light turns green before they're across the street and it's awkward and also terrifying, because it's one of those situations where you could see the person going.

I'm not sure if I should just be a book as fast I possibly can, or if I should just hang out in the middle of the road. And then the cars are confused because the people in the cars, don't know. Do I go, "Am I going to hit this person? So the lack of pedestrian refuge islands. And then also the lights change very quickly.

Sometimes these lights change too fast for me, so I can imagine somebody who even though I don't have a mobile disability, I can empathize with the idea of if this were any more difficult for me, I would not make it across the street just... And you see in... You had a strong role in a same street. I can re-think That's the right corner. It's one of those where you sort of... I'm not even sure you could... It is hard to make it across that I end up, I can't remember how long that light is, but it seems about some of the time I end up just simply either barely making it or having to do a car to... It's not a street that's a... That's a multi-line it's massive, it's big and it's Laurel and assembly and I think that is one of the fastest lights that I've seen.

I go as far as to say that assembly is probably the busiest Street in downtown Columbia and it's, I think, I wanna say it's a six-lane road in a one-eyed.

B: I think it's at least five.

Yeah, yeah 'cause there's been ticking. There's the median, there's the medians that you're not led to cross for certain stretches of assembly. 'cause they got gates up there, yeah. And so, I don't know. A world in a semi-light seems to change awful fast. I don't know what's up with that. It just seems like it does. And that's not far from the transit center where you've got a lot of pedestrians because that's where the buses, the bus where it won. Starting in a... Yes, yeah and so then... So it seems like that is awfully fast as far as I can tell, I can make it across, but just barely or something. I have to go in for real time it and see, and see how that works, but I've been in those situations where you catch a light a little bit. I don't know if you've been in them where you catch a like just a little check-in or too late, and you're going across that street, and man, the cross traffic's coming in, you're in the middle of it, or anyone who's turning right on red. Yes, turn every one a red.

Oh yeah, so even if you have the right away and it's time for your part, to walk across the street. Stole yeah, you get stopped anyway.

J: Yes, I've had that happen where two or three cars turning front got to wait until that car goes off your left shoulder. Like I were getting precise. So when the car comes up, let's just say I'm using the left side, I have to wait until it's of parallel right with about left shoulder when I... You can tell it's going straight to go... You go straight along with it. So you use it as a shield to do anything else if you don't do it like that you actually can get hit because they'll turn and they're gonna turn it 25 miles an hour but they're not gonna turn on the car but that's right besides that cars, it's kind of like your shield almost because they're not gonna turn into that usually, but if you just go just on a dime, right as the parallel traffic goes somebody can turn right into... You had to actually turn very quickly, a few times and almost like a...

I'm walking this way and I had to do this all of a sudden so I've had to turn real fast to avoid being hit by turning traffic. I had to just stop on a dime, or turn or stuff like that.

And see, that was because I kinda stepped out a little too quick. So that's kind of one of those things you learn to kinda wait about it. You hesitate about that half-second and then you can tell...

B: So what are some things that we as a community can do to improve the quality of a desk? You're in infrastructure and transportation option. Just in South Carolina.

C: Well, I think with the day-to-day as far as what could I do five minutes from now, after I get off listening to this podcast definitely being very aware of your surroundings.

Often times it's really easy to be in a car and just have road rage where you don't really even see the other folks on the road as people anymore. It's that's a "andesitic that's in my way or that's a pedestrian that jumped out in front of me.

But just really kind of keeping in mind who's around you, whenever you're driving, and also trying to get out and walk as much as you can, I feel that because my first five years in Colombia, I didn't have a car.

And I think that really helped me build my empathy for people who, for whatever reason, either can't or don't drive because that's where I understood, crossing the busiest street downtown, assembly straight and that was when I realized, "Oh this is really hard for me in the rain to the try it in a wheelchair if you can't see that kind of thing. But definitely that awareness raising on your own but also we're thinking long-term so we have this policy campaign that we're working with the Department of Transportation to try to get... Just to try to get them to tweak a few things because we do understand they're the fourth largest state owner of roads, so they can't be everywhere all the time.

We're empathetic to that but we do have some recommendations for how they can make things better to make sure that they were reflecting local interests and the interests of all the different demographics, who use the streets all of the time, so different ways that you could take action to support Se Livable Communities Alliance, if you are a mayor business owner or organization leader, if you could sign our Policy letter of support and you can find that information on SE livable communities, dot org and then also you can sign up for our email list serve and if you were interested in this issue, if you're just really on fire about it, you can make that happen again. That website is S livable communities, dot org. Or you can contact me directly. Our number is 8-0-3-4-4-5-10-90.

B: Awesome, well that's all the time we've got for this episode, so thanks for being with us Corrine and Justin and thanks for listening during us again next month right here on the Access Aisle.

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