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National Disability Rights Network
Training and technical assistance on a range of disability rights related topics for the Protection and Advocacy system
Video Version:
What does it actually mean when disability advocacy is “level funded”?
What are federal appropriations, and why are they such a big deal for disability rights?
On this episode of National Disability Radio, Alden Blevins (Communications Manager), Stephanie Flynt McEben (Public Policy Analyst), and Eric Buehlmann (Deputy Director for Public Policy) pull back the curtain on the federal funding process and what it means for the Protection and Advocacy (P&A) network. They discuss the successful FY26 funding fight, why advocacy on Capitol Hill matters, and how everyday people can help. You also get the added bonus of hill-day survival tips, advocacy myths and truths, and a very important debate about coffee and tea.
Transcript:
Alden Blevins: Hello, and welcome to National Disability Radio. I am here today with two wonderful people who are about to introduce themselves. I am Alden Blevins, Communications Manager here at NDRN. I have my own lived experience with disability and I’m really glad to be here today. What about you guys? Who are you, What do you do?
Stephanie Flynt…: Yeah, I’m Stephanie Flynt McEben. I am also one of your hosts of the podcast and NDRN’s Public Policy Analyst. And I have beef with a music streaming app, and I’m not going to talk about which one, but let’s just say that this [00:00:30] music streaming app told me that I was 67 for Christmas this year. And then it had the audacity to… Oh gosh, what was the playlist the other morning that was recommended? It was Old Camping Man Sunday Morning, and it was really weird. Why? I don’t listen to old camping man music unless James Taylor and Chappell Roan and Taylor Swift count as that. But anyway, hope everybody else is having a good day. And hey, if Spotify thinks [00:01:00] you’re old, you’re just… I don’t know. You’re young at heart, anyway.
Alden Blevins: I think it clocked my age exactly. And I must say that I listened to a lot of Lady Gaga and Kesha in the last year.
Stephanie Flynt…: Yes.
Alden Blevins: And to be fair-
Stephanie Flynt…: You were in the 2010’s era.
Alden Blevins: They were still the two most popular artists when I was graduating from high school, so they clocked me. They clocked me for sure.
Stephanie Flynt…: Oh my gosh. Time to introduce Eric, who is our Deputy Executive [00:01:30] Director for Public Policy. How are you doing? It’s great for you to be here.
Eric Buehlmann: Great, it’s wonderful to be here. Evidently, your phone must be listening to my music then in that way [inaudible 00:01:44]
Stephanie Flynt…: Maybe so. I don’t know what’s going on, but I don’t know how I feel about it. And also, I guess… I don’t know. I guess the Spotify age thing is eclectic because my top artist was Taylor Swift, so I don’t know. Anywho.
Eric Buehlmann: So I’m Eric Buehlmann. I’m the Deputy Executive [00:02:00] Director for Public Policy. As Stephanie said, my first choice is not Taylor Swift, but my wife listens to it a lot. So when I’m in the car with her, that’s what I’m listening to.
Alden Blevins: This is National Disability Radio. We are the official podcast of the National Disability Rights Network. The National Disability Rights Network works in Washington DC and around the country on behalf of the protection [00:02:30] and advocacy systems, the P&As and the client assistance programs or CAP. We are the nation’s largest provider of legal advocacy services for people with disabilities. The first thing we want to talk about is some big and good news. The P&A network was funded for the rest of FY26. Can we get a hallelujah?
Stephanie Flynt…: Yay, woo-hoo!
Alden Blevins: The first thing I was just going to ask is, Eric, can you explain to us why it’s a big deal that we were funded and level funded, [00:03:00] and kind of what it took for us to get to this point?
Eric Buehlmann: In terms of being able to, why we were able to do this, it’s really our members reaching out to all the representatives, all the senators, making the case, all the good work that the P&As and the CAPs do, and showing all the examples and saying, “Look, if you don’t fund us, this is what’s going to happen, is that person with a disability is not going to be able to get accessible housing or accessible transportation, or the student’s going to be able to go to school or someone’s going to have an assistive [00:03:30] technology device or rampant abuse and neglect are going to be occurring in either the community or institution.” So they made those cases. Congress said, “We agree with you.” And the best we could hope for at this time was at least maintaining our funding and not losing it.
Alden Blevins: I think it’s really important to remember that this is not just numbers on a spreadsheet, this has real world impacts on peoples’ lives, the lives of people with disabilities, whether or not they can access enforcement of their civil rights, so [00:04:00] super important.
Stephanie Flynt…: Absolutely.
Alden Blevins: Just to peel back the curtain and give a little more context for some of our listeners, I just want to go ahead and ask the kind of general question of what are federal appropriations and what does that really mean when we talk about them?
Stephanie Flynt…: Yeah, sure. I’m happy to jump in a little bit here. Essentially what federal appropriations are is how Congress allocates funding. And so essentially, there is a long process as Eric kind of talked through a little bit [00:04:30] earlier, in terms of everything that’s been going on with the budget. And so individuals are able to make various appropriations requests to their office. But essentially in a nutshell, it’s essentially just how we get the funds that we need in order to do the work that we do.
Alden Blevins: And just kind of practically, what are the steps in an appropriations process or what can people kind of expect out of appropriation season? Oh
Stephanie Flynt…: Oh my goodness. Okay, so usually, [00:05:00] of course in the spring, we usually see a big influx of appropriations forms, which, we’re starting to kind of see that now with the House setting their committee deadlines for appropriations, so we’re starting to kind of see an influx of that now. In the Senate, we’ll probably see that a little bit later on as that comes down. But usually the offices will set their personal deadlines, their committee deadlines.
And then the appropriations bills, just kind of depending on where they sit, which, all of ours sit on the subcommittee for Labor, [00:05:30] Health and Human Services, Education and related agencies on both the House and the Senate side on the Appropriations Committee. And so there will be a House markup usually around June, as well as a Senate markup in July with the hope that we are able to go ahead and pass the appropriations, the funding that we need for the next fiscal year that starts on October 1st.
Alden Blevins: My next one is just why do you guys think advocacy on Capitol Hill matters [00:06:00] during appropriation season? The regular person might not realize how important this is and why.
Stephanie Flynt…: Yeah. In my experience, like you said, Alden, a lot of people don’t realize how important and how crucial that kind of advocacy is. But really and truly, that kind of advocacy is what helps us acquire our funding for services, particularly advocacy. So it’s definitely super important to be continuing to follow up with your members. Of course, meeting with your members if you can, [00:06:30] and their staff. Having a steady contact in their offices, things like that. And even just building those relationships in my viewpoint is a good form of advocacy and just making sure that they know who you are, they know what your programs do. They know how it benefits folks in their state/district, et cetera, et cetera, the constituency that they serve. So just making sure that, those points.
Eric Buehlmann: And the specific, the biggest requirement is staff [00:07:00] are always seeking information. You’re covering hundreds of programs, multiple issues. They don’t know everything that is going on. They can’t track everything at the same time because they just have information overload. So putting a face with a person, with the story, with the request in front of them makes the biggest difference, because then the staff begins to know who you are. But otherwise, they’re just overloaded with how much material they’re trying to cover and how much stuff they’re trying to do. And if you’re not in front of them, I mean, as [00:07:30] it’s basically said, if you’re not talking to them, you’re on the menu, you’re not the one that’s providing them the information.
Stephanie Flynt…: You’re not at the table, you’re on the menu, yeah.
Alden Blevins: That makes a lot of sense to me. I was also just going to ask, we’re all so excited and grateful that we were level funded for FY26, but what does level funding really mean? What has that looked like over the last couple years? And having that level or that stagnant funding, what does that mean in terms of the [00:08:00] P&A’s services or the take home impact?
Eric Buehlmann: It’s difficult for the P&As because level funding really is in a way, a kind of a cut. Costs are going up continually, healthcare costs are going up. Cost of travel, cost of everything is going up. So level funding ultimately means that they’re able to do less or they may need to shift from doing as much individual case work to more systemic work where you’re helping multiple people by solving one problem. [00:08:30] So level funding is great, especially when you’re facing the potential of cuts. But ultimately if you do that for many, many years, it ultimately means that the P&As and the CAPs will have less staff and able to serve less people.
Alden Blevins: Now that we’ve kind of grounded ourselves in a little bit of how this process works, we’re going to talk about the larger policy landscape that we’re all living in right now. What are some of the disability policy concerns we saw come to a head in 2025 and how do we think [00:09:00] that might influence our policy landscape for the rest of 2026?
Stephanie Flynt…: Oh my goodness. Do you want to start or do you want me to?
Eric Buehlmann: You go first.
Stephanie Flynt…: Oh, goodness. I think for me, the biggest thing that comes to mind is the dismantling of the Department of Education. We’ve definitely seen different things that have kind of gone ahead in that regard. And so obviously, there’s a lot of different concerns that are there in those types of things. And so [00:09:30] just continuing to monitor that and what all of that looks like. Of course, I’ll leave a little bit of the healthcare stuff to Eric since that’s more of his specialty, but of course, that is something that I would be remiss not to mention.
The various concerns around the Medicaid work requirements that will be taking effect and how that’s going to impact our community. So there are definitely a lot of different policies and a lot of different things that you don’t think about necessarily intersecting with [00:10:00] the disability community, but that are still having impacts on the disability community, particularly those who are members of multiple marginalized communities.
Eric Buehlmann: I think building on that for Stephanie is, it’s not just the Medicaid work requirements that are going to hit people. It’s just the massive amounts of cuts to the amount of funding that the states are getting. It’s sort of a partnership between states and the federal government. And if the federal government cuts their share of funding, it means states are going to be cutting their share of funding. And what those cuts [00:10:30] really mean in the long run is that unfortunately, not required services or waiver services are going to be the ones that are going to get hit. If they have to do it, the state will pay for it. If they don’t have to do it and the state’s not willing to put up the money, then those services are going to go away. And in our case, that means home and community-based services for the most part.
So not only are a number of people going to get kicked off of Medicaid because they’re having problems following the work requirements or understanding [00:11:00] what the work requirements are and/or having to go through getting re-certified every six months rather than every year, that’s going to mean more people are going to be kicked off. On top of it, you add in all the cuts and the states are going to look around and say, “Well, we’re losing $1 billion,” let’s say, in California, I think is the number they said. “How are we going to make up that gap?” And what they’re going to do is they’re going to say, “Well, these are required and required in the Medicaid program is institutionalized care versus [00:11:30] the ones that we choose to do on our own, which is home and community-based services. Well, if we have to do it, we’ll have to pay for it.” And that means there’s a gap and that gap is going to come out of home and community-based services.
Alden Blevins: Yeah. And I think this is kind of a great connection to that home and community-based services piece. I was going to kind of ask, generally speaking, what themes might we be seeing in Congress right now that could affect P&A programs or disability justice as a whole?
Eric Buehlmann: I do think one issue [00:12:00] that we’re encountering is more and more members that may not understand disability as well, or what the desires of people with disabilities are, and may listen to not just the person with a disability, they may be listening to their guardians or they may be listening to their parents. Not saying that they don’t know what the person with a disability wants, but if you want to go to the source, the source is the person with a disability.
So I think one of the themes, and I think this is why it’s critically important for people with disabilities to be involved in these discussions and [00:12:30] doing this advocacy, is you’ve got to put yourself front and center. And you have to say, “This is what I desire, this is what I want. I want to live in the community, I want to live at home. I want to be able to work in an integrated environment. I don’t want to be paid subminimum wage.” And if they’re not hearing from people with disabilities about that, then that’s a problem.
And I think what we’re seeing is sort of a return to sort of the old way of thinking, sort of pre-IDEA, pre-ADA. And people with disabilities should be [00:13:00] off to the side and not at the forefront. And so I think that theme is carrying over in a lot of the ways Congress and the administration are looking at these issues. And I think in terms of other themes, it’s, “We got to save money somewhere.” And their ideas of trying to save money is to cut programs, which actually in the long run, costs more. It costs more to be served in an institution than it costs to live and get served in the community. And [00:13:30] so we’ve really got to be making those cases. I think those are two themes that I’m thinking of.
Stephanie Flynt…: Yeah, for sure. And I think that another theme really is just broader justice in the civil rights community, just not completely and fully understanding disability. And so I definitely think that if we’re not careful with everything going on, we definitely could regress back a little bit more into the medical model as opposed to the social model. And I think that some of the demonstration in the legislation [00:14:00] that could potentially be introduced, and of course that we are closely monitoring and making sure that we’re continually keeping an eye out. And of course, we’ll keep folks in the network apprised of those things. But all that to say, I think that’s kind of a demonstrated action when it comes to their understanding of what disability is.
Alden Blevins: I love what you guys said, especially about people with disabilities being front and center and telling their own stories and determining, [00:14:30] telling the world what they really want and seek out in their lives. I think that that’s so important for people with disabilities to be in the driver’s seat. For those of you who don’t know, we do have a saying in the disability community that is, “Nothing about us without us.” So kind of speaking about some of the messages that have been happening in the last year, we know that a lot of things have become very polarized throughout the last year, 2025. What opportunities do you guys see for collaboration towards [00:15:00] a better future for people with disabilities? What efforts might be a good target for bipartisan support?
Stephanie Flynt…: Yeah. I think for me, definitely always on the hunt for bipartisan opportunity. Because the truth of the matter is that disability, even though it is being portrayed as a partisan issue, it’s not a partisan issue. It’s a nonpartisan issue. And so just kind of keeping that in mind as we continue to do this policy work. I think [00:15:30] what it boils down to really, at least a part of it, is messaging.
Because looking at the issues that are in the disability community, because they’re nonpartisan, I think that really, it comes down to it’s not about what you’re saying, it’s how you’re saying, it’s how you’re presenting it. When we’re talking to different offices, we want to emphasize different things that they are most concerned about or that may matter most to their particular constituency or the folks [00:16:00] with disabilities that they may serve. Those would be my things, but I definitely, even though it can be challenging at times, definitely just continuing to keep hope there.
Eric Buehlmann: I mean, there’s always a lot of different things. And as Stephanie said, you have to sort of tailor your message around what people are interested in. I mean, things like the Transformation to Competitive Integrated Employment Act, I think there’s a large number of people, and we’ve seen it in the states, they’re phasing out the subminimum wage, even in some [00:16:30] very conservative states. And so that’s something that’s garnered bipartisan support, that people should be paid at least the minimum wage for the work they’re doing. And that they should be integrated into the employment environment and not just in segregated workshops.
We were able to get a Republican co-sponsor for the Keeping All Students Safe Act this year, which would place some kind of federal restrictions on the use of restraint and seclusion in schools and provide money for [00:17:00] training, which is critically important so that the teachers know and the school personnel know what they do when they’re encountering tough situations. There’s a number of bills. I mean, ultimately disability is very bipartisan and it impacts everybody. So usually whether you’re a Republican, a Democrat or Independent, you either have a family member or know someone very close to you that has a disability. So you just got to frame the message right.
Alden Blevins: I love that you guys both mentioned messaging and disability [00:17:30] being affecting everyone. That’s part of my core messaging that I always try to put out there, is that disability can come for anybody. You can be a person who has no disabilities one morning and your situation could be different by that evening, depending on what happens to you in your life.
And even as you age throughout the lifespan, most of us are going to experience some degree of disability in our lives. So advocating for this [00:18:00] community now when you have the chance to is only going to benefit you when you inevitably become a part of it. I think that’s really important to remember. My kind of last question on this topic is just, what do you think you would want policymakers today to know most about our programs at the P&As?
Stephanie Flynt…: I’m going to yield to the executive overseer to start.
Eric Buehlmann: I mean, I think our members are hidden gems. I think that’s the biggest [00:18:30] thing, is that most people don’t know what a protection advocacy agency is and/or what it does. As I’ve said many times in my stories is I had met the Executive Director of the Vermont P&A for many times when I worked up on the Hill. Had no idea he worked for the Protection & Advocacy Agency. Talked to him about housing, talked to him about employment, talked to him about all these different things, had no idea that there was a Protection and Advocacy Agency. My second day at the job, I go into an NDRN board meeting and there he is, [00:19:00] sitting there. And I’m like, “Oh, that’s what a Protection & Advocacy Agency… Because I didn’t have a clue. So I think we’re sort of a hidden gem. And I think really, the big thing is that the P&As do a lot of work that other agencies can’t.
We have these really strong… I hate saying we, but our members have strong authorities to go in and investigate and monitor for abuse and neglect. If that’s going on, they can go in unannounced. They could do these kinds of investigations that other places can’t. There are [00:19:30] story after story of the police being kept out of certain places or Child Protective Services or Adult Protective Services. But the P&A goes in and is able to sort of expose that abuse and neglect. And that’s really the important thing. And I think people just need to know they exist. But there’s more than just the systemic work. Individually, they are helping people around employment or education or accessible transportation and housing.
So I just think there are ultimately hidden gems the more [00:20:00] you delve into it. And as you said, Alden, everyone’s going to become, in my opinion, a member of the disability community at one time in their life or not. Could be permanently, could be temporarily if you break your leg or something like that. And now all of a sudden, you begin to realize that yeah, curb cuts do make a heck of a lot of sense. And yes, automatic doors are very helpful and all those kinds of things. And so we just need to do a better job of sort of explaining the beauty of the work the P&As do and that [00:20:30] it’s not just these giant exposes of abuse and neglect, but there’s all the little individual work that they do that’s extremely important to families and people with disabilities.
Alden Blevins: We know in this world that policy is never static. There’s always a lot coming at us, coming at you guys, to kind of figure out and think about how it impacts our community. So my next question is just what do we think might be coming in the landscape of 2026? [00:21:00] It’s hard to speculate, but what should we be looking ahead towards as a community?
Eric Buehlmann: Election years are always a weird little duck.
Stephanie Flynt…: Yes.
Eric Buehlmann: Partly because Congress does not stay around that much, they like to go home and they like to campaign. Some would say they’re not here to do as much damage. But the administration’s still here, they could do plenty of damage. And so I mean, my expectation is there will not be [00:21:30] a lot that’s going to really occur. They’re going to do what they normally have to do, which is sort of the appropriations and try to get that done as well as they can before the elections. There may be some messaging bills that they try to work on, but I’m not expecting a lot of things to actually get passed and a lot of work to get done.
But I think this gets back to the theme issue and that kind of discussion, which is you need to be laying the foundation for the members that are here now and those that are running, especially [00:22:00] in someone in a seat where a member’s retiring or if there’s an open seat. And you need to be making sure the candidates understand the needs and desires and wishes of people with disabilities so that when they do come here, they already have at least some based foundation. So I would really look at ’26 as you got to focus on funding because that’s going to have to happen no matter what. And then making sure that your candidates and then making sure that your members of Congress understand about disabilities so that when [00:22:30] they come back next year, that they’re really almost ready to get going on the issues of importance.
Stephanie Flynt…: Yeah.
Alden Blevins: So much of what we do is kind of playing a little bit of defense about whatever is going on in the larger policy landscape or the news cycle of that week. But we obviously also have our own policy priorities that we would like to see and that we would like movement on in the next year. So I was just going to ask, what are NDRN’s top three [00:23:00] public policy priorities?
Eric Buehlmann: I think if you’re looking in the proactive world, that’s tough in this day and age. I think our policy priorities tend to be much more in the defensive world now, Which is, there’s sort of a 1A and a 1B. You always have the money aspect of it, the appropriations aspect of it, and making sure that our members have hopefully increased funding, but at least level funding. The second, as I talked about before, is our members have amazingly strong authorities [00:23:30] to sort of ferret out abuse, neglect, fraud and waste. And we got to make sure that those aren’t reduced. And so that’s sort of the other big thing.
I think structurally, we’re looking at the administration and saying, “We need to make sure that disability is still centered here.” The Department of Education is extremely important for students with disabilities and the amount of work they do. And around employment because the vocational rehabilitation system is there. Health and Human [00:24:00] Services impacts people with disabilities in huge, humongous ways. And so we got to make sure that those structures stay strong, that are providing the training, the technical assistance, the support to all the different programs that support people with disabilities and that they’re strong.
Alden Blevins: Yeah, absolutely. I heard education, I heard healthcare. I think these are all bread and butter issues for us and for the community at large. [00:24:30] It can just be tricky to decide when and where to focus your attention.
Stephanie Flynt…: Right. And also too, again, going back to that, how do we mesh the priorities in a way that we could potentially try to work with folks and get stuff done? And I think that that’s kind of where that point of collaboration comes in. Figuring out what the priorities of various offices are and see, how can we kind of mesh ours together? Where’s the common ground? What can we work together [00:25:00] on in order to make things better for disabled folks?
Eric Buehlmann: And I think as Stephanie said, this is where these relationships come into effect, because you have no idea what’s going to be the big issue of the day. Today it may be X, tomorrow it’s going to be Y. The day after it’s going to be Z, and the staff are just overwhelmed a little bit. But if you have those relationships with them, if something comes up and you need to get in touch with them, you shoot them that email, you send them that note [00:25:30] and they know who you are and they’re willing to look and listen to figure out what you’re saying and where it needs to fit in their priorities.
They don’t know who you are, this gets back to the, if you’re not at the table, you’re on the menu, then they’re not going to understand why this is a problem because you’ve not laid that foundation. So that’s where those relationships come to be critically important, because you just never know what’s going to pop up.
Alden Blevins: My next question is, what are kind of the strategies or things that [00:26:00] everyday folks can do to kind of help or support? There’s a lot of overwhelming information coming at folks on all sides. And it would just be really nice if we could know what would be most helpful in terms of getting that community support to advance our priorities.
Stephanie Flynt…: I think for me, the biggest thing that I can think of there is just making sure that your voice is being heard and that you are able to kind of amplify your voice when it comes to these issues. [00:26:30] Making sure that you are reaching out to your senators and representative, things of that nature. Of course, there’s the number for the Capitol switchboard and we can certainly put that in the show notes if that’s helpful to people.
But for everyday folks, it’s so interesting. I’ll be on Facebook and I’ll just see different things and it’ll be videos of people just calling their senators and representative. And it sounds scary, it sounds daunting, but I promise you, getting [00:27:00] constituent calls is definitely something that is super, super helpful in terms of advocacy there. So definitely, definitely recommend that.
Eric Buehlmann: And as Stephanie said, take advantage of those action alerts, take advantage of those days. If you’re looking at your state and local legislatures, a lot of them have disability days where a number of groups will come together and they’ll go to the Capitol and they’ll talk up their issues. Take advantage of those. In terms of the federal, try to keep track of if they’re going to do a town hall or if they’re going to be having a [00:27:30] get together. And go and have a discussion with the staff and the members that are there. And then when it comes to the campaigns, get involved with the campaigns.
Make sure that the candidates have some kind of disability platform as part of their work and what they’re doing. Because ultimately if you’ve, I’m going to say trained, trained them ahead of time, then when they come to Congress or they go into the state legislature, you don’t have to explain as much. You’re not having to spend your time explaining why this issue is important. [00:28:00] You get to jump to, “This is why we need to do this.” So you need to be working at those candidates. You need to be looking at their platforms and you need to be talking to them so that they know that you’re there.
Alden Blevins: Absolutely. I think a lot of times people feel overwhelmed with just knowing how or why to help. And I love that you even mentioned people posting their calls onto social media, because I think that’s another avenue that folks can use. Talk to your friends, talk to your neighbors, talk to people that you talk with online about how these issues impact you [00:28:30] and your life personally. I think that hearing those stories from people with disabilities can be really impactful as well. All right, I’ve got some quicker round of questions just to kind of help folks get to know both you guys and your work.
Stephanie Flynt…: Yay.
Alden Blevins: The first one is just almost similar to two truths and a lie. If you could give me one myth and one truth about federal advocacy, what would you say?
Eric Buehlmann: I think it’s sort of the flip side of the same coin. To me, [00:29:00] the myth that’s out there is, “My voice doesn’t matter.” And that, “Whatever I say isn’t going to be heard by the staff, isn’t going to be heard by the member and I’m not going to really have an impact.” It does. Again, as I said early on, staff are constantly looking for those sources of information. They cannot keep track of all the topics they cover, all the bills they have to do, all the differing appropriations they’re following. They can’t. They rely on the constituents to provide them information. And if you are a trusted resource and providing them good information, [00:29:30] you’ve got your in and they’ll understand and they’ll follow what you’re asking them to do as best they can.
So I think that’s the myth, is that their voice doesn’t make any difference. To me, the flip side of that is the truth is it does make a difference. And so if you’re not engaged, then you’re automatically losing. The disability community needs to be and put itself front and center. Because as Alden said, people with disabilities are a majority of this country. You will eventually be a member [00:30:00] of the disability community. And so therefore, you need to make sure your voice is heard. And so I think the truth is your voice does matter, the myth is people think that it doesn’t.
Stephanie Flynt…: I think for me, a myth that I would say, not as interesting as Eric’s, but I think a myth that I would say, and these are probably for people who are kind of newer or just more on the outskirts of things, is that a bill is going to pass overnight. That’s not how policy works. Usually it takes lots of reiterations of introduction [00:30:30] and stuff, but that’s how it’s designed. And so I think that’s kind of where my truth comes in or where the truth comes in for the myth versus truth, is that policy is designed to take a while, even though it can be frustrating at times, but that’s in order to ensure the appropriate checks and balances and whatnot. So no, you’re not going to enter in and pass a bill in two days. Hate to break into any hopefuls, but you know.
Eric Buehlmann: No, that is a huge one. People think that policy moves at a lightning quick pace. [00:31:00] It is a snail.
Stephanie Flynt…: Yep.
Eric Buehlmann: It takes years. I worked eight years on election reform before we were finally able to get it through Congress. And reauthorizations, I mean, this is one of our smaller ones. The Assistive Technology Act program was last reauthorized in 2004. We finally got the next reauthorization done in 2021. So it moves slowly and you have got… I guess that’s another thing, sort of following up on what you’re saying. The truth is you have to stick to these people.
Stephanie Flynt…: Yes.
Eric Buehlmann: You can’t just say, ” [00:31:30] I talked about this once and it’s going to get done this year.” No, you’re probably back next year.
Stephanie Flynt…: Not how it works.
Eric Buehlmann: And you’re probably back the next Congress and you’re probably back the next Congress. So you will repeatedly have the same conversations.
Stephanie Flynt…: Yes. Especially with staff turnover, too. There are going to be different staff members, folks may move back to the representative or the senator’s districts or their own home districts or change roles, what have you. But there can sometimes be a lot of that [00:32:00] turnover. But that can also be a good thing, too.
Eric Buehlmann: But Stephanie, I think we’ve got another good truth and myth.
Stephanie Flynt…: Oh, okay.
Eric Buehlmann: Which is, the myth in my mind is if I feel like the member’s not supportive or following what I’m talking about and caring about disability, then it’s not worth my time. The truth is staff do a lot of work.
Stephanie Flynt…: Yes.
Eric Buehlmann: And you may encounter a member that is not really [00:32:30] interested in disability, doesn’t really care about disability, but the staff is very interested in disability. And so your message can get conveyed from the staff to the member. You may not always get everything exactly the way you wanted from the member, but you’ve moved him in a direction, or her, in a direction that they weren’t going to go without the staff.
Stephanie Flynt…: Exactly, exactly. Staff definitely have a lot of influence when it comes to different member priorities and things like that, that might not usually be on their [00:33:00] radar, such as disability.
Alden Blevins: Actually, I caught Eric saying something yesterday that I thought was so impactful. Somebody was expressing disappointment that their meeting was with a baby staffer. And I heard Eric say, “That baby staffer could be in charge in 10 years.”
Stephanie Flynt…: I was going to say, like a Chief of Staff in five years-
Alden Blevins: Yeah, you never know what inroads you’re making when you get into those rooms. And you should take the chance once you’re in that room, to make the case for people with disabilities.
Stephanie Flynt…: Yes.
Alden Blevins: This next one, I’m [00:33:30] hearing a lot of themes of perseverance, maybe having to stay on people, having to return year-to-year. This is just a silly question, but what is your Hill day fuel of choice? Is it coffee, is it tea? What keeps you going?
Stephanie Flynt…: I think that mine is probably either, probably Celsius. And then I don’t know if y’all have ever had the Mary’s Gone Crackers, but I like to have little hummus things with me. And so I’ll do the Mary’s Gone Crackers with some hummus on the Hill. And so that’s really good to eat between [00:34:00] meetings and stuff, but they’re really good. They’re quinoa seed crackers, gluten-free, garlicky, basil. I don’t know, they’re really good, especially with hummus. So I guess for me, that’s my food and caffeine.
Eric Buehlmann: And Stephanie no doubt, could tell any of everybody what mine is.
Stephanie Flynt…: Anything gluten-free/unsweetened iced tea from McDonald’s.
Eric Buehlmann: Yep, bingo. I’ve never had coffee in my life.
Alden Blevins: Wow.
Eric Buehlmann: Yeah, I’ve never had coffee in my life.
Stephanie Flynt…: I thought you would at least-
Eric Buehlmann: Nope, never had coffee in my life.
Alden Blevins: Just not even curious?
Stephanie Flynt…: Not a sip?
Eric Buehlmann: I’m curious, [00:34:30] but I’ve never had it. I’ve now reached the age of, “Why should I now start?”
Alden Blevins: This is so fair, because once you start, it’s hard to stop.
Stephanie Flynt…: You’re not going to be able stop.
Alden Blevins: It’s real hard to stop.
Stephanie Flynt…: Especially when you find a roast that you really like.
Eric Buehlmann: I’m a caffeine addict, don’t get me wrong. For many years it was Dr. Pepper, Diet Coke.
Stephanie Flynt…: Diet Coke.
Eric Buehlmann: Doctor said, “No.” Now I’m an unsweetened tea… Well, I’m not going to say always unsweetened tea, but it’s always usually some form of iced tea.
Alden Blevins: [00:35:00] Yeah. And sometimes you sneak in the sweet tea as a treat, I assume?
Eric Buehlmann: No, not really. I’m not a big fan of sweet tea. I find it too sweet.
Alden Blevins: Wow.
Stephanie Flynt…: You have to have the right sweet tea, though.
Eric Buehlmann: Yeah, I’m not from the South.
Stephanie Flynt…: I was going to say-
Eric Buehlmann: I’m in Virginia, but I’m not the South.
Stephanie Flynt…: They don’t make good sweet tea up in the DMV if you want good sweet. Actually, they just started carrying Milo’s at my local grocery store, so that’s what I recommend.
Eric Buehlmann: I’ve seen Milos. Milos is good?
Stephanie Flynt…: I love Milos, yes.
Eric Buehlmann: Okay, I’ll have to get that one.
Stephanie Flynt…: So good, yeah. I mean, it’s sweet, but it’s not too sweet. Anyway.
Eric Buehlmann: See, I find it too sweet. I’ll [00:35:30] mix it with unsweetened iced tea at times. I grew my tea at home. And what I’ll do is I’ll pour a little lemon iced tea in and sort of mix it, but I find it too sweet. But yeah, I’ve never had coffee in my life. Coffee ice cream once or twice, but never-
Stephanie Flynt…: Okay, but that’s really good.
Eric Buehlmann: Nah, no.
Stephanie Flynt…: No?
Eric Buehlmann: No. Coffee smells great. I love the smell of coffee, but I’m not going to try it now if I can avoid it.
Alden Blevins: Good for you. My next one [00:36:00] is just, what is your go-to story when speaking with folks on The Hill? Do you have a P&A story that you feel like you come back to? Do you speak about issues more generally or do you have a go-to story in your back pocket?
Eric Buehlmann: Well, I mean, I think the one I always fall back on is the Kaufman House in Kansas. There was a place in Kansas. I think if you just Google Kaufman House in Kansas, you’ll find it. Basically, this is one of those examples where the P&A was the only one that got in. These [00:36:30] were a husband and wife that were running a, I guess I’d call it a group home, that were doing unspeakably horrible abuse and neglect of people with mental illness. And the state had been called in a number of times, the local people had been called in a number of times, and they just shut the door on them. The P&A went in and exposed the whole thing, basically showing what was going on there.
They got convicted of a number of crimes, they were sent away to jail. To me, that’s the example that I will go [00:37:00] to a lot, is without the P&A, these people would’ve been just still going through abuse and neglect. I mean, I think the P&As are creating stories every single day, honestly. The number of reports that come out from P&As, we just got one from the Maryland… Maryland, wrong M. Minnesota P&A, about the use of seclusion with some amazing pictures of the various seclusion rooms in Minnesota that they had come upon.
I think they’re occurring every single day and all these reports that are coming out. [00:37:30] Our members are in all sorts of facilities, just exposing abuse and neglect. Unfortunately, some of the stuff we really can’t talk about is they’re exposing the waste, fraud and abuse that’s occurring at times in the representative payee program because people aren’t using the benefits to the benefit of people with disabilities, to the beneficiaries. But the one, if you were going to ask me the one, it would be the Kaufman House. And Nancy Jensen testified [00:38:00] in front of Congress on the importance of the P&A program. She’s written some books on the issues that arose, but that would be the one go-to.
Stephanie Flynt…: Yeah. I think for me personally, it really just varies from office to office and various priorities. I will say that one thing I do try to do before meeting with particular offices is I try to reach out to the P&A, just to see if there are any particular stories or any particular things that I should highlight going [00:38:30] on in their state for their senators or representative, or even if there’s anything specific in their district. Eric brought up the report that Minnesota did on restraint and seclusion. And one thing that staffers love is data.
So if you’re able to kind of bring in a visual, say like the report or even send in a report of what’s been going on along with a story, along with data, that’s really going to get you far. And so those are things that I really [00:39:00] try to bring, just tangible stuff that they can take back to their higher ups in order to try to get different things up the chain, in order for us to get the support that we’re wanting to get from that particular office, whether the goal is co-sponsoring a particular bill or sponsoring something, or whether the goal is just general support or flagging something. Just making sure that you have those materials that folks can take back.
Alden Blevins: Yeah, absolutely. And I [00:39:30] think what Eric said about the network generating stories all of the time, every day.
Stephanie Flynt…: Yes.
Alden Blevins: Where I sit, working in communications, is I try to share a story. At least every week, there’s a new, new story coming out about something that a P&A is doing, whether it be work related to abuse and neglect, whether it be work related to some states, they’re already talking about the Medicaid waiver programs and how they can apply some systemic advocacy to ensure that those are protected through the changes [00:40:00] coming in the Medicaid landscape. There’s just always something to be aware of that’s going on. And I think that really harnessing all of those stories together presents a really strong case for what our network is able to do.
Stephanie Flynt…: Absolutely.
Alden Blevins: Yeah. I’ve been told that maybe you’ll have a Hill day or appropriations pun and/or joke?
Stephanie Flynt…: I always have a joke, you know this.
Alden Blevins: Okay, so?
Stephanie Flynt…: Oh my goodness.
Alden Blevins: Let’s get a drum roll.
Stephanie Flynt…: Yes. All right, [00:40:30] so it’s more of a question for Eric.
Eric Buehlmann: Oh, no.
Stephanie Flynt…: Are you ready?
Eric Buehlmann: No, because we did not test this out beforehand.
Stephanie Flynt…: Sorry, okay. How would you describe the appropriations process?
Eric Buehlmann: How?
Stephanie Flynt…: It’s fund.
Alden Blevins: So much fun-d.
Stephanie Flynt…: So much fun.
Alden Blevins: So much fund.
Stephanie Flynt…: Oh my goodness.
Alden Blevins: Incredible.
Stephanie Flynt…: But yes, that is my joke of the month. I’ll be here next month, assuming that I’m not kicked off the podcast [00:41:00] yet. Sorry, Michelle, you weren’t here for the joke, but I’m sure you’re actually laughing even though you pretend you don’t like them.
Alden Blevins: Michelle is groaning from afar.
Stephanie Flynt…: Yes.
Alden Blevins: Yes.
Eric Buehlmann: Stephanie’s puns get us through the day.
Stephanie Flynt…: Yes, they do. See, I knew there was a… Yep, there we go.
Alden Blevins: You got to laugh, you got to laugh.
Stephanie Flynt…: Yes, exactly. Laughing is the best form of self-care when it comes to this kind of work, that’s for sure.
Alden Blevins: Absolutely. It’s important to remember that congressional budgets and federal decision [00:41:30] making say a lot about whose rights are protected and whose are not, what voices are included, what voices are not. And I’m very grateful that I got the chance today to sit down with two of my amazing coworkers and hear more of their voices, get to share more about the amazing work that they do for our larger community. This has been National Disability Radio, where we highlight issues that impact people with disabilities. If you enjoyed this episode, be sure to subscribe and continue the [00:42:00] conversation at ndrn.org or anywhere you get your favorite podcasts. Thanks for listening. Until next time, let’s keep working together to create a world where people with disabilities can thrive.
Stephanie Flynt…: Bye.
On this episode of National Disability Radio, we sit down with award-winning recording artist, advocate, and author Lachi for a powerful conversation about disability pride, music, and unmasking.
Lachi shares her journey, from navigating the music industry as a blind artist, to founding RAMPD, a coalition amplifying disability culture across the industry. We talk about what it means to say “I identify as blind,” move beyond the medical and social models of disability into a cultural model rooted in identity and joy, and remind listeners that no one can defeat someone who hasn’t given up.
From glam canes to Grammy stages, this episode is about claiming space, rejecting internalized ableism, and turning perceived flaws into flexes.
Transcript:
Alden Blevins:
It’s Lachi? I feel very-
Lachi:
Lachi like Versace.
Alden Blevins:
Lachi like… Oh, I love that.
Michelle Bishop:
That is the best way to explain it.
Lachi:
I mean, but you know what I’m saying? Come on.
Alden Blevins:
Well, we’re really excited about having you today because we’re all music lovers in this group here.
Michelle Bishop:
Yes.
Alden Blevins:
We talk about music all the time.
Michelle Bishop:
So much.
Lachi:
Good, good, good, good, good, good, good. I’m in the right place.
Michelle Bishop:
Hi everyone. Welcome back to National Disability Radio, the official podcast of the National Disability Rights Network. I am Michelle Bishop, 1/3 of your podcast hosting team.
Stephanie Flynt McEben:
And I’m Stephanie Flynt McEben, public policy analyst here at NDRN.
Alden Blevins:
I am Alden. I am a communication specialist at NDRN and I am so excited today, like I mentioned, we’re all lovers of music, so we got a guest that I’m really excited about. Lachi is an award-winning recording artist and a recording Academy Grammy’s national trustee. She’s also a disability advocate who’s been breaking barriers in the music industry and beyond. She’s the founder of RAMPD, which by the way, is such a fun play name. I really love that. And the author of the upcoming book, I Identify as Blind. So without further ado, Michelle, you’ve got some questions to kick us off, I think.
Michelle Bishop:
Yes. We’re so excited to have you with us. As Alden said, we are. We’re huge music lovers. I’m pretty sure we spend most of our meetings where we allegedly plan this podcast just talking about music. So you’re absolutely in the right place today, but to get us started, I mean, you’ve been open about the fact, and I’m just really interested in this as a disability rights podcast. You’ve been really open about the fact that it took you some time to really embrace your identity as a blind and disabled woman, especially in the industry that you’re in that often really rewards conformity. Can you tell us a little bit more about that journey for you, both as an artist and as someone navigating just the world with a disability?
Lachi:
Okay. Yeah, for sure. Hey, everybody. Lachi here, Lachi like Versace. I am a Black woman with cornrows, chilling here in New York in my studio. I also identify as blind, I identify as neurodivergent, and I identify as an Aries. So do with that what you will.
Michelle Bishop:
All the important points right there.
Lachi:
All the important points like name, age, sign. Thank you. Okay. Yeah, but I’m really glad to be here. And thank you for that question, and thank you for having me. So music has always been a very integral part of my life of growing up. Where other babies would kick in the womb, when she was pregnant with me, I was playing the piano in the womb. I don’t know how she got a piano in there, but she’s not a liar, so I’m going to take her word for it. When I was super-duper young, I didn’t really have a lot of friends, especially because of the fact that I had differences and this and that. And so I would take to music to, I guess, understand the world better and have the world understand me better. I just knew how to express myself through song and it just said the things I needed to say. It was the prayer I needed.
And because of music, I started to find confidence in how to speak and how to behave and how to act. And as I got older, when I was growing up, disability was not necessarily a thing people talked about a lot in schools and teachers didn’t know what to do. My parents didn’t really know what to do. And so I would always just turn to music. It’s actually right now I’m working on a children’s album because I think that kids need to hear music that has to do with disability and neurodivergence, as well as their parents as they grow up. When I got into college, I started wanting to do music, but I studied business and finance because when I told my parents I wanted to do music, they were like, “That’s not how you spell doctor.” because they are Nigerian immigrants and everybody else in my family went to either med school and blah, blah, blah. And I was like, “No, I want to do music.” But I did get a day job after school, after college, and didn’t love it because this girl is not going to exist behind a desk.
So I ended up going to South by Southwest and I got signed actually from playing the guitar at a hole in the wall spot that nobody was at, except for this A&R apparently. So we got signed to an imprint under EMI, which was a major label back then, and we started touring and music then became my life. Now today, why wouldn’t I pay my respects back to music? I mean, it’s because of music that I was able to really lean into who I am, my disability, my confidence, et cetera. So because of that, because of how much music has given to me in my life, I’m here using music to give back to other people with disabilities. Now, your question was essentially, how do you sit here and try to bring about change for disability in an industry that is not only about conformity, but also about like, “Hey, pick me to exploit.” is essentially what the music industry is. You’re raising your hand to be exploited and that’s what kind of authenticity is that?
But at the end of the day, music is some of the truest forms of storytelling. And I think to myself, just the way that hip hop has amplified Black culture and the way that country music has amplified rural culture and the way that different global musics have represented different global cultures. I want to use music to amplify disability culture. I want to use music to amplify disability stories and feelings that are difficult to put words to, that are words of the soul, which is essentially what music is. And so I started going to studios and realizing things weren’t as accessible as they should be. I started speaking with organizations and realizing things weren’t as inclusive as they should be. And the response I kept getting was like, “Oh, well, there’s nobody with a disability in the music industry, so why would we make these measures?”
And so I have made it my life’s goal through RAMPD, which by the way, the best thing we ever accomplished was our acronym, not us working with the Grammys to get sign language on the red carpet, not us getting these partnerships with title, Live Nation, Spotify. I mean, we’ve done so much, not just for artists, but also for professionals. And we’ve started to realize something really interesting with the work we’ve done with RAMPD. We are getting people joining our membership who are director level folks, who are label owners, who are like the big wigs that write the checks, and they’re like, “I’m neurodivergent. I’m actually hard of hearing. I have a TBI.” And so when I originally set out, they said, “We don’t do disability inclusion because nobody’s disabled.” That was three years ago. Now I’m like, not only are there neurodivergent and disabled music professionals out here, but we all are. So really to conclude, it’s just that everyone is navigating trying to make it out in this world, but everyone’s masking.
Everyone feels that they have to change some part of themselves to be as close as they can to what success looks like, be as close as they can to what “beauty” looks like, what winning looks like. But really all it is internalized ableism. And I say, as soon as we drop that internalized ableism and we really start to sit in who we truly are and we start to recognize our perceived flaws as flexes, that’s when we truly start to win. And so that’s what we’re finding out with RAMPD, that people are like, “You know what? I’m tired of navigating this difficult industry with the added layer of having to mask.” And so that’s why I do what I do.
Michelle Bishop:
Yes. And honestly, as ridiculous as it sounds that they say to you, “Oh, there aren’t any people with disabilities.” When I tell you, we see that in everything that we do. I do voting work at NDRN and we’ll have elections officials tell us, “This polling place isn’t accessible, but there aren’t any people with disabilities that vote here.” And it’s like, “What? You realize we’re everywhere and we do all sorts of things.” Maybe the reason they think there’s no people with disabilities here is because they’re stuck outside and they can’t get in because you didn’t make it accessible, just a thought. But I mean, it sounds like coming up against all that is really, correct me if I’m wrong, helped you to develop that identity and that disability pride in the industry. When did you first say, “I identify as blind.” and what did that mean for you?
Lachi:
Well, so when I first came into really doing the disability thing, really leaning in, I wanted to find out more influencers or thought leaders and such with disabilities. I didn’t really know that many people. This is pre COVID, 2018, 2019, that kind of thing. And so I came across an influencer, her name is Molly Burke, and we’re great friends now, but I didn’t know her back then. I had just seen her tagline and it had said, “I’m Molly Burke and I’m a YouTuber who happens to be blind.” And for some reason I was like, “I don’t know if I love the happens to be blind thing.” I was like, “Well, I’m proud of being blind. Blindness is part of my identity. I don’t just happen to be a woman. I don’t just happen to be a Nigerian. I don’t just happen to be all of the things I am.” And so I would go to… I was touring… We’re always touring and every time I tour and do a show, I do a comedic open where I just introduce myself, I do a quick self-description, et cetera.
And in my self-description, I would say, and I don’t just happen to be blind. My blindness is part of my identity, has given me all of the opportunities I have, and it’s really made me a deeper blah, blah, blah. It was just too long. So I had punched it up to be, “My name is Lachi like Versace. She, her, I’m a Black woman with cornrows and I identify as blind.” And the interesting thing about that is people took onto it. They were like, “Oh, that’s cool, nice and punchy.” But whenever I would say it in front of a large crowd or like I’ve said it on interviews or during commercials, I would get this weird, I don’t know, pushback of like, you can’t identify as blind. Blindness is an identity. It’s a medical condition. Or they’ll be like, “Do you read braille or not?”
Or they’ll be like, “We don’t want people to think trans blindness is a thing where you just have a blind identity.” And then you can be like, “Well, I’m blind today, so that’s my identity.” And I thought that was really fun. I was like, “Look, everybody’s upset. They’re talking about blindness though.” So I really leaned all the way into it. And I have to say, I am super proud of my disability identity. Was it music that brought me there? I think in a sense and in a way, like today I have a few songs, you guys are music lovers, I have a few songs out that really talk about my disability pride. I think that a lot of the times as we navigate the world, masking our disability, masking our chronic condition, our difference or whatever, we end up overcompensating. We end up building up this really, really thick problem solving muscle or this really, really thick how to get around things muscle and we overcompensate.
When we’re finally accommodated, when we finally get to a place where we’re accommodated or we have the tools we need, we’re coming in like bulk as hell. We’re coming in with problem solving muscles. We’re coming in with all of these things that we had to build up because of navigating the world differently, because of every day working through this very difficult maze that is living a life unaccommodated, then when we finally are accommodated, then we are killing it and crushing it. And how could you not be proud of that? How can that not give you a sense of pride? So the songs that I would love for you guys to check out that are mine is I have a song called Life on Hard, which has gone viral several times on Instagram. I’m known as an Instagram rapper, which is like, what? Hello, I do disability advocacy. Look at that stuff.
But anyway, so I have a song called Life on Hard, which is essentially about just winning the game of life, playing it on the hardest setting out here while people are still trying to consult the manual. I have another song called Professional, which is oftentimes when I walk on the stage, people see the cane and they’re like, “Aw, she’s going to do a song for us. Is this from Make a Wish Foundation?” And then I bust out these raps or I hop on the piano and I go ape on this piano and then they’re like, “Oh, snap. What? Okay.” And I’m like, “Bro, I’m a professional artist. I’m not object for pity to make you feel good because you felt weird on a Monday and you didn’t feel like getting up for work, but it’s like, she could do it. So can I.”
I’m like, “No, I can do it. You most likely probably just can’t.” So that’s what that song’s about. And then there’s The Bag, and The Bag is just essentially like, I’ve been told no so much like, “No, you can’t. No, you’re not good enough. No, we don’t want you.” And I’m like, “You know what? Yes, I am good enough and I deserve everything. So I’m going to throw everything I deserve in the bag, which is everything.” I don’t know. I would not be the person I am if I didn’t love all parts of myself. And that includes my disabilities, that includes my neurodivergences and all of the other wacky, weird body jazz that I bring with me everywhere I go.
Michelle Bishop:
Lachi, can we maybe, do you and I just FaceTime each other every morning and hype each other up?
Stephanie Flynt McEben:
I was literally about to say the same thing. I would like in on a true call.
Michelle Bishop:
I don’t know if you know. Actually, I want to say quickly, I know some of those songs actually from social media, but they’re real. They’re so real. So people haven’t heard music, go check it out. I don’t know if you know one of our co-hosts, Stephanie is blind. You’re speaking directly to her soul right now.
Stephanie Flynt McEben:
I literally just texted them in our podcast group text and I was like, she’s totally speaking to my soul RN, but of course I don’t want to interrupt anything.
Michelle Bishop:
No, I know you’re dying to talk to her about the book, Stephanie, and take it away.
Stephanie Flynt McEben:
Yeah, no, absolutely, for sure. And as somebody who is blind and who also identifies as a blind person and definitely does not identify with the medical model of disability, clearly gotten to more of a social model. But yeah, in terms of going through that journey of accepting all of who you are and everything about yourself, for me, I mean, it took a minute, especially when you’re talking about your experiences as a child and I totally feel that. I was that girl playing the harmonica on the jungle gym by herself. Anyway, this is about you. This is not about me, but I’m just saying that I totally relate to you on a spiritual level. And given that, I would love to know, were there any particular moments when it came to writing the book that were particularly hard or healing? Because I mean, I think that we all know that it’s not always a linear journey. Some days are going to be harder than others. And so would love to get your perspective on that. And I think that our listeners would be interested.
Lachi:
Yeah, absolutely. The journey for me has been one of constantly unwrapping this amazing gift. I always try to use that as the visual, if you will, of you have this big present and you get to unwrap it and then you just keep getting something cooler inside and then you get to unwrap that and you get something cooler inside and you just keep unwrapping this beautiful gift that is yourself. But you don’t realize that when you first get the box, the amazing stuff that’s going on inside, and it takes time to get to it. So a lot of times growing up, I would kick myself in the butt of, I wish I had come to this when I was so much younger. I wish there were people out there when I was younger, role models that I could look up to when I was eight years old and pointing on the TV and saying like, “Okay, well, I mean, I understand that Ray Charles existed, but that’s not going to…”
Stephanie Flynt McEben:
Stevie Wonder is here, Ray Charles is here, but we need more of us. Hello.
Lachi:
We need more of us. Hello. Exactly. And so this time and place where I am right now is where I needed to be for this to work. So I can’t really kick myself in the butt of like, “I wish I had this. I wish I knew this so much earlier. I would’ve been so much further.” That kind of thing. You have to be where you got to be where you need to be. Even right now, this conversation we’re having right now is going to have been necessary for the next thing that is happening in our lives. And just the other day, I was hanging out with Queen Herby, who’s been one of my favorite more modern rappers. I just did a thing with Apl.de.ap. I have done some stuff with Black Caviar. Folks that I’ve looked up to, I’m having the opportunity to Snoop Dogg.
I’m having the opportunity to work with these days because of the fact that I am here at the right time now. So when I was writing my book, we were peeling back all the layers. I’m a generally very positive and energetic, social butterfly type of person today. But it’s interesting, I wasn’t always this person and I had to unpack all the layers to get there. One of the biggest things that happens to me, so I’ve always been low vision. So I was born with relatively low vision and it stayed the same throughout my teens and early 20s. But one day I woke up and my sight was just gone. Boom. So the interesting thing is anybody listening would be like, “Oh my God, if I woke up and my sight was gone, I would just die or I would not know what to do. My life would be over.”
Stephanie Flynt McEben:
Yep. Heard that a million times. Yes.
Lachi:
But for me, it was weird because I was already low vision, so I was going from level one to the underwater level or whatever. So it wasn’t like that life changing of a thing. I was already using screen readers or Zoom text. I was already doing stuff of that nature. So I wake up blind and I’m just like, “Okay, I guess this is it. This is the day that they told me was coming.” What had ended up happening was my corneas had erupted. And so I went to the doctor and he was like, “You’re going to become completely blind. You’re going to go from this much worse vision than you’ve had to complete blindness over the course of time.” So here you go, here’s a coupon. Bye.” or whatever. So I’m like, all right. So I had decided at that moment that I wanted to start a bucket list.
So I was like, okay, what are all the things I’ve always wanted to do before completely going completely blind? So I was like, let me go skydiving, let me go spolunking, let me go meet with people, meet with celebrities and just do all of the things I’ve always wanted to do before I lose my vision. So I went out and I did it. This is still me doing it. This is still me doing it. And so I say that because to people who say if I ever went blind, I would just die. Well, when I went blind, it made me want to live. And that’s what opened me up into being this person that I am today.
Stephanie Flynt McEben:
That is amazing. I genuinely love that.
Lachi:
We talk about charity model and propping disabled folks up as tools of pity. We talk about medical model, which is really just waiting around for cure, making the cure the hero. We talk about social model, which is a really good place to live in the sense of things are impairing if they’re not accessible. Society is impairing if it’s not inclusive. But honestly, if I have all of the things, like if I have all my tools, if I have all that I need and if folks are inclusive, then I’m still blind, but I’m not impaired. But I like to go a little step further into what is the cultural model.
And so the cultural model is it’s not just a discussion of what society should and shouldn’t do. It’s actually a celebration of what you gain as a person who identifies with their disability or their neurodivergence, the things they need to overcompensate because they’re navigating the world a little differently, leaning into that. So let’s say for instance, deaf culture, sign language, and the fact that folks can have complete discussions outside of what we’re talking about, there is so much deaf pride out in these streets, that is a celebration of culture that comes out of disability.
And for me, let’s say for instance, I have ADHD and it powers my one million and counting ideas. I have diagnosed OCD, which helps me carry out all those one million and counting ideas. I have diagnosed general anxiety disorder, which gives me my empathy and my excitement. And then I am blind, which when I have the tools I need, it gives me drive. It keeps me determined, it keeps me focused, and it gives me my dope ass glam canes. There was a girl and her mom, and she came up to me after a show and she was like, “Oh my God, your music was great.” I was like, thank you. She’s like, “Mommy, can I get one of those canes?” And then her mom was like, “Ugh, well, you have to be blind.” And I’m like, “Yeah, girl, you better want to be me.”
Stephanie Flynt McEben:
Yeah. We drive sticks. Anyway, sorry.
Lachi:
Yes. You know what? I speak softly and I carry a big old stick. Thank you.
Stephanie Flynt McEben:
Yes. Amen to that. Exactly. As somebody who considers themself a lifelong disability advocate, I never really thought about it in the sense of going beyond the social into the cultural. So thank you so, so much. We all learn something new every single day on this podcast, but I’d love to know a little bit more about, obviously you were very, very, very good at talking through these experiences in such a way that they are very relatable and easy to understand and that thing. So I’d love to pick your brain about the intended audience of your book. Who did you write it for? Other blind folks? Did you write it for, was it written for multiple audiences?
Lachi:
Yeah, honestly, I wrote it for the person who is masking. I wrote it for anyone who is tired of… Listen, let me put it like this. Let’s face it, disability is boring, a lot of the time it’s sad and it’s compliancy. We have to go the extra mile to make it fun because the actual truth of it is that the only reason it’s boring, sad, and compliancy is because society has kept it that way through its collective internalized ableism. And so my book is actually a humor book. It’s a pop culture book. It’s a comedy book. In fact, when we were talking to the publisher, it’s like, we should be putting this up against other comedic books, not necessarily disability books because it’s a book. I got so many jokes. I have dad jokes, they’re corny jokes, I have rap bars. I rap in a lot of the book just because I was like, “Hey, this rhymes.” I’m going to say it like a rap. We’re doing the audiobook right now, so I actually get to wrap it, which is really fun.
Stephanie Flynt McEben:
Oh, that is so cool. Oh my gosh.
Lachi:
Which is really, really fun. But really, honestly, what the book is what everything I do is it is using joy, soul, pop culture, jokes, humor, fashion, and just a really good time to celebrate disability, as well as community. So what you’ll find in this book is my story through my story, through historical deep dives, through interviews with some really, really cool popular figures and a really big deep dose of disability joy. And so a lot of folks who have disabilities, they will read this book and they’ll be energized. It’ll be like, “This is really great. I’m glad that I finally get to read a book that talks about disability in a positive way.”
For blind specific folks, they might relate to a few of my stories because I talk about the day I woke up blind, I talk about when I went skydiving blind, I talk about just some of my interesting blind moments. But then I also talk about how I would go to red carpets and not know how to talk to anybody. So I’m in this amazing room with all these celebrities I can’t see and I’m just sitting on the wall. So I talk about some of the hard times too as well. But at the end of the day, really what the book is is an invitation in for somebody who feels a little different, a little awkward, has to mask, and just needed that invite in to talk about disability in a fun, joyful, celebratory way, to recognize that yes, that thing in you that’s different, that thing in you that society has told you you should view as a weakness and hide, you should be proud of.
And I say this to people all the time. I say it in the industry, I say it to all my friends, I say it to anyone who will listen. I say it to my local barista and they come back and they say things like, “Oh my God, I’m so glad you said it that way. It turns out I have a titanium hip and I’ve never told anybody about that.” And that’s the vibe. The vibe is someone who was like, “I really needed this to be said to me this way, and now I am able to step all the way into my disability identity.”
Alden Blevins:
I love, especially what you said about joy. I feel like for me as an autistic person, my experience in the arts is that it is really a space where people who maybe don’t belong in other spaces or don’t feel like they belong in other spaces or are made to feel like they don’t belong in other spaces. I think that a lot of them really do find a safe space in music, in the arts, in theater. And I just wanted to ask, why do you think the music space is such a special one for you and why do you think it’s a place where other people with disabilities seem to flock together as well?
Lachi:
I mean, you hit the nail on the head. Counterculture, I mean, music often rewards counterculture. And then it eventually becomes mainstream and then we got to rebel against that. So music is a place where your soul can speak. And I think a lot of the times with disabilities, especially autism for me, I’m ADHD, OCD, a different neurodivergence situation, but a lot of the issue is communication. We don’t know how to say exactly what we need or whoever we’re talking to just doesn’t know how to hear what we’re saying. And so I think that what music does is it allows a soul to speak to a soul. A lot of the times music does this thing where you’ll be listening to a song and you’ll just be like, “That, that right there. That’s what I it me. That’s the thing I’m feeling.” type deal. Music has the ability to do that.
And so for me, right now, this children’s album that I’m working on, the kids’ album, which is an album that is essentially R&B, pop, electronic, sort of the genres that I dance in for kids centered on disability and neurodivergence. Because what I want to do is be able to say, “Hey, I want you to point at that and say, that’s me.” And I think the easiest and quickest way to point at something and say, “That’s me also.” has been music. And so it’s why it’s been my strongest medium. Again, it’s not my only medium. I’m talking to folks through the book, I’m talking to folks through fashion, et cetera, et cetera.
But again, music has been just the quickest, easiest point A to point B conversation easer, if you will, about disability. Another thing I also love to use is humor and comedy. So I make jokes all the time. They’re all bad. They’re all very not good jokes. I need to probably get a joke writer, but the fact that I’m having such a good time telling the jokes, I think I think is all that really matters. So I think both music and humor are just really, really great spaces for two people to get to relate to something that may be difficult to talk about.
Stephanie Flynt McEben:
Yo, if you need a joke writer, I’m your girl. I actually do a joke every single episode of this podcast.
Michelle Bishop:
Her jokes are not better than yours, Lachi. Don’t hire her.
Stephanie Flynt McEben:
My jokes are pretty bad. They’re worse than dad’s jokes. They’re like granddad jokes.
Alden Blevins:
Yeah. Stephanie is the queen of the jokes on our podcast. She always brings one through. Didn’t know that you were working on a children’s music album, and I think that’s really interesting. I actually used to be a teacher, so children’s music is something that’s near and dear to my heart. So I just wanted to ask, what would you want to tell to younger people with disabilities, younger disabled creatives about claiming space and being able to tell their own stories?
Lachi:
Well, one thing that I heard from someone else, I don’t remember who it was. I think it was-
Michelle Bishop:
Jordan?
Lachi:
Yes, Jordan. He’s the one that said this.
Michelle Bishop:
I love him.
Lachi:
Yeah, he’s so funny. I met him at a… What did I meet him at? The Webby Awards or something. But anyway, no one can ever defeat someone who hasn’t given up. And for some reason that hit me, and I don’t even think he was trying to say it that deep. He was just saying a joke or something. But I took that and it was like, no one can ever defeat someone who hasn’t given up. So at the end of the day, you are really the only one who can end whatever you’re trying to get. Because as long as you are still going for it, it is still still there. It’s like a Schrodinger’s cat. It’s like as long as you’re still running for it, that opportunity is still there for you to have. The opportunity is never lost as long as you’re still going for it.
And people can tell you, people can take your shoulders and tell you to go right. People can take your shoulders and tell you to go left. But until you take your own shoulders and go in the direction that your heart, your soul, your passion, your fire, desires, that is when you truly begin to live. And so I say personally, lean into that. I hear from a lot of younger, especially creators with disabilities. I mentor a lot of folks, tons and tons of folks. It’s one of the things I love to do the most. But what I love to tell folks is you are going to be the best you. And that you is going to include all of the different parts of who you are, but it is especially going to include you leaning in to the things that make you different and unique as unique selling points.
Earlier I talked about how people try so hard to be the “definition of beauty”, definition of success, definition of whatever. Everyone’s trying to be this reference man. Everyone’s trying to be as close as they can to the reference man. And if I’m as close as I can to the reference man, then I’ll be successful or then I’ll get this job or then I’ll get this gig. But the truth of the matter is when we look at all of the people that are doing all of the big things, they’re “eccentric”. They’re “weird”. They did some big different idea that no one was thinking about and everybody fell into their trend.
The further away you are from the reference man, that is when you start to win. That is when you’ll start to see success. That is when you’ll start to feel much better about yourself. That is when you can wake up in the morning, look in the mirror and say, “I am fine.” When you are able to accept all of those different freckles of yourself that are as far away from the reference man as possible, because guess what? There is room outside of the barrel for everyone to win if they are all being their unique self and running their unique purpose. That’s what I would tell to young disabled creators.
Michelle Bishop:
That’s amazing. Almost feel like we should stop there, but I have so many follow-up questions.
Lachi:
Listen, I’m here to drop as many mics as they will let me keep breaking.
Michelle Bishop:
I was wondering how you see the conversation around disability and inclusion and evolving these days. And a lot of our listeners are people with disabilities or people who have other even multiple intersecting identities in which they experience barriers as well. What does allyship look like to you?
Lachi:
This is one of my favorite questions. So yes, we have folks with disabilities and we have folks who want to work with people with disabilities, want to help a friend with a disability, want to make sure they don’t say the wrong thing to a person with a disability, neurodivergence, chronic condition, mental health condition. That’s not an ally. Wanting to help a person with a disability is not an ally. To me, wanting to support someone with a disability, that’s an ally in the very basic definition of allyship. Here’s what I think an ally is. To answer the question, I got to do two things. One, talk about the disability umbrella. So the disability umbrella encompasses so many forms of disability. It is neurodivergence, which is ADHD, dyslexia, OCD. It is mental health conditions like anxiety, depression, bipolar. It is someone who learns a little differently.
It is someone who has explosive situations like anger management. It is someone who has substance abuse disorder, maybe somebody who drinks too much or uses different substances. It is chronic back pain. You know what I’m saying? It is asthma. It is EDS. It’s POTS. It is long COVID. It is different complications that you gain after pregnancy. It is different complications that you gain as you age. It is different complications you gain through menopause. It is temporary. It is breaking your arm and wearing a cast. It is seasonal depression. There is nobody on this earth that is not within the disability umbrella. And I don’t mean that you’re going to grow into it. I don’t mean in the future. I mean right now. Whether you identify as a person with a disability or not, you have disability identity because you have experience in your body disability. And when you figure that out, then you’re an ally. Allyship is seeing yourself through the other person because you can’t look through someone else’s eyes unless you can see yourself in them. And you can’t see yourself in disability until you recognize the disability identity within yourself.
All of a sudden, and I say this and people are like, “What? I say this, but I’ve seen this. I’ve seen it happen. I’ve seen people who did not associate themselves with any form of disability or anything and they’re just like, Oh, them. Oh, I’ll help them. We have a conversation and then we have a follow-up conversation and then we’re drinking and then all of a sudden they’re telling me all their disabilities and then they’re walking a little different when they encounter disability. It’s no longer a them thing. And so that’s what an ally is. People with disabilities are also allies. I am an ally to the deaf community because I recognize though I’m not deaf, I see the having to navigate the world differently in you of myself. So that’s how I define an ally. An ally is someone who understands their own disability identity and can see it in others.
Michelle Bishop:
Don’t mind me over here just taking notes.
Stephanie Flynt McEben:
Literally. Oh my gosh. Lachi, thank you so, so, so much for being with us and taking time. I know that your website, lachimusic.com is one of the places where folks can stay up to date on all of the latest and greatest things that you’re up to. Is there anything else in particular you would like to plug for our listeners?
Lachi:
Like you said, LACHI, L-A-C-H-I M-U-S-I-C. I’m on the internets everywhere. Instagram, Spotify, check out the old music. If you’re a creator, a music creator or professional with a disability, check us out at RAMPD, R-A-M-P-D.org. Or if you want to donate or if you want to partner with us over at RAMPD, please do. If you are a cane user, whether you’re a blind cane user or you use Mobility Cane, check out glamcanes.com, get your canes bejeweled. I Identify as Blind, our book is out on Penguin Random House, imprint called Tiny Reparations by Phoebe Robinson, who is also a comedian. So we’re out here all writing very funny books. So please check it out. And lastly, listen, try to find moments in your day of disability joy. And when you find that moment, take a picture of it or write it down so that you can go back to it and live for those moments. So thank you guys so much for having me on this podcast. It’s really been a blast getting to talk at you about all things I identify as blind.
Alden Blevins:
I love it. I was over here taking notes too because I just found so much of myself in what you were saying and so many things were poignant and empowering. I, as an autistic person, try to be an ally to other parts of the disability community myself. And that’s something where I’m always trying to put myself in the shoes of another person and what they might experience. So I think that’s really powerful. We were so grateful to be able to connect and learn more about you, Lachi.
Lachi:
Yes, yes, yes. So honored to be here, guys.
Michelle Bishop:
Before you head out, Lachi, do you want to hear one of Stephanie’s grandpa jokes?
Lachi:
I was going to say, I was like, “Let’s hear one of these granddad jokes.” Let me see.
Stephanie Flynt McEben:
Okay. This might be-
Michelle Bishop:
Okay, do it.
Stephanie Flynt McEben:
… a granddad joke. Okay. Where do spiders like to get their information?
Lachi:
The web?
Michelle Bishop:
That would be something to do with web.
Stephanie Flynt McEben:
But what kind of web?
Lachi:
Wow. Really? You are fired from being my comedy writer. You are fired to be my comedy writer. I was rooting for you too. I was like, let’s just… Please.
Stephanie Flynt McEben:
I wouldn’t even get to the punchline yet.
Michelle Bishop:
Worldwide web?
Stephanie Flynt McEben:
It is the worldwide web.
Michelle Bishop:
Oh.
Stephanie Flynt McEben:
It’s fine. It’s fine. My wife warned me not to tell that joke this month and I didn’t lose it.
Michelle Bishop:
Oh my gosh. I’m so glad you stuck around for that part.
Lachi:
As I live and breathe. Thank you guys so, so much. This has been so much fun and I will see who else I can tell that joke to. And go ahead and just to help you out, Stephanie, I’ll go ahead and embarrass myself by telling that joke to others.
Stephanie Flynt McEben:
Not my best work, but that is allyship. Yes.
Michelle Bishop:
Oh my gosh, Lachi, thank you so much. And everyone, please lachimusic.com. Check it out. Listen to the music, read the book.
Alden Blevins:
Speaking of the worldwide web, this has been National Disability Radio. We celebrate stories, leadership, and talent of people with disabilities. If you enjoyed this episode, be sure to subscribe, share, and continue the conversation with us on that worldwide web at ndrn.org or anywhere you get your favorite podcasts. Thanks for listening and until next time.
Stephanie Flynt McEben:
Bye.
On this episode of National Disability Radio, we sit down with award-winning recording artist, advocate, and author Lachi for a powerful conversation about disability pride, music, and unmasking.
Lachi shares her journey, from navigating the music industry as a blind artist, to founding RAMPD, a coalition amplifying disability culture across the industry. We talk about what it means to say “I identify as blind,” move beyond the medical and social models of disability into a cultural model rooted in identity and joy, and remind listeners that no one can defeat someone who hasn’t given up.
From glam canes to Grammy stages, this episode is about claiming space, rejecting internalized ableism, and turning perceived flaws into flexes.
Transcript:
Alden Blevins:
It’s Lachi? I feel very-
Lachi:
Lachi like Versace.
Alden Blevins:
Lachi like… Oh, I love that.
Michelle Bishop:
That is the best way to explain it.
Lachi:
I mean, but you know what I’m saying? Come on.
Alden Blevins:
Well, we’re really excited about having you today because we’re all music lovers in this group here.
Michelle Bishop:
Yes.
Alden Blevins:
We talk about music all the time.
Michelle Bishop:
So much.
Lachi:
Good, good, good, good, good, good, good. I’m in the right place.
Michelle Bishop:
Hi everyone. Welcome back to National Disability Radio, the official podcast of the National Disability Rights Network. I am Michelle Bishop, 1/3 of your podcast hosting team.
Stephanie Flynt McEben:
And I’m Stephanie Flynt McEben, public policy analyst here at NDRN.
Alden Blevins:
I am Alden. I am a communication specialist at NDRN and I am so excited today, like I mentioned, we’re all lovers of music, so we got a guest that I’m really excited about. Lachi is an award-winning recording artist and a recording Academy Grammy’s national trustee. She’s also a disability advocate who’s been breaking barriers in the music industry and beyond. She’s the founder of RAMPD, which by the way, is such a fun play name. I really love that. And the author of the upcoming book, I Identify as Blind. So without further ado, Michelle, you’ve got some questions to kick us off, I think.
Michelle Bishop:
Yes. We’re so excited to have you with us. As Alden said, we are. We’re huge music lovers. I’m pretty sure we spend most of our meetings where we allegedly plan this podcast just talking about music. So you’re absolutely in the right place today, but to get us started, I mean, you’ve been open about the fact, and I’m just really interested in this as a disability rights podcast. You’ve been really open about the fact that it took you some time to really embrace your identity as a blind and disabled woman, especially in the industry that you’re in that often really rewards conformity. Can you tell us a little bit more about that journey for you, both as an artist and as someone navigating just the world with a disability?
Lachi:
Okay. Yeah, for sure. Hey, everybody. Lachi here, Lachi like Versace. I am a Black woman with cornrows, chilling here in New York in my studio. I also identify as blind, I identify as neurodivergent, and I identify as an Aries. So do with that what you will.
Michelle Bishop:
All the important points right there.
Lachi:
All the important points like name, age, sign. Thank you. Okay. Yeah, but I’m really glad to be here. And thank you for that question, and thank you for having me. So music has always been a very integral part of my life of growing up. Where other babies would kick in the womb, when she was pregnant with me, I was playing the piano in the womb. I don’t know how she got a piano in there, but she’s not a liar, so I’m going to take her word for it. When I was super-duper young, I didn’t really have a lot of friends, especially because of the fact that I had differences and this and that. And so I would take to music to, I guess, understand the world better and have the world understand me better. I just knew how to express myself through song and it just said the things I needed to say. It was the prayer I needed.
And because of music, I started to find confidence in how to speak and how to behave and how to act. And as I got older, when I was growing up, disability was not necessarily a thing people talked about a lot in schools and teachers didn’t know what to do. My parents didn’t really know what to do. And so I would always just turn to music. It’s actually right now I’m working on a children’s album because I think that kids need to hear music that has to do with disability and neurodivergence, as well as their parents as they grow up. When I got into college, I started wanting to do music, but I studied business and finance because when I told my parents I wanted to do music, they were like, “That’s not how you spell doctor.” because they are Nigerian immigrants and everybody else in my family went to either med school and blah, blah, blah. And I was like, “No, I want to do music.” But I did get a day job after school, after college, and didn’t love it because this girl is not going to exist behind a desk.
So I ended up going to South by Southwest and I got signed actually from playing the guitar at a hole in the wall spot that nobody was at, except for this A&R apparently. So we got signed to an imprint under EMI, which was a major label back then, and we started touring and music then became my life. Now today, why wouldn’t I pay my respects back to music? I mean, it’s because of music that I was able to really lean into who I am, my disability, my confidence, et cetera. So because of that, because of how much music has given to me in my life, I’m here using music to give back to other people with disabilities. Now, your question was essentially, how do you sit here and try to bring about change for disability in an industry that is not only about conformity, but also about like, “Hey, pick me to exploit.” is essentially what the music industry is. You’re raising your hand to be exploited and that’s what kind of authenticity is that?
But at the end of the day, music is some of the truest forms of storytelling. And I think to myself, just the way that hip hop has amplified Black culture and the way that country music has amplified rural culture and the way that different global musics have represented different global cultures. I want to use music to amplify disability culture. I want to use music to amplify disability stories and feelings that are difficult to put words to, that are words of the soul, which is essentially what music is. And so I started going to studios and realizing things weren’t as accessible as they should be. I started speaking with organizations and realizing things weren’t as inclusive as they should be. And the response I kept getting was like, “Oh, well, there’s nobody with a disability in the music industry, so why would we make these measures?”
And so I have made it my life’s goal through RAMPD, which by the way, the best thing we ever accomplished was our acronym, not us working with the Grammys to get sign language on the red carpet, not us getting these partnerships with title, Live Nation, Spotify. I mean, we’ve done so much, not just for artists, but also for professionals. And we’ve started to realize something really interesting with the work we’ve done with RAMPD. We are getting people joining our membership who are director level folks, who are label owners, who are like the big wigs that write the checks, and they’re like, “I’m neurodivergent. I’m actually hard of hearing. I have a TBI.” And so when I originally set out, they said, “We don’t do disability inclusion because nobody’s disabled.” That was three years ago. Now I’m like, not only are there neurodivergent and disabled music professionals out here, but we all are. So really to conclude, it’s just that everyone is navigating trying to make it out in this world, but everyone’s masking.
Everyone feels that they have to change some part of themselves to be as close as they can to what success looks like, be as close as they can to what “beauty” looks like, what winning looks like. But really all it is internalized ableism. And I say, as soon as we drop that internalized ableism and we really start to sit in who we truly are and we start to recognize our perceived flaws as flexes, that’s when we truly start to win. And so that’s what we’re finding out with RAMPD, that people are like, “You know what? I’m tired of navigating this difficult industry with the added layer of having to mask.” And so that’s why I do what I do.
Michelle Bishop:
Yes. And honestly, as ridiculous as it sounds that they say to you, “Oh, there aren’t any people with disabilities.” When I tell you, we see that in everything that we do. I do voting work at NDRN and we’ll have elections officials tell us, “This polling place isn’t accessible, but there aren’t any people with disabilities that vote here.” And it’s like, “What? You realize we’re everywhere and we do all sorts of things.” Maybe the reason they think there’s no people with disabilities here is because they’re stuck outside and they can’t get in because you didn’t make it accessible, just a thought. But I mean, it sounds like coming up against all that is really, correct me if I’m wrong, helped you to develop that identity and that disability pride in the industry. When did you first say, “I identify as blind.” and what did that mean for you?
Lachi:
Well, so when I first came into really doing the disability thing, really leaning in, I wanted to find out more influencers or thought leaders and such with disabilities. I didn’t really know that many people. This is pre COVID, 2018, 2019, that kind of thing. And so I came across an influencer, her name is Molly Burke, and we’re great friends now, but I didn’t know her back then. I had just seen her tagline and it had said, “I’m Molly Burke and I’m a YouTuber who happens to be blind.” And for some reason I was like, “I don’t know if I love the happens to be blind thing.” I was like, “Well, I’m proud of being blind. Blindness is part of my identity. I don’t just happen to be a woman. I don’t just happen to be a Nigerian. I don’t just happen to be all of the things I am.” And so I would go to… I was touring… We’re always touring and every time I tour and do a show, I do a comedic open where I just introduce myself, I do a quick self-description, et cetera.
And in my self-description, I would say, and I don’t just happen to be blind. My blindness is part of my identity, has given me all of the opportunities I have, and it’s really made me a deeper blah, blah, blah. It was just too long. So I had punched it up to be, “My name is Lachi like Versace. She, her, I’m a Black woman with cornrows and I identify as blind.” And the interesting thing about that is people took onto it. They were like, “Oh, that’s cool, nice and punchy.” But whenever I would say it in front of a large crowd or like I’ve said it on interviews or during commercials, I would get this weird, I don’t know, pushback of like, you can’t identify as blind. Blindness is an identity. It’s a medical condition. Or they’ll be like, “Do you read braille or not?”
Or they’ll be like, “We don’t want people to think trans blindness is a thing where you just have a blind identity.” And then you can be like, “Well, I’m blind today, so that’s my identity.” And I thought that was really fun. I was like, “Look, everybody’s upset. They’re talking about blindness though.” So I really leaned all the way into it. And I have to say, I am super proud of my disability identity. Was it music that brought me there? I think in a sense and in a way, like today I have a few songs, you guys are music lovers, I have a few songs out that really talk about my disability pride. I think that a lot of the times as we navigate the world, masking our disability, masking our chronic condition, our difference or whatever, we end up overcompensating. We end up building up this really, really thick problem solving muscle or this really, really thick how to get around things muscle and we overcompensate.
When we’re finally accommodated, when we finally get to a place where we’re accommodated or we have the tools we need, we’re coming in like bulk as hell. We’re coming in with problem solving muscles. We’re coming in with all of these things that we had to build up because of navigating the world differently, because of every day working through this very difficult maze that is living a life unaccommodated, then when we finally are accommodated, then we are killing it and crushing it. And how could you not be proud of that? How can that not give you a sense of pride? So the songs that I would love for you guys to check out that are mine is I have a song called Life on Hard, which has gone viral several times on Instagram. I’m known as an Instagram rapper, which is like, what? Hello, I do disability advocacy. Look at that stuff.
But anyway, so I have a song called Life on Hard, which is essentially about just winning the game of life, playing it on the hardest setting out here while people are still trying to consult the manual. I have another song called Professional, which is oftentimes when I walk on the stage, people see the cane and they’re like, “Aw, she’s going to do a song for us. Is this from Make a Wish Foundation?” And then I bust out these raps or I hop on the piano and I go ape on this piano and then they’re like, “Oh, snap. What? Okay.” And I’m like, “Bro, I’m a professional artist. I’m not object for pity to make you feel good because you felt weird on a Monday and you didn’t feel like getting up for work, but it’s like, she could do it. So can I.”
I’m like, “No, I can do it. You most likely probably just can’t.” So that’s what that song’s about. And then there’s The Bag, and The Bag is just essentially like, I’ve been told no so much like, “No, you can’t. No, you’re not good enough. No, we don’t want you.” And I’m like, “You know what? Yes, I am good enough and I deserve everything. So I’m going to throw everything I deserve in the bag, which is everything.” I don’t know. I would not be the person I am if I didn’t love all parts of myself. And that includes my disabilities, that includes my neurodivergences and all of the other wacky, weird body jazz that I bring with me everywhere I go.
Michelle Bishop:
Lachi, can we maybe, do you and I just FaceTime each other every morning and hype each other up?
Stephanie Flynt McEben:
I was literally about to say the same thing. I would like in on a true call.
Michelle Bishop:
I don’t know if you know. Actually, I want to say quickly, I know some of those songs actually from social media, but they’re real. They’re so real. So people haven’t heard music, go check it out. I don’t know if you know one of our co-hosts, Stephanie is blind. You’re speaking directly to her soul right now.
Stephanie Flynt McEben:
I literally just texted them in our podcast group text and I was like, she’s totally speaking to my soul RN, but of course I don’t want to interrupt anything.
Michelle Bishop:
No, I know you’re dying to talk to her about the book, Stephanie, and take it away.
Stephanie Flynt McEben:
Yeah, no, absolutely, for sure. And as somebody who is blind and who also identifies as a blind person and definitely does not identify with the medical model of disability, clearly gotten to more of a social model. But yeah, in terms of going through that journey of accepting all of who you are and everything about yourself, for me, I mean, it took a minute, especially when you’re talking about your experiences as a child and I totally feel that. I was that girl playing the harmonica on the jungle gym by herself. Anyway, this is about you. This is not about me, but I’m just saying that I totally relate to you on a spiritual level. And given that, I would love to know, were there any particular moments when it came to writing the book that were particularly hard or healing? Because I mean, I think that we all know that it’s not always a linear journey. Some days are going to be harder than others. And so would love to get your perspective on that. And I think that our listeners would be interested.
Lachi:
Yeah, absolutely. The journey for me has been one of constantly unwrapping this amazing gift. I always try to use that as the visual, if you will, of you have this big present and you get to unwrap it and then you just keep getting something cooler inside and then you get to unwrap that and you get something cooler inside and you just keep unwrapping this beautiful gift that is yourself. But you don’t realize that when you first get the box, the amazing stuff that’s going on inside, and it takes time to get to it. So a lot of times growing up, I would kick myself in the butt of, I wish I had come to this when I was so much younger. I wish there were people out there when I was younger, role models that I could look up to when I was eight years old and pointing on the TV and saying like, “Okay, well, I mean, I understand that Ray Charles existed, but that’s not going to…”
Stephanie Flynt McEben:
Stevie Wonder is here, Ray Charles is here, but we need more of us. Hello.
Lachi:
We need more of us. Hello. Exactly. And so this time and place where I am right now is where I needed to be for this to work. So I can’t really kick myself in the butt of like, “I wish I had this. I wish I knew this so much earlier. I would’ve been so much further.” That kind of thing. You have to be where you got to be where you need to be. Even right now, this conversation we’re having right now is going to have been necessary for the next thing that is happening in our lives. And just the other day, I was hanging out with Queen Herby, who’s been one of my favorite more modern rappers. I just did a thing with Apl.de.ap. I have done some stuff with Black Caviar. Folks that I’ve looked up to, I’m having the opportunity to Snoop Dogg.
I’m having the opportunity to work with these days because of the fact that I am here at the right time now. So when I was writing my book, we were peeling back all the layers. I’m a generally very positive and energetic, social butterfly type of person today. But it’s interesting, I wasn’t always this person and I had to unpack all the layers to get there. One of the biggest things that happens to me, so I’ve always been low vision. So I was born with relatively low vision and it stayed the same throughout my teens and early 20s. But one day I woke up and my sight was just gone. Boom. So the interesting thing is anybody listening would be like, “Oh my God, if I woke up and my sight was gone, I would just die or I would not know what to do. My life would be over.”
Stephanie Flynt McEben:
Yep. Heard that a million times. Yes.
Lachi:
But for me, it was weird because I was already low vision, so I was going from level one to the underwater level or whatever. So it wasn’t like that life changing of a thing. I was already using screen readers or Zoom text. I was already doing stuff of that nature. So I wake up blind and I’m just like, “Okay, I guess this is it. This is the day that they told me was coming.” What had ended up happening was my corneas had erupted. And so I went to the doctor and he was like, “You’re going to become completely blind. You’re going to go from this much worse vision than you’ve had to complete blindness over the course of time.” So here you go, here’s a coupon. Bye.” or whatever. So I’m like, all right. So I had decided at that moment that I wanted to start a bucket list.
So I was like, okay, what are all the things I’ve always wanted to do before completely going completely blind? So I was like, let me go skydiving, let me go spolunking, let me go meet with people, meet with celebrities and just do all of the things I’ve always wanted to do before I lose my vision. So I went out and I did it. This is still me doing it. This is still me doing it. And so I say that because to people who say if I ever went blind, I would just die. Well, when I went blind, it made me want to live. And that’s what opened me up into being this person that I am today.
Stephanie Flynt McEben:
That is amazing. I genuinely love that.
Lachi:
We talk about charity model and propping disabled folks up as tools of pity. We talk about medical model, which is really just waiting around for cure, making the cure the hero. We talk about social model, which is a really good place to live in the sense of things are impairing if they’re not accessible. Society is impairing if it’s not inclusive. But honestly, if I have all of the things, like if I have all my tools, if I have all that I need and if folks are inclusive, then I’m still blind, but I’m not impaired. But I like to go a little step further into what is the cultural model.
And so the cultural model is it’s not just a discussion of what society should and shouldn’t do. It’s actually a celebration of what you gain as a person who identifies with their disability or their neurodivergence, the things they need to overcompensate because they’re navigating the world a little differently, leaning into that. So let’s say for instance, deaf culture, sign language, and the fact that folks can have complete discussions outside of what we’re talking about, there is so much deaf pride out in these streets, that is a celebration of culture that comes out of disability.
And for me, let’s say for instance, I have ADHD and it powers my one million and counting ideas. I have diagnosed OCD, which helps me carry out all those one million and counting ideas. I have diagnosed general anxiety disorder, which gives me my empathy and my excitement. And then I am blind, which when I have the tools I need, it gives me drive. It keeps me determined, it keeps me focused, and it gives me my dope ass glam canes. There was a girl and her mom, and she came up to me after a show and she was like, “Oh my God, your music was great.” I was like, thank you. She’s like, “Mommy, can I get one of those canes?” And then her mom was like, “Ugh, well, you have to be blind.” And I’m like, “Yeah, girl, you better want to be me.”
Stephanie Flynt McEben:
Yeah. We drive sticks. Anyway, sorry.
Lachi:
Yes. You know what? I speak softly and I carry a big old stick. Thank you.
Stephanie Flynt McEben:
Yes. Amen to that. Exactly. As somebody who considers themself a lifelong disability advocate, I never really thought about it in the sense of going beyond the social into the cultural. So thank you so, so much. We all learn something new every single day on this podcast, but I’d love to know a little bit more about, obviously you were very, very, very good at talking through these experiences in such a way that they are very relatable and easy to understand and that thing. So I’d love to pick your brain about the intended audience of your book. Who did you write it for? Other blind folks? Did you write it for, was it written for multiple audiences?
Lachi:
Yeah, honestly, I wrote it for the person who is masking. I wrote it for anyone who is tired of… Listen, let me put it like this. Let’s face it, disability is boring, a lot of the time it’s sad and it’s compliancy. We have to go the extra mile to make it fun because the actual truth of it is that the only reason it’s boring, sad, and compliancy is because society has kept it that way through its collective internalized ableism. And so my book is actually a humor book. It’s a pop culture book. It’s a comedy book. In fact, when we were talking to the publisher, it’s like, we should be putting this up against other comedic books, not necessarily disability books because it’s a book. I got so many jokes. I have dad jokes, they’re corny jokes, I have rap bars. I rap in a lot of the book just because I was like, “Hey, this rhymes.” I’m going to say it like a rap. We’re doing the audiobook right now, so I actually get to wrap it, which is really fun.
Stephanie Flynt McEben:
Oh, that is so cool. Oh my gosh.
Lachi:
Which is really, really fun. But really, honestly, what the book is what everything I do is it is using joy, soul, pop culture, jokes, humor, fashion, and just a really good time to celebrate disability, as well as community. So what you’ll find in this book is my story through my story, through historical deep dives, through interviews with some really, really cool popular figures and a really big deep dose of disability joy. And so a lot of folks who have disabilities, they will read this book and they’ll be energized. It’ll be like, “This is really great. I’m glad that I finally get to read a book that talks about disability in a positive way.”
For blind specific folks, they might relate to a few of my stories because I talk about the day I woke up blind, I talk about when I went skydiving blind, I talk about just some of my interesting blind moments. But then I also talk about how I would go to red carpets and not know how to talk to anybody. So I’m in this amazing room with all these celebrities I can’t see and I’m just sitting on the wall. So I talk about some of the hard times too as well. But at the end of the day, really what the book is is an invitation in for somebody who feels a little different, a little awkward, has to mask, and just needed that invite in to talk about disability in a fun, joyful, celebratory way, to recognize that yes, that thing in you that’s different, that thing in you that society has told you you should view as a weakness and hide, you should be proud of.
And I say this to people all the time. I say it in the industry, I say it to all my friends, I say it to anyone who will listen. I say it to my local barista and they come back and they say things like, “Oh my God, I’m so glad you said it that way. It turns out I have a titanium hip and I’ve never told anybody about that.” And that’s the vibe. The vibe is someone who was like, “I really needed this to be said to me this way, and now I am able to step all the way into my disability identity.”
Alden Blevins:
I love, especially what you said about joy. I feel like for me as an autistic person, my experience in the arts is that it is really a space where people who maybe don’t belong in other spaces or don’t feel like they belong in other spaces or are made to feel like they don’t belong in other spaces. I think that a lot of them really do find a safe space in music, in the arts, in theater. And I just wanted to ask, why do you think the music space is such a special one for you and why do you think it’s a place where other people with disabilities seem to flock together as well?
Lachi:
I mean, you hit the nail on the head. Counterculture, I mean, music often rewards counterculture. And then it eventually becomes mainstream and then we got to rebel against that. So music is a place where your soul can speak. And I think a lot of the times with disabilities, especially autism for me, I’m ADHD, OCD, a different neurodivergence situation, but a lot of the issue is communication. We don’t know how to say exactly what we need or whoever we’re talking to just doesn’t know how to hear what we’re saying. And so I think that what music does is it allows a soul to speak to a soul. A lot of the times music does this thing where you’ll be listening to a song and you’ll just be like, “That, that right there. That’s what I it me. That’s the thing I’m feeling.” type deal. Music has the ability to do that.
And so for me, right now, this children’s album that I’m working on, the kids’ album, which is an album that is essentially R&B, pop, electronic, sort of the genres that I dance in for kids centered on disability and neurodivergence. Because what I want to do is be able to say, “Hey, I want you to point at that and say, that’s me.” And I think the easiest and quickest way to point at something and say, “That’s me also.” has been music. And so it’s why it’s been my strongest medium. Again, it’s not my only medium. I’m talking to folks through the book, I’m talking to folks through fashion, et cetera, et cetera.
But again, music has been just the quickest, easiest point A to point B conversation easer, if you will, about disability. Another thing I also love to use is humor and comedy. So I make jokes all the time. They’re all bad. They’re all very not good jokes. I need to probably get a joke writer, but the fact that I’m having such a good time telling the jokes, I think I think is all that really matters. So I think both music and humor are just really, really great spaces for two people to get to relate to something that may be difficult to talk about.
Stephanie Flynt McEben:
Yo, if you need a joke writer, I’m your girl. I actually do a joke every single episode of this podcast.
Michelle Bishop:
Her jokes are not better than yours, Lachi. Don’t hire her.
Stephanie Flynt McEben:
My jokes are pretty bad. They’re worse than dad’s jokes. They’re like granddad jokes.
Alden Blevins:
Yeah. Stephanie is the queen of the jokes on our podcast. She always brings one through. Didn’t know that you were working on a children’s music album, and I think that’s really interesting. I actually used to be a teacher, so children’s music is something that’s near and dear to my heart. So I just wanted to ask, what would you want to tell to younger people with disabilities, younger disabled creatives about claiming space and being able to tell their own stories?
Lachi:
Well, one thing that I heard from someone else, I don’t remember who it was. I think it was-
Michelle Bishop:
Jordan?
Lachi:
Yes, Jordan. He’s the one that said this.
Michelle Bishop:
I love him.
Lachi:
Yeah, he’s so funny. I met him at a… What did I meet him at? The Webby Awards or something. But anyway, no one can ever defeat someone who hasn’t given up. And for some reason that hit me, and I don’t even think he was trying to say it that deep. He was just saying a joke or something. But I took that and it was like, no one can ever defeat someone who hasn’t given up. So at the end of the day, you are really the only one who can end whatever you’re trying to get. Because as long as you are still going for it, it is still still there. It’s like a Schrodinger’s cat. It’s like as long as you’re still running for it, that opportunity is still there for you to have. The opportunity is never lost as long as you’re still going for it.
And people can tell you, people can take your shoulders and tell you to go right. People can take your shoulders and tell you to go left. But until you take your own shoulders and go in the direction that your heart, your soul, your passion, your fire, desires, that is when you truly begin to live. And so I say personally, lean into that. I hear from a lot of younger, especially creators with disabilities. I mentor a lot of folks, tons and tons of folks. It’s one of the things I love to do the most. But what I love to tell folks is you are going to be the best you. And that you is going to include all of the different parts of who you are, but it is especially going to include you leaning in to the things that make you different and unique as unique selling points.
Earlier I talked about how people try so hard to be the “definition of beauty”, definition of success, definition of whatever. Everyone’s trying to be this reference man. Everyone’s trying to be as close as they can to the reference man. And if I’m as close as I can to the reference man, then I’ll be successful or then I’ll get this job or then I’ll get this gig. But the truth of the matter is when we look at all of the people that are doing all of the big things, they’re “eccentric”. They’re “weird”. They did some big different idea that no one was thinking about and everybody fell into their trend.
The further away you are from the reference man, that is when you start to win. That is when you’ll start to see success. That is when you’ll start to feel much better about yourself. That is when you can wake up in the morning, look in the mirror and say, “I am fine.” When you are able to accept all of those different freckles of yourself that are as far away from the reference man as possible, because guess what? There is room outside of the barrel for everyone to win if they are all being their unique self and running their unique purpose. That’s what I would tell to young disabled creators.
Michelle Bishop:
That’s amazing. Almost feel like we should stop there, but I have so many follow-up questions.
Lachi:
Listen, I’m here to drop as many mics as they will let me keep breaking.
Michelle Bishop:
I was wondering how you see the conversation around disability and inclusion and evolving these days. And a lot of our listeners are people with disabilities or people who have other even multiple intersecting identities in which they experience barriers as well. What does allyship look like to you?
Lachi:
This is one of my favorite questions. So yes, we have folks with disabilities and we have folks who want to work with people with disabilities, want to help a friend with a disability, want to make sure they don’t say the wrong thing to a person with a disability, neurodivergence, chronic condition, mental health condition. That’s not an ally. Wanting to help a person with a disability is not an ally. To me, wanting to support someone with a disability, that’s an ally in the very basic definition of allyship. Here’s what I think an ally is. To answer the question, I got to do two things. One, talk about the disability umbrella. So the disability umbrella encompasses so many forms of disability. It is neurodivergence, which is ADHD, dyslexia, OCD. It is mental health conditions like anxiety, depression, bipolar. It is someone who learns a little differently.
It is someone who has explosive situations like anger management. It is someone who has substance abuse disorder, maybe somebody who drinks too much or uses different substances. It is chronic back pain. You know what I’m saying? It is asthma. It is EDS. It’s POTS. It is long COVID. It is different complications that you gain after pregnancy. It is different complications that you gain as you age. It is different complications you gain through menopause. It is temporary. It is breaking your arm and wearing a cast. It is seasonal depression. There is nobody on this earth that is not within the disability umbrella. And I don’t mean that you’re going to grow into it. I don’t mean in the future. I mean right now. Whether you identify as a person with a disability or not, you have disability identity because you have experience in your body disability. And when you figure that out, then you’re an ally. Allyship is seeing yourself through the other person because you can’t look through someone else’s eyes unless you can see yourself in them. And you can’t see yourself in disability until you recognize the disability identity within yourself.
All of a sudden, and I say this and people are like, “What? I say this, but I’ve seen this. I’ve seen it happen. I’ve seen people who did not associate themselves with any form of disability or anything and they’re just like, Oh, them. Oh, I’ll help them. We have a conversation and then we have a follow-up conversation and then we’re drinking and then all of a sudden they’re telling me all their disabilities and then they’re walking a little different when they encounter disability. It’s no longer a them thing. And so that’s what an ally is. People with disabilities are also allies. I am an ally to the deaf community because I recognize though I’m not deaf, I see the having to navigate the world differently in you of myself. So that’s how I define an ally. An ally is someone who understands their own disability identity and can see it in others.
Michelle Bishop:
Don’t mind me over here just taking notes.
Stephanie Flynt McEben:
Literally. Oh my gosh. Lachi, thank you so, so, so much for being with us and taking time. I know that your website, lachimusic.com is one of the places where folks can stay up to date on all of the latest and greatest things that you’re up to. Is there anything else in particular you would like to plug for our listeners?
Lachi:
Like you said, LACHI, L-A-C-H-I M-U-S-I-C. I’m on the internets everywhere. Instagram, Spotify, check out the old music. If you’re a creator, a music creator or professional with a disability, check us out at RAMPD, R-A-M-P-D.org. Or if you want to donate or if you want to partner with us over at RAMPD, please do. If you are a cane user, whether you’re a blind cane user or you use Mobility Cane, check out glamcanes.com, get your canes bejeweled. I Identify as Blind, our book is out on Penguin Random House, imprint called Tiny Reparations by Phoebe Robinson, who is also a comedian. So we’re out here all writing very funny books. So please check it out. And lastly, listen, try to find moments in your day of disability joy. And when you find that moment, take a picture of it or write it down so that you can go back to it and live for those moments. So thank you guys so much for having me on this podcast. It’s really been a blast getting to talk at you about all things I identify as blind.
Alden Blevins:
I love it. I was over here taking notes too because I just found so much of myself in what you were saying and so many things were poignant and empowering. I, as an autistic person, try to be an ally to other parts of the disability community myself. And that’s something where I’m always trying to put myself in the shoes of another person and what they might experience. So I think that’s really powerful. We were so grateful to be able to connect and learn more about you, Lachi.
Lachi:
Yes, yes, yes. So honored to be here, guys.
Michelle Bishop:
Before you head out, Lachi, do you want to hear one of Stephanie’s grandpa jokes?
Lachi:
I was going to say, I was like, “Let’s hear one of these granddad jokes.” Let me see.
Stephanie Flynt McEben:
Okay. This might be-
Michelle Bishop:
Okay, do it.
Stephanie Flynt McEben:
… a granddad joke. Okay. Where do spiders like to get their information?
Lachi:
The web?
Michelle Bishop:
That would be something to do with web.
Stephanie Flynt McEben:
But what kind of web?
Lachi:
Wow. Really? You are fired from being my comedy writer. You are fired to be my comedy writer. I was rooting for you too. I was like, let’s just… Please.
Stephanie Flynt McEben:
I wouldn’t even get to the punchline yet.
Michelle Bishop:
Worldwide web?
Stephanie Flynt McEben:
It is the worldwide web.
Michelle Bishop:
Oh.
Stephanie Flynt McEben:
It’s fine. It’s fine. My wife warned me not to tell that joke this month and I didn’t lose it.
Michelle Bishop:
Oh my gosh. I’m so glad you stuck around for that part.
Lachi:
As I live and breathe. Thank you guys so, so much. This has been so much fun and I will see who else I can tell that joke to. And go ahead and just to help you out, Stephanie, I’ll go ahead and embarrass myself by telling that joke to others.
Stephanie Flynt McEben:
Not my best work, but that is allyship. Yes.
Michelle Bishop:
Oh my gosh, Lachi, thank you so much. And everyone, please lachimusic.com. Check it out. Listen to the music, read the book.
Alden Blevins:
Speaking of the worldwide web, this has been National Disability Radio. We celebrate stories, leadership, and talent of people with disabilities. If you enjoyed this episode, be sure to subscribe, share, and continue the conversation with us on that worldwide web at ndrn.org or anywhere you get your favorite podcasts. Thanks for listening and until next time.
Stephanie Flynt McEben:
Bye.
Alden Blevins, the newest host of National Disability Radio, has a personal journey with autism and ADHD that has shaped her perspective on disability rights and advocacy. Alden was misdiagnosed with anxiety and depression as a child, and did not receive the correct diagnosis of autism and ADHD until her late 20s. Alden describes her experience navigating the workplace and healthcare systems as an autistic individual, emphasizing the challenges of “passing” as neurotypical and the importance of self-accommodating.
We also discuss the evolving public perception and representation of autism, noting that while awareness has increased, the diversity of the autistic experience is often overlooked. When it comes to policy and advocacy, Alden highlights the need for greater autistic representation and input, as the perspectives of those with high support needs or who use augmentative communication are often left out of importangt onversations
To recharge and find joy, the PodSquad turns to their interests, particularly music and pop culture, which play an important role in ever important their self-advocate self-care regime.
To view or download the full transcript, click here.
Michelle Bishop:
How could we not talk about Taylor getting engaged and dropping a new album?
Stephanie Flynt McEben:
Yes. Oh my gosh.
Michelle Bishop:
Taylor, she understood the assignment and she was like, “The world needs me to bring them joy right now.”
Stephanie Flynt McEben:
Yes.
Alden Blevins:
Oh, absolutely. I’ve been totally enjoying some good escapism by entering into the Taylor verse, and that’s been helpful for my mental health as of late, so.
Michelle Bishop:
Maybe we should do our podcast.
Stephanie Flynt McEben:
Welcome to National Disability Radio.
Alden Blevins:
Let’s go ahead and do that. So I’m the newbie here in the mix today.
Stephanie Flynt McEben:
Yay.
Alden Blevins:
Yes. But I will welcome everybody to National Disability Radio and introduce myself and say that I am Alden Blevins. I am a new addition to the NDRN team. I started last year around November. Before that, I happened to work at the Virginia Protection and Advocacy organization, disAbility Law Center of Virginia for two years. So I have learned a lot from the PNAs in the disability community, and I’m super stoked to be here today.
Michelle Bishop:
Love it. Welcome.
Alden Blevins:
Yeah.
Michelle Bishop:
Stephanie, were you going to introduce yourself?
Stephanie Flynt McEben:
I was just going to say, Alden, we are super excited to have you as a producer and host. So yeah, we are super excited to have you with us on our pod squad team. But yeah, I’m Stephanie Flynt McEben and I am NDRN’s public policy analyst and I guess it’s one third now, one third of your podcast hosts.
Michelle Bishop:
One third, one third. I’m Michelle Bishop. I’m the manager for voter access and engagement, and I usually have to introduce myself first every single episode, so looking-
Alden Blevins:
Oh, wow. I didn’t mean to steal your thunder. I just wanted us to get into the mix.
Michelle Bishop:
And I know you’ve got hella professional experience, but also one of the things we highlight on National Disability Radio is also the lived experience of having a disability and why that is also as important and as valid and useful as the professional experience and data and that sort of thing.
Alden Blevins:
Absolutely. So I have my own experience with disabilities. I identify, as the kids say, AuDHD, meaning I both have autism and ADHD, and that has shaped so much about how I moved through the world. Other than that, some more lived experience I have is that I started my career out working in public education, which just happened to teach me a lot about the systems and the barriers that everyday people face. And in addition to my own lived experience with disability, my mom is also a power chair user. Sometimes she uses a walker. She uses various mobility aids. She’s had a disability for most of my life growing up, so while I bring my own perspective, I’ve also got a lot of experience with a different type of disability through my experiences growing up with my mom.
Michelle Bishop:
I’m sorry, did you call it AuDHD? I’ve never heard that before. That’s amazing.
Alden Blevins:
Yes. AuDHD. A-U-D-H-D.
Michelle Bishop:
Yes. I love it, I love it. We’re already learning new things. This episode is about you as our new pro host. So back us all the way up. Let’s let our listeners get to know you a little bit. Can you talk about your journey to joining NDRN?
Alden Blevins:
Yeah, absolutely. So like I mentioned, I did start out working in public education and from there I moved into nonprofit work first with the National Alliance on Mental Illness of Virginia. And then again with the Virginia PNA, the disAbility Law Center of Virginia. I feel like each step to getting to NCRN has been a new layer of experiencing how disability rights touches every aspect of our lives. I feel like I’ve really learned a ton. And today I see the world through the lens of ableism, and I want to be in a world where people with disabilities, whether visible or invisible, are valued for who they are. At its core, I believe people like me deserve to exist and know that we are valid to show up however we show up.
Stephanie Flynt McEben:
Alden, I know that you’ve talked a little bit about your experience and what interested you in joining NDRN and the network. Can you talk a little bit more about what disability rights work means to you personally? I know that for me, that’s just something that we automatically connect to. I know for me as a multiply disabled person, that’s definitely something that I take with me when it comes to doing my work from the day-to-day. And I imagine that you’ve got similar points, but would love to hear you expand a little bit more on that.
Alden Blevins:
Yeah, absolutely. Again, I see everything through that lens of ableism because of my own personal lived experiences. I have my own things that have happened to me through the lens of employment, through the lens of healthcare that are related to my own disabilities. So when I hear stories of other people struggling with some of the same instances of ableism or the same barriers that I struggled with, I’m able to really empathize with them and put myself in their shoes. So I think that my own disability identity has definitely helped me understand better what the world of disability rights means and why people maybe have more pride or try to cultivate that self-acceptance in their disability identities because I think that’s what feels the best and the most affirming to me. And I try to bring that to my work here at NDRN.
Michelle Bishop:
100%. Absolutely. Disability, we talk about it all day every day in this work that we do on this podcast, but it’s not this abstract thing. Disability and disability rights are very real. It’s something that we live every day. It shapes so much about our lives, our personal lives and our work. Can you walk us through that journey for you? You talked about how it impacted your education, you and the workplace, healthcare advocacy. Can we take it back to, tell me about young Alden? Did you know you had AuDHD at the time when you were in school? And how did that impact you?
Alden Blevins:
I definitely did not know that I had autism and ADHD. I went through some processes of misdiagnosis. When I was really small, I was diagnosed with anxiety and depression at age 10 due to extreme fluctuations in behavior and my ability to cope. They were interpreted by my family as dramatic moods or tantrums, but what I was actually experiencing were autistic meltdowns. But because clinicians in the ’90s didn’t really see me or any young girls for that matter as autistic, they missed the root causes of my behavior. I began taking anxiety meds and I continued with that all throughout high school and early college, but there were still a lot of other sensory and social things that the diagnosis just didn’t explain. I always knew there was something different about me. I remember feeling like an alien as a very little kid, and I did continue to struggle a lot with meltdowns and mood regulation through early adulthood.
Alden Blevins:
I was misdiagnosed with that anxiety and depression for years. Later, I eventually acquired another misdiagnosis of bipolar. The clinicians just generally lacked knowledge about how autism presents in women and girls throughout the 90s and 2000s. And especially because I had already made it to adulthood without the diagnosis, they didn’t necessarily have the knowledge to interpret what do these symptoms look like on an adult woman. I get the comment a lot of like, “You’re nothing like my 8-year-old nephew who loves trains.” And I’m like, “I am a 32-year-old woman, so I am different from your 8-year-old nephew.” And sometimes people don’t necessarily realize what that diagnosis can look like kind of on different people.
Alden Blevins:
But once I finally did get my diagnosis of autism and ADHD, I began self-accommodating. The diagnosis really gave me the confidence to claim my place in the disability community. And I began starting thinking about myself as a member of the disability community. But before that I didn’t, which is honestly a little silly because under my old diagnoses of anxiety and depression, I was struggling just as much, but that didn’t feel like to me a valid enough explanation for everything or a reason to need extra help. These labels fit me better, that they were really helpful for me in contextualizing what were the root causes of some of the things I was experiencing. So no, little Alden did not know at all, and she did not find out fully until she was 29 years old. So it’s been a journey.
Stephanie Flynt McEben:
I can only imagine that is… Oh my goodness, definitely been there, done that. I know that I had a similar journey with my own mental health disabilities. There’s just so much stigma that surrounds different mental health disabilities. So it’s understandable that there’s just this worry of identifying with the disability community in that sense. And I’m really glad that I feel like we’re getting to a point where we’re seeing folks more or less identify with the disability community when it comes to mental health conditions. Because I feel like, it’s just like you said, it really does affect people just as much as other disabilities. And I’m glad that we’re at a point where we’re seeing that. Would love to know what barriers you encountered during those points, but also too, how you overcame them and how you’ve overcome different barriers knowing that you were a part of the AuDHD community.
Alden Blevins:
Yeah, absolutely. So I would say for me, the key places where barriers seemed most likely to manifest were at work and in healthcare. And for me, I am somebody who can quote-unquote, “Pass” as neurotypical where you wouldn’t necessarily know I was autistic just from your first interaction with me. And that could have pros and cons because it means that I’m able to access better career opportunities, it means that I’m able to protect myself in spaces that feel ableist or unsafe by maybe going a little bit more under the radar, but it also means that I wasn’t really accommodating myself or thinking about myself as a person with a disability.
Alden Blevins:
And it means that sometimes when you are in those situations where you’re having to mask or having to put a certain face on your behavior to get people to take you seriously in the workplace, it means that sometimes I would run into situations where I was falling in people’s uncanny valley, if that makes sense, where they knew something was up with me and that I wasn’t communicating in a way that they would normally expect, but they didn’t have context or understanding for why that might be.
Alden Blevins:
And I found that that was really challenging for me in the workplace. People would misinterpret my need for clarity and asking lots of questions as, say, challenging their authority, or people would interpret bluntness as me being rude, or people would, say, interpret my focus on little details as being pedantic and not just the way that my mind works. And I find that when I do lead with some honesty about where I am and who I am and what I bring to the table, that people are just generally more compassionate and willing to meet me where I am. So that’s been part of the self-accommodation process.
Alden Blevins:
But also, especially in the workplace, I think finding a job that is really suited to your strengths and your weaknesses for that matter is something that can be really helpful to autistic people. I know that there are autistic people who find a lot of refuge in, say, the coding community because they are known for loving rules or needing to pay attention to detail or noticing things other people miss. That makes them accepted and is considered a norm within the coding community. I also find that careers like the arts or the disability service space tend to be a little bit more accepting of people with disabilities.
Alden Blevins:
So I’ve been very lucky to find opportunities within the disability service space so that I was able to better accommodate myself at work. Unfortunately, when I was teaching in the public schools, there was just not a lot of room or flexibility to be able to accommodate myself, and it was really, really challenging for me to be able to work full-time. So changing the way I viewed things and forcing myself to look for opportunities that really met my own needs were something that really helped me with encountering those barriers in the workplace.
Michelle Bishop:
You mentioned the healthcare system too, and I’m really glad that you did. And you talked also about getting a late diagnosis and being misdiagnosed. And I think all that’s really important because we’re hearing so much these days about the number of people with autism is increasing. Why is autism on the rise? And I’m like, “Is it increasing or are we just actually correctly diagnosing people these days?” Were they just going undiagnosed in the past and people though, like you said, that they were maybe just be rude or something like that if someone was a little too blunt? I think of it the same way, I think it was like a bunch of combat soldiers didn’t suddenly start getting PTSD. That was always happening, we just didn’t call it that and we didn’t know what it was. And we didn’t ever talk about it and we didn’t do anything to help them when they came home.
Michelle Bishop:
Sometimes the numbers go up because we start paying attention to and speaking about something that we’ve been ignoring for a long time. And I think that in my mind, school us on this, Alden, but in my mind, I think that’s really true in the healthcare system right now and how autism is being addressed. Can you talk a little bit about that, what it feels like maybe being mislabeled or misunderstood in the system?
Alden Blevins:
Yeah, so absolutely. For me, it definitely feels like we are just now getting to the point where the information that clinicians have is up to date and where the stigma around autism has decreased enough that people are willing to publicly claim their identities and to talk about their experiences more openly. I know that there’s a lot of fear in the autistic community at times with self-disclosing, especially in our current climate. And I think that part of the reason that it appears that diagnoses are rising is simply because there is less stigma and there is more increased information.
Alden Blevins:
So more people are willing to take the risk of getting their child labeled with something like autism if they think it means that their child’s going to be better able to act access services and supports instead of it just being something that is a label that hinders their child’s journey or stigmatizes them in some way. And I know from teaching, speaking with parents who I was very frank with about my own mental health experiences and my own experience with disability, that there is still fear of labels and what that means and what does that mean for your child’s future.
Alden Blevins:
So I think that overall a lot of the attitudes around autism are changing. We have shows like Love on the Spectrum. There’s a lot more autistic community that’s available in online spaces and public for the world to see. And I think that those kind of spaces that make autism more visible has definitely made a lot more people think to themselves, “Could I be autistic? My parents always behaved in this way.” Thinking about the traits in their families and things like that, I think it’s all really contributed to that feeling as if the cases are rising.
Alden Blevins:
Another thing that I do want to mention just from a historical point of view is that the diagnosis of autism is fairly new and has gone through some diagnostic changes over the course of developing the Diagnostic Statistical Manual 5, which is what they use to diagnose people with today. There was a point in history where autism was categorized either as being feeble-minded or as childhood schizophrenia. So there is periods in history where people were not being diagnosed with autism at all, and of course that makes the, “Rise”, quote-unquote, that’s happening now appear more stark.
Alden Blevins:
So just to have that historical context as another example, in the DSM-4, Asperger and Sensory Processing Disorder or SPD were all separate diagnoses. Whereas in the DSM-5, all of those things have been folded into autism. So it really is a case of kind of a confluence of factors making it appear that the numbers are going up. When in reality, in my mind, I feel as though autistic people have always been here. You can hear examples of us in people throughout history. You can hear whispers of autism and descriptions of Michelangelo or Albert Einstein.
Alden Blevins:
So I think we’ve always been here and it’s just a matter of it being more labeled and discussed now that really is having people feel like there’s some sort of epidemic or major change. When in reality, I think we’ve gotten a lot better at understanding what autism actually is and what it looks like.
Michelle Bishop:
I love historical and pop culture references in that, yes. Love on the spectrum, now all I’m thinking about is we have to get Tanner on the show.
Alden Blevins:
Ugh, I love him.
Michelle Bishop:
Tanner, if you’re hearing this, please come on our podcast. We are fans. We just want to chill with you and maybe record an episode. It’s true, I think there’s a lot to the idea of disability identity and disability pride and identifying with a disability community. That’s a journey for everyone. And I think especially if you have a disability that is somewhat invisible, I think it’s really different than going through life using a wheelchair where everyone knows, everyone knows, versus having unseen disabilities and really owning that and having a sense of identity and pride in that. I think that’s really cool. And I agree. I think we’re having more mainstream conversations about autism these days. The kind of discourse we’re seeing around autism now, does it reflect your experience? Do you think it’s accurate in telling the story of the autistic community?
Alden Blevins:
Not really. I, like I mentioned, am what people would call a high masker. So on the outside, I look like I’m fine, but on the inside, I’m really doing a lot of behind the scenes work to function or appear as normal or neurotypical. So contrary to popular belief, I can write poems, I can pay my taxes, I can do more than most people in a lot of ways, but I am still very much autistic and I still need supports in ways that other people don’t. Furthermore, I think I honestly have more in common with someone who can’t do those things than a lot of other people might realize or recognize. Our sensory struggles look the same. Our struggles with mood regulation look the same. And I want to emphasize that people who can’t necessarily put pen to page or quote-unquote, “Contribute effectively to society” are still valid, they’re still entitled to their life, their autonomy and their happiness, whether or not they can do those things.
Alden Blevins:
So I think that as a whole, we don’t really seem to understand well that autism is a spectrum. Something that I’ve heard over and over again is if you’ve met one person with autism, you’ve met one person with autism. And I think that that really resonates true for me. And I think that there are a lot of other people as well who probably don’t feel like they’re represented in the public perception or the public conversations around autism, either because they’re a high masker like me, or I think sometimes there’s an opposite end of the autistic experience that isn’t as represented in the media. What is it like to look like someone who doesn’t speak, who instead uses something like AAC, augmented communication device, to be able to communicate with their peers? I think that those perspectives of autism are also often left out of the conversation.
Alden Blevins:
So I think it’s getting better, but I do think we still have a long way to go in terms of autistic representation and really thinking and knowing and understanding what the totality of the autistic community looks like.
Michelle Bishop:
That’s really interesting. As someone who probably knows half of what I know about autistic people from what I see in pop culture and the other half from people I know, that’s interesting to think through, and now I’m wondering… Because I think that’s what a lot of people know about autism is how they see it represented on television. How does that translate into public policy? Is what we’re seeing in terms of policy reflective of who autistic people are and what they need and want to see? If not, this podcast mostly goes out to the PNAs, like what role can we play in making systems work better for autistic people?
Alden Blevins:
Yeah. I would say that a lot of times autistic people are left out of those conversations and perhaps not intentionally, not maliciously, but there’s this double-edged sword where in the autism community, if you are someone who has a lot of support needs, then you are denied autonomy, you are denied agency, you are denied your point of view about what’s happening to you and what’s happening to autistic people is valid or trustworthy. So that happens to people who have a lot of support needs. And then on the flip side, for someone like me who maybe has fewer support needs, you’re often denied supports or the conversation is, “You don’t need that, you can get along just as well as everybody else.” So there’s this push and pull between no matter what end of the spectrum you’re on, you’re dismissed for being able to represent your experience.
Alden Blevins:
A lot of times there’s this push and pull between the caretaker community and autistic adults. And I think that they see someone like me who can use their words, who is able to get opportunities. And there’s a resistance to someone like me speaking or using their voice and them feeling like it’s on behalf of their child who does not necessarily have the same experience as me. So I would just say that a wider breadth of autistic representation so that both people like me and people who have a totally different experience with autism are still seen in the diagnosis and understood that that’s what they’re experiencing.
Alden Blevins:
I think a lot of times people have one person as their frame of reference. And again, that’s one person with autism. So I think meet more autistic people, talk to people you know, think critically about some of the representation that you see on TV and in movies. Surrounding myself more with those perspectives helped me be able to see what the reality is in terms of the diversity of the autistic community and how many different points of view we really represent.
Stephanie Flynt McEben:
I loved that. Thank you so, so, so much for sharing that. And that’s one thing that I feel like we don’t think about as much subconsciously. When we’re consuming media, a lot of the time when it comes to the disability community, that’s where people get that representation, like Michelle was saying, and like you pointed out. When speaking about your experiences, media really can and does have an effect on the way that individuals with disabilities are seen and the way that autistic people are seen. So thank you for spotlighting that. Oh my goodness, I could get on a soapbox about media and disability and the various representations that I’ve seen that have been good and not so good. So yeah, oh my goodness.
Stephanie Flynt McEben:
But yeah, we have definitely talked a lot about lived experience, putting those lived experiences into policy change. And clearly there is so much going on in the world. Would love to know how you like to unwind, how do you take care of yourself in doing this work? Because we all know we cannot do this work unless we take care of ourselves and fill our own cups. So would love to know how you do that.
Michelle Bishop:
Yes, retweet, the important questions.
Alden Blevins:
So something else that’s really special to me about being an autistic person, and I think that’s like one of the most beloved or most thought of aspects of our community, is that we have what are called special interests. And special interests are just a topic that we focus really intensely on and go for both depth and breadth. I’ve experienced students whose special interest was taking apart speakers and putting them back together. I’ve experienced students whose special interests are One Direction, their favorite boy band, something that looks like very natural for a teenage girl to be interested in. I’ve seen all sorts of special interests. The 32-year-old dungeon master who will talk your ear off about his favorite MMA fighters. That’s another way that special interests could look.
Alden Blevins:
So when I am really trying to recharge myself, I dive into my special interests. I love music, I love pop music, I love studying the billboard charts, I love playing music and songwriting. And those are the things, those kind of creative outlets are what I turn to when I’m really needing to fill my cup. Experiencing those interests in community is another thing that really helps me fill my cup, so going to a concert with some friends in the real world or some people go to conventions and things like that to dive deep into their special interests. So those are some things that really help me recharge myself and feel ready to tackle the day and whatever’s coming at us next in the realm of disability advocacy.
Michelle Bishop:
I felt that a little too hard, I’m not going to lie. Speaking of autism being a spectrum and everyone falling on that spectrum somewhere, I’m definitely a special interest queen. I become obsessed with things and learn everything about them. So I feel very seen right now, Alden, thank you.
Michelle Bishop:
Anything else that we need to know about you as our new feels leader of National Disability Radio, the important stuff like things that bring you joy?
Alden Blevins:
We talked about it a little bit earlier, but something that’s bringing me a lot of joy right now is just obsessing over Taylor Swift and what’s going to happen with this new album. I’m ready for a new era, baby. I’m ready.
Stephanie Flynt McEben:
We are ready for it.
Michelle Bishop:
We are all going into our show girl era.
Alden Blevins:
Yes.
Michelle Bishop:
The swifter hood. We’re going to start getting emails to the podcast email that are like, “You have to stop talking about Taylor Swift and start talking about disability rights.”
Alden Blevins:
Yeah.
Stephanie Flynt McEben:
Haters are going to hate.
Alden Blevins:
As the queen herself said, haters are going to hate.
Stephanie Flynt McEben:
Right. Exactly.
Michelle Bishop:
Before we wrap up today, first, Alden, oh my gosh, thank you so much for just sharing all about you and jumping right in and talking all about autism and lived experience and policy and everything under the sun. That was amazing. And I’m sure you’ve heard the podcast before, so I’m sure you know that before we wrap up, Stephanie has a joke for us, I’m sure.
Stephanie Flynt McEben:
I will say this. I’ve gotten some constructive criticism that my jokes have been a little too hard lately. So I think this one’s going to be easier, but yeah. So what is a tree’s least favorite month? There are only 12 options.
Michelle Bishop:
I feel like December when they all get chopped down and decorated.
Stephanie Flynt McEben:
That’s a good one, but no.
Michelle Bishop:
Alden, what you got? See, these are still hard.
Alden Blevins:
I truly have no idea. I am sitting here reciting the months to myself like an elementary schooler and have not yet found the right answer.
Stephanie Flynt McEben:
My goodness. Okay. No more guesses?
Alden Blevins:
Okay. Oh, what is it?
Stephanie Flynt McEben:
September.
Alden Blevins:
Oh my gosh.
Michelle Bishop:
[inaudible 00:28:27].
Stephanie Flynt McEben:
Oh my gosh, I’m so proud of myself.
Michelle Bishop:
Look, you’re winning me over.
Stephanie Flynt McEben:
Y’all heard it here first, folks.
Michelle Bishop:
It’s about time. We’ve actually been friends for years. It’s probably like me and Jack, they probably think we hate each other.
Stephanie Flynt McEben:
Yes.
Michelle Bishop:
Stephanie is the most wonderful person ever. She’s the nicest person you could ever meet.
Stephanie Flynt McEben:
Oh, thank you.
Michelle Bishop:
It’s all love on this podcast, guys. It’s all love. Other important business before we wrap up, I hear Alden does some songwriting and we totally need a new theme song for this podcast.
Stephanie Flynt McEben:
Yes.
Alden Blevins:
Ooh, okay.
Stephanie Flynt McEben:
I can help with piano composition if you want, Alden, and then we can help with lyrics. I actually do some songwriting also, so we should definitely connect.
Alden Blevins:
Okay, yeah, absolutely. We need a jingle.
Stephanie Flynt McEben:
Yes, yes. Jack has been pushing for this for a while and life has been life-ing, and so I haven’t had a chance, so we should totally do that.
Alden Blevins:
That would be awesome.
Michelle Bishop:
I’m into it. Look, we had a good joke, we had a good conversation. Alden, can you tell the people where they can follow us?
Alden Blevins:
Yes, we are actually now available on all of the platforms where you get your podcasts. You should be able to look up National Disability Radio on iHeartRadio, on Apple Podcasts, on Pandora Music, on YouTube Music, and be able to find us in any of those places. If you cannot find us somewhere, you can always go ahead and check out our website. Under the resources tab, you’ll be able to find a button that says National Disability Radio where you can find a full feed of all of our episodes.
Stephanie Flynt McEben:
Wonderful, wonderful. Thank you so much, Alden. And again, welcome, welcome, welcome. We are so excited to have you as our pro host, but until next time, folks, bye.
Jack is going off to law school. So the gang sits down to reminisce on his time at NDRN, share a few stories from behind the scenes, and hear a joke from Stephanie that gets a good laugh out of us.
Full transcript available at: https://www.ndrn.org/resource/ndr-august25/
Jack Rosen:
Like we have any sort of agenda for today, so just sort of going to get what I get. Turn that into a podcast, I guess.
Stephanie Flynt McEben:
Sure.
Michelle Bishop:
And that’s different from any other episode because…
Jack Rosen:
It’s not, it genuinely, I guess is not, I suppose at some point we’d have a guest and questions we thought we should ask them.
Michelle Bishop:
Oh.
Stephanie Flynt McEben:
I’m the guest and I have the questions. I don’t know.
Jack Rosen:
I’m pretty sure you’re not the guest.
Michelle Bishop:
It’s fine.
Stephanie Flynt McEben:
I’m pretty sure Jack is the guest.
Jack Rosen:
I’m sort of the guest.
Stephanie Flynt McEben:
What?
Michelle Bishop:
Wait what?
Stephanie Flynt McEben:
This episode is for Jack, isn’t it?
Jack Rosen:
It would be very funny if we just made it the Stephanie episode, even though we’ve done like two of those.
Stephanie Flynt McEben:
No. That would make me feel like such a bad chicken nugget.
Jack Rosen:
Even though we’ve already done-
Stephanie Flynt McEben:
This is all about you.
Michelle Bishop:
We already did a Stephanie wedding episode.
Jack Rosen:
We did a whole one about you getting married.
Stephanie Flynt McEben:
We’ve already done a bunch of episodes about me doing chicken-nuggety things like, come on.
Michelle Bishop:
Oh, that reminds me. My mom wants to hear about the legally blind Uber driver.
Stephanie Flynt McEben:
I forgot that I slipped that into an episode.
Michelle Bishop:
Yeah, she’s still listening and she has some follow-up questions.
Stephanie Flynt McEben:
I love this.
Michelle Bishop:
Well pack might have to address that at some point.
Jack Rosen:
Well, Stephanie, do you want to address it? I mean, let’s give the people what they want, I guess.
Stephanie Flynt McEben:
Yeah, I guess we can give the people what they want.
Michelle Bishop:
Yeah, we have one listener, so we should probably follow up on that for her.
Stephanie Flynt McEben:
Yeah, no, that makes sense. And Carol, thank you so much for being a dedicated, loyal listener to this wonderful podcast. So I will give a slighter Cliff Notes version just so it doesn’t take up the whole hour. So I am waiting for a car outside of, I can’t remember which Metro stop it was, but I had to go get something, and so I just figured I’d take an Uber home from the Metro because that particular Metro was a lot easier to get a car and it would only be a 20-minute ride. Okay, fine. This is what I’ll do. And so I get out of the Metro station, I’m trying to find my driver or whatever, yada, yada, and I can’t even remember his name. Maybe we should just call him Bob for anonymity. I am bad at saying that too. But yeah, so Bob pulls up in some sort of Toyota of some sort and I get in the car and we start driving and I noticed that I’m hearing a lot more horns, but I’m just not thinking about it because it’s rush hour DC traffic.
And then we started, he was like, “You know, I’ll be honest with you, I’m legally blind. I can only see out of one eye.” And I was like, “Oh, okay.” And I’m just trying to think of some of the things that he said, but he said different things that were essentially low vision, blind hacks or what have you. I’m trying to remember the specific hacks, but honestly, when he said, “I’m legally blind,” I was kind of like, “Huh, Jesus, take the wheel. Please get me home safe.” So it was a wild ride. No, that was not an intended pun but we can make it a pun.
Jack Rosen:
So you’re saying he might’ve had limited vision in the one eye?
Stephanie Flynt McEben:
Yeah, potentially. But, he said that he was only legally blind, he was legally blind or totally blind out of one eye, and then he could see out of the other eye just fine.
Jack Rosen:
You don’t sound convinced he could see just fine out of the other eye.
Stephanie Flynt McEben:
I’m not.
I don’t want to say it. Jack has to say it.
Jack Rosen:
I don’t want to say it. Michelle, kick us off as always.
Stephanie Flynt McEben:
Yeah, Michelle, you do that. Yeah.
Michelle Bishop:
Why is it always me? Okay.
Stephanie Flynt McEben:
Because you’re such a good public speaker and I’m really sad right now.
Jack Rosen:
We’re already dealing with enough change. I don’t want to deal with more. Could you please kick us off?
Michelle Bishop:
On this very special episode of National Disability Radio, we say goodbye to our pro-host extraordinaire, Jack Rosen, who is leaving NDRN to go to law school. Yay, Jack. We need an applause. We’ve never had an applause. Can we-
Stephanie Flynt McEben:
I know I keep saying that. Oh my gosh. But seriously, Jack, we’re going to miss you so, so, so much. And you have been an amazing pro-host with the most.
Jack Rosen:
I also have bad news. I definitely did not have enough time left to add in the applause, but…
Stephanie Flynt McEben:
Clap, clap, clap, clap, clap, clap clap, there. I’m trying not to, oh man. That made me sound facetious. I might have to-
Jack Rosen:
No, we’re keeping that in.
Michelle Bishop:
That’s definitely staying in. The part where Stephanie was very salty with you is definitely staying in. This is still the most professional podcast in the business.
Stephanie Flynt McEben:
Yes, it is.
Michelle Bishop:
We pay the big money for the good effects.
Stephanie Flynt McEben:
Yes.
Jack Rosen:
But thank you Michelle. I am sad to be leaving NDRN. It’s been five years here. I started back, for those who don’t know, I started back in 2020. It was actually pretty early COVID. It was May the fourth, because I’ll always remember it’s Star Wars Day.
Michelle Bishop:
Yes. You started-
Stephanie Flynt McEben:
May the fourth be with you.
Jack Rosen:
And it’s funny, NDRN was pretty much the last job interview I had at the start of COVID because nowhere else in the world was hiring. And I interviewed with Michelle and David Hutt and our former ED for a position on the voting team, and I told them at the time like, “Hey, my background is really in politics and comms. I’m a person with a disability. I have ADHD. And I’ve received services throughout my life for it, but I don’t know a ton about the disability rights movement, but I’m willing to learn.” And I got lucky enough that they decided to take a chance on me.
And so for the first two years I was here, I worked for Michelle helping get out the vote in the role that our friend Monica is in now. Then about three years ago, I switched over to the communications team, and one of my first projects there was that we had this podcast they wanted to restart and for, God, yeah, three years now since, we have been putting this out together, meeting once a month, usually meeting twice a month because we’re disorganized and what we do is create a podcast episode and then every time forget to do the intro and outro to it. A little behind the scenes, we have never recorded one of those in the same time we’ve recorded the interview.
Michelle Bishop:
They have to know because sometimes one of us just isn’t .there
Stephanie Flynt McEben:
Or is sick or something. Thank you-
Michelle Bishop:
For part of the episode, how come Stephanie was in the interview, but she wasn’t there when they did the intro?
Stephanie Flynt McEben:
Right. They have questions.
Michelle Bishop:
We’re super good at this.
Stephanie Flynt McEben:
We have all the questions. We are sorry guys. Sometimes we have migraines, sometimes things happen in life.
Michelle Bishop:
Also, Stephanie made us start the podcast.
Stephanie Flynt McEben:
I did not.
Michelle Bishop:
That was 100% Stephanie. I was the only host that was left, Justice and Erica were already gone. And Stephanie was like, “I want to host a podcast. We need to do this podcast.” And then they were like, “I guess Jack has to do it and produce it.”
Stephanie Flynt McEben:
So what you’re saying is that I made Jack and you do this against your will.
Michelle Bishop:
Yes.
Stephanie Flynt McEben:
No.
Jack Rosen:
You definitely added a significant chunk of my workload. This is one of my core responsibilities.
Stephanie Flynt McEben:
I’m sorry.
Michelle Bishop:
We remember it the same way. It was totally Stephanie.
Stephanie Flynt McEben:
It was not.
Jack Rosen:
I kind of think it was you Stephanie.
Stephanie Flynt McEben:
Lies, slander, blasphemy.
Jack Rosen:
I know Michelle did not want to start doing this again.
Michelle Bishop:
Another episode.
Stephanie Flynt McEben:
I kind of made it worth it with my awesome jokes, right, yeah?
Michelle Bishop:
Oh, um…
Stephanie Flynt McEben:
No?
Jack Rosen:
I’ve enjoyed Michelle’s reaction to them a lot. When did we, now I’m wondering when we started adding the puns. I think it was-
Michelle Bishop:
From the beginning.
Jack Rosen:
It wasn’t the first episode. I’m looking right now. It was the second one Stephanie.
Stephanie Flynt McEben:
It only took me one episode.
Jack Rosen:
It took you one episode, and then on the third one we added, I believe Stephanie’s iconic sound.
Stephanie Flynt McEben:
Yes.
Michelle Bishop:
For Stephanie’s Joke of the Month. Everyone else needs to know what we are living with over here with Stephanie and the puns.
Stephanie Flynt McEben:
I’m sorry that you guys have been personally victimized by me for almost four years now.
Jack Rosen:
So yeah, after five years here, I decided it was time to make a little bit of a career change and I decided to go to law school. I decided, I’ll say hopefully a career change, but not necessarily a field change. The law school I picked out is one that has a disability law clinic and a strong focus on public interest. It’s sort of funny. It all comes full circle that I can remember five years ago telling you guys, I don’t know a lot about this, but I’d like the opportunity. And it was something I always vaguely wanted to do, disability rights, but I thought it would be like, oh, after I’ve had a corporate or a politics career, maybe I could give back that way.
And even then it was just vaguely I’ll do something to help people with disabilities, it wasn’t, I want to get into legally-based disability advocacy. And five years later I’m like, oh, when I’m looking at these law schools, I need to find one where I can go further in this field and expand my skill set and be able to do more here. So I don’t know, I’m sad to be leaving. I’m also grateful to you, Michelle, because it definitely changed my career trajectory in a way I never expected. And it is bittersweet. But we have shared probably too much of our personal lives on this podcast for three years now. So we figured really no other way to end it than with the podcast.
Michelle Bishop:
And we are three of the least interesting people.
Stephanie Flynt McEben:
Hey, rude. Everybody thinks I’m interesting.
Michelle Bishop:
No, Jack, we’re going to miss you.
Stephanie Flynt McEben:
Yeah we are.
Michelle Bishop:
It has been a pleasure to work with you all this time. I’m glad we converted you into a full-blown lifelong disability rights advocate.
Stephanie Flynt McEben:
Yes.
Michelle Bishop:
[inaudible 00:10:09] on you when you were young, scrappy and hungry.
Stephanie Flynt McEben:
We did not throw away our shot as NDRN.
Michelle Bishop:
I’m going to quote Hamilton in this episode until we get sued because we have to get sued at least once.
Stephanie Flynt McEben:
We have to get sued for Jack’s last episode.
Michelle Bishop:
We have to get sued at least once before Jack leaves.
Stephanie Flynt McEben:
Lawsuit, lawsuit.
Jack Rosen:
It’s been my entire goal while producing this podcast has been to get us sued. I’ve tried by-
Michelle Bishop:
We’ve tried everything. How many copyrights can we violate?
Jack Rosen:
We’ve tried to get Taylor to sue us. We’ve tried to get the cast of Hamilton. We didn’t do Disney. We’re scared of them.
Stephanie Flynt McEben:
I thought we did do Disney. Remember, we sang Let It Go?
Michelle Bishop:
We sang Let It Go?
Jack Rosen:
You know what, yes, we did do Disney.
Michelle Bishop:
I thought Jay-Z was going to sue us when I didn’t put him in my Top Five on the live episode.
Stephanie Flynt McEben:
Oh, on the live episode. I was like, wait, is going, how is Mississippi, Michelle?
Michelle Bishop:
It’s raining.
Stephanie Flynt McEben:
The rain in Mississippi is annoying. It’s like extra humid.
Michelle Bishop:
Totally. All the time. Oh yeah. It’s humid. I’m not built for this.
Stephanie Flynt McEben:
No, it’s extra humid.
Michelle Bishop:
It’s stormy. The whole time. So I haven’t really gotten to see the glory of your home state.
Stephanie Flynt McEben:
Oh, so sad. Yeah. Nope. You got to go to Keefer’s and Bulldog.
Michelle Bishop:
Okay, I’ll work on that.
Jack Rosen:
What is Bulldog?
Stephanie Flynt McEben:
But Jack, seriously, we are very much going to miss you, and I just can’t thank you enough for being such a good coworker, colleague, friend, and confidant during my time at NDRN. And I know that you won’t be far, but yeah, it’s been amazing working with you. Whether we’re coming up with tweets or I’m bothering you with puns or all that good stuff. Oh, or that one thing that happened last year at annual conference], the getting kicked out of the bar thing, which probably should be.
Michelle Bishop:
That’s why-
Jack Rosen:
In our defense, and we’re not going to say which bar, they were being kind of ableist.
Stephanie Flynt McEben:
They were totally being ableist.
Jack Rosen:
Can we tell the story on the pod?
Michelle Bishop:
Don’t name the bar. That’s definitely how-
Jack Rosen:
We’re not going to name the bar.
Stephanie Flynt McEben:
Is it bad that I can’t even remember what the name of that bar was?
Michelle Bishop:
Where was I even when this was happening?
Jack Rosen:
I think you must have been asleep. Wait, we can’t say where we were either, Stephanie.
Michelle Bishop:
Did you just call me old in the middle of a podcast episode. Where was I when you guys were at the bar?
Stephanie Flynt McEben:
Asleep, Michelle, you’re ancient.
Jack Rosen:
You were invited. Yeah, but I think we were there at like 11:30 at night.
Michelle Bishop:
Okay. That’s worse. Could you tell people it was like 2:00 A.M. or something?
Jack Rosen:
Yeah. Stephanie and I were out, we were at the club. It was 3:00 A.M.
Stephanie Flynt McEben:
Everybody in the club getting, okay, I’m done. Anyway, it was 3:00 A.M. We were at the club in Nowhereville.
Michelle Bishop:
It’s 11:30, you know your Gen X bedtime does not allow you to be up past 10:00.
Stephanie Flynt McEben:
Low key. I go to bed at nine o’clock on the rag.
Michelle Bishop:
We need older people on this podcast.
Stephanie Flynt McEben:
Oh, come on. I go to bed at nine o’clock. I’m basically an oldish person now.
Jack Rosen:
I’m pretty sure your new producer is going to be my age, I’m pretty sure.
Michelle Bishop:
But if we’re getting the producer, I think we’re getting, she is a Swifty, so now it’s just going to be an all Swifty crew. So we look forward to the next episode of this podcast where it’s all about people with disabilities who love Taylor Swift.
Jack Rosen:
I may have warned her when I was telling her how to produce the podcast. I’m like, so for the first 20 minutes they usually talk about Taylor and then I turn the recording on after, so I don’t have to go through all of that because eventually we’ll just get to the podcast. But you got to let them go through talking about Taylor Swift first.
Stephanie Flynt McEben:
<< Don’t say that I didn’t warn you >>
Michelle Bishop:
Nice.
Stephanie Flynt McEben:
I’m over here-
Michelle Bishop:
You don’t need to hear all my theories about when Rep TV was going to be dropped since it’s apparently never coming. So that’s fine. I have a little embarrassment.
Jack Rosen:
You have been predicting it for years.
Michelle Bishop:
I mean, some of the evidence was convincing, okay. Never mind. It’s fine. It’s fine. It’s fine.
Jack Rosen:
Is she not now that she owns her catalog? I thought she would anyway.
Michelle Bishop:
She never actually recorded it, so…
Jack Rosen:
Really?
Michelle Bishop:
Yeah, she’s only recorded like a quarter of it, so I’m thinking it’s a no. There’s going to be Vault Tracks though, Stephanie Vault Tracks. We still have things to look forward to.
Stephanie Flynt McEben:
I love the Vault Tracks, honestly.
Michelle Bishop:
Right?
Stephanie Flynt McEben:
Nothing New is like my jam.
Michelle Bishop:
You know I saw that Live with Phoebe Bridgers.
Stephanie Flynt McEben:
I am-
Michelle Bishop:
Oh, this is already transitioning into a Taylor Swift podcast and Jack is still here.
Stephanie Flynt McEben:
Right? God bless it. I’m still so jealous that you got to see Phoebe and Taylor and you got to see Taylor three times.
Michelle Bishop:
Okay. Jack Antonoff also came out that night and Ice Spice. Anyway.
Stephanie Flynt McEben:
Hair flip.
Michelle Bishop:
We should probably talk about Jack or at least disability rights or something.
Jack Rosen:
At least the podcast, maybe?
Michelle Bishop:
The podcast.
Stephanie Flynt McEben:
No. Let’s talk about Jack. This is the Jack episode.
Jack Rosen:
Okay. I guess we’ll do a couple stories from my time at NDRN.
Michelle Bishop:
Yeah, we need your favorite stories from your time at NDRN. Yes.
Stephanie Flynt McEben:
Don’t let either of us jack the episode from you.
Michelle Bishop:
Nothing illegal.
Jack Rosen:
Oh, come on Stephanie, that one was lazy.
Michelle Bishop:
Stephanie, did you really just say that?
Jack Rosen:
I have heard that-
Stephanie Flynt McEben:
Don’t let any of us jack the, oh, come on. That was fun.
Jack Rosen:
Not giving you that one.
Michelle Bishop:
I don’t don’t know if I’m disappointed or proud of that one.
Stephanie Flynt McEben:
You should be disproud-pointed.
Michelle Bishop:
It’s like 50/50. Anyway Jack, no illegal stories, please.
Jack Rosen:
No.
Stephanie Flynt McEben:
We don’t want to get sued for that reason.
Jack Rosen:
Okay.
Michelle Bishop:
Yeah, there’s certain things we want to be sued for and certain things we should avoid.
Stephanie Flynt McEben:
What are some of the funniest stories from your time at NDRN?
Jack Rosen:
Let’s think. I mean, yeah, as we alluded to, there was the time, Stephanie and I, at one of our annual conferences, we were out at an undisclosed location. It was very late. Michelle was in fact there earlier partying it up, but then she was like, “Hey, it’s 3:45 A.M. I got to get out of here before sunrise.”
Michelle Bishop:
Thank you.
Jack Rosen:
Yes. But no, they double charged Stephanie at this bar. They were claiming the credit card transaction wouldn’t go through, it was bad. They just kept trying to talk to me and show me the receipt and I’m like, A, I’m not dealing with this. You guys figure it out, and B, you are just being wildly ableist to us right now.
Stephanie Flynt McEben:
So ridiculous.
Jack Rosen:
But let’s see, what else? That one was wild just because I did not ever think in my years of working here, I would be not quite asked to leave, but certainly not asked to come back.
Michelle Bishop:
You did also ride in a self-driving car.
Jack Rosen:
We did-
Stephanie Flynt McEben:
Oh yeah.
Jack Rosen:
We did record an episode from a self-driving car. That was when Raquel was on the pod. It was me, her and Marcia.
Stephanie Flynt McEben:
I think I was also leaving a bar if I’m correct.
Jack Rosen:
That one was. That was after when we all went out to a Mexican restaurant at the Phoenix conference and Marcia just, we ordered it and Marcia just sort of volunteered. She’s like, “Okay, I wanna come along and see this.” I’m like, “Okay, but you’re on the podcast.”
Stephanie Flynt McEben:
That is the trade-off.
Jack Rosen:
Yes.
Michelle Bishop:
I also wasn’t there. I’m never there when these things happen.
Jack Rosen:
I don’t know why you weren’t there for that.
Michelle Bishop:
Am I always sleeping?
Stephanie Flynt McEben:
No.
Jack Rosen:
I feel like both of you weren’t there for the self-driving car one.
Stephanie Flynt McEben:
Yeah, I wasn’t there because I had, we were doing a public policy team dinner, so that’s why I wasn’t there.
Michelle Bishop:
It was supposed to be for Stephanie, because-
Stephanie Flynt McEben:
I know and I never got to ride-
Michelle Bishop:
Because it was supposed to be about self-driving cars for blind people.
Stephanie Flynt McEben:
I know. I never got to ride in it.
Jack Rosen:
Stephanie, they’re coming to DC.
Stephanie Flynt McEben:
I know. I’m so excited. Quinn on the other hand is not.
Michelle Bishop:
I’m pretty sure I saw one already.
Stephanie Flynt McEben:
Yeah, they were doing test laps around our building.
Jack Rosen:
Yeah, they’re testing a ton out in my neighborhood. I don’t fully trust them, but I’m not going to lie, they’re cheap and convenient and I’ve had some bad Uber drivers in DC.
Stephanie Flynt McEben:
Oh Lord boy, do we.
Jack Rosen:
Let’s see. What’s another appropriate NDRN story we could tell?
Stephanie Flynt McEben:
Appropriate.
Jack Rosen:
Really appropriate.
Stephanie Flynt McEben:
Any stories from traveling for the documentary?
Michelle Bishop:
That’s why I’m not here for any of them. I might only be there for the stories that are inappropriate.
Jack Rosen:
I mean, with the documentary, this was funny. So we’re there and we’re getting towards the last day of our travel in, so yeah, we were in South Carolina. It was me, Monica, and a third person who helped make the documentary who’s a little more private, but shout out them. They helped a ton with it and taught me a lot about filming.
But anyway, so the three of us, we discovered early on that week that our last night there Katt Williams was going to perform and we wanted to go. We all wanted to go really bad, but as the director, I had to keep being the bad guy and being like, “Okay, Monica, we will, if we don’t have any interviews scheduled that day, and we have all these people we need to interview before we can leave South Carolina, we can’t blow any off to,” she didn’t want to blow any off, but I had to be, as I often am at NDRN the last few years, the person who says no to things, and I don’t know if that’s feasible.
Stephanie Flynt McEben:
You guys don’t don’t know what kind of a bummer Jack is on a regular basis, y’all.
Jack Rosen:
And finally we got the last interview scheduled and we were so hyped. We all just went out to see Katt Williams together and it was the perfect way to end having worked together and been on the road for two weeks, traveling, filming, doing 10-hour days interviewing people.
Stephanie Flynt McEben:
And it probably saved your friendship with Monica.
Jack Rosen:
Oh yeah. Even if she’ll never forgive me for the fact I didn’t invite her to a music festival with my friends. That’s a joke.
Michelle Bishop:
She’s still trying to get into that with you though, right?
Jack Rosen:
What?
Stephanie Flynt McEben:
Daily.
Michelle Bishop:
Into that festival, or is this a different one?
Jack Rosen:
She what?
Stephanie Flynt McEben:
It’s a different one. There’s been two incidents.
Michelle Bishop:
There’s been two. Okay.
Jack Rosen:
Both times that I went to a music festival in Los Angeles I did not invite her to. It’s okay. You know I love you Monica, and we’ll go to the next one.
Michelle Bishop:
I do have a very special announcement to make for the After Hours Jack’s Goodbye episode. I have to say, you’ve been our producer for a couple of years now. We have frequently referred to as our pro host since you’re our producer, you’re our Gelman, if you will. Our producer who gets to talk during the episodes, not so much a silent partner as you first began. And so I want to say before you go, Jack, you are a host of the podcast.
Stephanie Flynt McEben:
See, finally.
Jack Rosen:
I’m genuinely a little touched.
Stephanie Flynt McEben:
We finally, we finally got you to admit it, Michelle.
Jack Rosen:
Finally.
Michelle Bishop:
That’s a very bad hatchet.
Jack Rosen:
After hosting episodes you haven’t been on.
Stephanie Flynt McEben:
Wait, Jack, are you crying?
Jack Rosen:
No.
Michelle Bishop:
No, but that’s how we’re going to tell the story, and then Jack cried. Also, the people need to know that we don’t actually hate each other.
Jack Rosen:
No. Michelle is like my mentor, she’s a friend, and she has been a mentor to me as I’ve entered a career in disability rights.
Michelle Bishop:
I’m like the sarcastic persona on this show, and I’m pretty sure everyone thinks that I’m mean, and I hate you guys, but we actually all get along quite well despite the fact that I’m apparently never there when anyone goes to the bar. But other than that…
Stephanie Flynt McEben:
We’ll make sure you’re there for the next one.
Michelle Bishop:
Thank you. I’ll probably be too tired, but I appreciate the thought.
Jack Rosen:
It’ll be funny. You’ll just miss my goodbye Happy Hour.
Michelle Bishop:
Oh.
Stephanie Flynt McEben:
I was going to say, are you going to miss that? Hopefully no.
Michelle Bishop:
No, I’m going to be there. I am, but that’s happy hour. That’s early enough so I can still get to bed on time.
Jack Rosen:
But thank you, Michelle. I appreciate that.
Michelle Bishop:
You do intros, you do outros, you help interview guests. Sometimes we make you read the guest bios because me and Stephanie just didn’t prepare, so I feel like at some point I have to let this go. We have to call you a podcast host.
Stephanie Flynt McEben:
Yes, and Jack is always the first one to come up with questions if me and Michelle are like, ugh, blank canvas stares.
Michelle Bishop:
I don’t want to say me and Stephanie never prepare, but…
Stephanie Flynt McEben:
But… Jack holds us together.
Michelle Bishop:
Yeah, yeah. It’s all him.
Stephanie Flynt McEben:
We’re going to miss that.
Jack Rosen:
My job is to wrangle everything together for the podcast.
Stephanie Flynt McEben:
Yeah. If you recorded all of the behind the scenes conversations, I’m pretty sure the podcast would be an entire Taylor Swift album and more.
Michelle Bishop:
Honestly-
Jack Rosen:
It used to, remember the podcast used to be an hour long and after the first year. I just said, “I am not doing that anymore. I am spending like 15 hours a month on this podcast.”
Michelle Bishop:
I’m also pretty sure that’s why no one was listening. Who wants to listen to an hour-long podcast?
Stephanie Flynt McEben:
I don’t know. I listen to hour-long podcasts all the time.
Michelle Bishop:
Oh, I can’t listen to podcasts. I don’t even listen to our podcast. I can’t listen to disembodied voices.
Jack Rosen:
I got to be honest, I still don’t know other than your mom who listens to our podcast.
Michelle Bishop:
I have no idea.
Jack Rosen:
Please, if you listen, write in at podcast@NDRN.org and tell me why you do. I have never quite been able to figure it out.
Stephanie Flynt McEben:
Oh my gosh. Yes, please. We need encouragement. Or maybe not encouragement, if people are like, oh my gosh, get these ding dongs out of my newsfeed. I don’t know.
Michelle Bishop:
Yes, there’s a good chance. There’s a good chance that could be the responses. It’s been a tough year, guys. Maybe just the good stuff. Thanks. Podcast@NDRN.org.
Stephanie Flynt McEben:
Yes. Retweet.
Michelle Bishop:
Also, Jack, if you just do a outtakes and bloopers episode and just go rogue and drop it on your last day so no one can do anything about it, I respect that.
Stephanie Flynt McEben:
I would totally respect that. That would be so fun.
Jack Rosen:
Pretty much-
Michelle Bishop:
How about all the outtakes of Southern Belle Stephanie cussing?
Jack Rosen:
Yeah, yeah.
Stephanie Flynt McEben:
Where are you going to find those?
Michelle Bishop:
Like one time that happened, probably.
Stephanie Flynt McEben:
I try not to curse on the recordings.
Michelle Bishop:
Or in real life, you say chicken nugget.
Stephanie Flynt McEben:
I know, but this year is a change in me. I don’t know. Look, I’m not trying to jack the episode away.
Jack Rosen:
Okay. A second time is lazy. This is like when you and Claire get all that mileage out of, I didn’t see you there.
Stephanie Flynt McEben:
Oh, come on.
Michelle Bishop:
That one never gets old.
Stephanie Flynt McEben:
That one never gets old. Claire and I would bump into each other and we would literally go, “Oh, I didn’t say you there. Oh, neither did I.”
Jack Rosen:
No. You know what? That might be my favorite NDRN story that Claire once did that to me twice in a day though, and the first time I was like, okay, that’s hilarious. And the second time it was still funny, but I’m like, damn, you are using this line every time you bump into someone, aren’t you?
Stephanie Flynt McEben:
Honestly, it’s really funny when you’re out in public and you say it just to random passersby because they don’t know how to take it. Usually there are some folks that are like, “Okay.” And then of course there are the folks that it seems like they’re gobsmacked when they hear, “I didn’t see you there.” And then they realize that it was a blind person who ran into them, and then here comes the end of the world. << It’s the end of the world as we know it, and I feel fine >>
Michelle Bishop:
Oh, R.E.M can sue us.
Stephanie Flynt McEben:
Yeah.
Jack Rosen:
You are really going for it on this one, Stephanie.
Stephanie Flynt McEben:
I am.
Jack Rosen:
I appreciate it. This is the send off I wanted. I can’t wait to be named in the lawsuit.
Stephanie Flynt McEben:
Oh my gosh.
Jack Rosen:
Oh wait. No, crap. Wait. No. I guess it’s okay because I’m doing this still as an NDRN employee, they can’t sue me personally. If I do come back as a guest, it can’t be one where I get sued. That’ll be a problem. Then they can go after me.
Stephanie Flynt McEben:
Fair enough.
Michelle Bishop:
We’re going to have you as a guest and just violate 30 different copyrights on that episode.
Stephanie Flynt McEben:
Just so that we can sing 80s music and Santana. I know Santana is not 80s, but I know that that was something I could never live down.
Michelle Bishop:
It is still too soon to talk about how you thought Smooth Criminal was a Santana song.
Jack Rosen:
Oh my God. That was still, just confidently telling that pun. Folks, if you go back and listen to, I don’t know which episode, but if you, let’s see if this will work. Can you find it? This one. Yes. If you Google Stephanie Flynt, Smoothie Criminal.
Stephanie Flynt McEben:
Wait, what? For real?
Jack Rosen:
Yes.
Michelle Bishop:
You can Google that?
Jack Rosen:
Everything’s transcribed for accessibility, so yeah, Google captures all of it.
Michelle Bishop:
Guys. We made it. We made it.
Stephanie Flynt McEben:
Man.
Jack Rosen:
In fact, if you google Stephanie Flynt, the fifth result is our recent episode. Should Stephanie get a Cat?
Stephanie Flynt McEben:
And the answer is still no. Thank you for checking.
Michelle Bishop:
Oh, that reminds me. Tell Quinn, there’s this stray cat that keeps laying on my patio. I’m going to get a carrier and snag her and bring her over for you guys.
Stephanie Flynt McEben:
Oh gosh.
Michelle Bishop:
Yeah. I got a cat for you.
Stephanie Flynt McEben:
Don’t bring it to Quinn at our happy hour on Tuesday.
Michelle Bishop:
Okay. I’m bringing a cat.
Jack Rosen:
Michelle, you got to bring a cat to the happy hour.
Michelle Bishop:
Right?
Jack Rosen:
Stephanie, I think it’s like a Godfather situation. Stephanie can’t refuse to take that cat on the day of my Goodbye Happy Hour.
Stephanie Flynt McEben:
Well, of course not. That would be inhumane.
Jack Rosen:
Okay. That was a good one. I’ll give you that one.
Michelle Bishop:
That was pretty good. That was pretty good. Can’t lie. I’m impressed today and I kind of like all the puns with Jack’s name. I don’t know why he’s so salty about it. Probably because he’s been hearing them for like 30 years, but whatever.
Stephanie Flynt McEben:
Probably so. I wonder how many puns ChatGPT has. I’ll have to figure that one out and send that to you, y’all. I do have a fun joke.
Michelle Bishop:
I was going to say, how do we end this episode? This has been an episode of nothingness. There has to be a way to wrap it up, but I guess if there’s a joke…
Stephanie Flynt McEben:
There is always a joke. Okay. This is not an original. I actually got this one from Ms. Pencils Away, which if y’all like my jokes, you would absolutely love her. Oh my gosh, she’s so funny. And here we go. So what is Beethoven’s favorite fruit?
Jack Rosen:
What?
Stephanie Flynt McEben:
Y’all got to guess first?
Jack Rosen:
Okay, let’s think Michelle. Beethoven’s favorite fruit. Do you want to hop on? My girlfriend’s sitting next to me and she thinks she figured it out.
Michelle Bishop:
Okay. what is it?
Stephanie Flynt McEben:
Yes.
Speaker 4:
Peaches? Like an ear of something? A slice of something?
Jack Rosen:
No. You’re thinking of…
Speaker 4:
Mozart?
Jack Rosen:
No. You’re thinking of the painter who cut his ear off.
Stephanie Flynt McEben:
No.
Jack Rosen:
Okay. What is Beethoven’s favorite fruit? I am stumped. Michelle, do you have anything here?
Michelle Bishop:
I got nothing.
Stephanie Flynt McEben:
For real? Both of you?
Jack Rosen:
You think…
Michelle Bishop:
Nothing.
Jack Rosen:
Was a conductor, A composer.
Stephanie Flynt McEben:
Okay. Do you want me to put you all out of your misery? Wait, you have a guess?
Jack Rosen:
No, I got nothing. You stumped me.
Michelle Bishop:
Absolutely nothing.
Stephanie Flynt McEben:
Okay. What is Beethoven’s favorite fruit? Ba-na-na-nas, ba-na-nas. No?
Jack Rosen:
Oh, that was good.
Stephanie Flynt McEben:
Did y’all get it?
Michelle Bishop:
I can’t decide if that was amazing or awful.
Jack Rosen:
My girlfriend just walked away, just experiencing too many emotions from that.
Stephanie Flynt McEben:
Oh, I’m sorry.
Michelle Bishop:
You broke her.
Jack Rosen:
I really, really liked that one.
Stephanie Flynt McEben:
I’m glad you like it.
Michelle Bishop:
It’s good. This is Jack’s episode, so it’s good that it was one that brought him joy.
Stephanie Flynt McEben:
That was my hope. I’ve been saving this one for like a month. Because I heard it and I was like, “Ooh.” I’m kind of shocked none of you said kiwi, because that was my first thought.
Jack Rosen:
Why Kiwi?
Michelle Bishop:
Yeah. Why kiwi? What?
Stephanie Flynt McEben:
Ki-wi? Ki, Beethoven.
Michelle Bishop:
That is such a stretch.
Jack Rosen:
I’m not getting it.
Michelle Bishop:
The key, like the key of.
Jack Rosen:
Oh, the key.
Michelle Bishop:
The key, like the key of.
Stephanie Flynt McEben:
Yeah, like a key. A, B, C, D, E, F, G.
Jack Rosen:
Well, I guess I have a joke.
Stephanie Flynt McEben:
Yes. I’m so excited.
Jack Rosen:
I’m thinking how to phrase this. Let me think.
Stephanie Flynt McEben:
Michelle, you got to come up with one too now.
Michelle Bishop:
No, I did my cat tuna fish library joke. And you guys didn’t like it, it was a classic. I used my best material on you guys.
Jack Rosen:
Oh, I think I know.
Stephanie Flynt McEben:
What is it?
Michelle Bishop:
Okay.
Jack Rosen:
What do you call putting out my Goodbye podcast two months after I’ve actually left NDRN? Incredibly on brand for us.
Stephanie Flynt McEben:
It really is though.
Michelle Bishop:
That’s fair.
Jack Rosen:
Yeah. Sorry folks. If you’re hearing this, I’m already gone and I am possibly wondering, oh my God, how am I going to make it through law school? What did I do? Or, I’m having the time of my life. We’ll find out. I’ll be back sometime in the future to let you know.
Michelle Bishop:
So sorry folks. He’s gone. You’re too late to say goodbye to Jack. But, if you want to be the new producer/pro host of our podcast, email podcast@NDRN.org, and we’ll consider your application. Jack, one last time since you’re no longer here. Do you want to tell the people where they can follow us on social?
Jack Rosen:
You can follow us on Facebook, Instagram, LinkedIn, Bluesky, Threads. If anyone actually uses Threads, I don’t know who does, but we’re on it. We’re on Twitter. I’m still calling it Twitter. I think we are maybe going to make a TikTok at some point, but-
Stephanie Flynt McEben:
Oh yeah, don’t we use that?
Jack Rosen:
But that is no longer my problem. So the other member of the comms team, that is their problem. But if we’re on TikTok by the time this episode is out, Alden, if you’re listening, you should add it to the show notes.
Stephanie Flynt McEben:
Alrighty. Well, until next time folks, this is not goodbye. This is see you later.
Michelle Bishop:
For Michelle and Stephanie because Jack’s already gone. Bye guys.
Stephanie Flynt McEben:
Bye.
We wrap up our series on the battle for the passage of the ADA with none other than Senator Tom Harkin. Senator Harkin was the lead sponsor of the ADA in the Senate and has spent his career being a steadfast ally to the disability community. In this interview we talk to him about what that was like, where we need to go from here, and he even stumps us with a bit of disability rights trivia.
Full transcript available at: https://www.ndrn.org/resource/ndr-harkin/
Michelle Bishop:
Welcome back to another episode of National Disability Radio. This is the final in our series on the anniversary of the ADA. So before we jump into a very special guest that we have for you this episode, I am one of your podcast hosts, Michelle Bishop, the voter access and engagement manager at NDRN.
Stephanie Flynt McEben:
And I’m Stephanie Flynt McEben, public policy analyst here at NDRN, and another host, or one of our other hosts, for our podcast today.
Michelle Bishop:
Okay. Clearly taking his side, Stephanie. Clearly taking his side.
Stephanie Flynt McEben:
Okay. Okay. But Jack has proven that he is worthy of host,
Michelle Bishop:
Producer and pro host extraordinaire, please introduce yourself.
Jack Rosen:
Thank you, Stephanie. I appreciate the support. Hi, producer and host, Jack Rosen, here. Really excited about today’s episode. This guest has been at the top of our wish list for a while now, and we are so thrilled to have him on. So I suppose we want to just get into it. Michelle, why don’t you tell the folks that we have on today?
Michelle Bishop:
We’re really excited today to be talking to the honorable Senator Tom Harkin, who was so instrumental in so much of the early disability rights movement and passage of the ADA. In 1974, Tom Harkin was elected to Congress from Iowa’s 5th Congressional District. In 1984, after serving 10 years in the US House of Representatives, Senator Harkin was elected to the Senate and reelected in 1990, 1996, 2002, and 2008. He retired from the US Senate in January of 2015.
I use the term retired loosely. He is still very active in the movement. As a young senator, Tom was tapped by Senator Ted Kennedy to craft legislation to protect the civil rights of millions of Americans with physical and mental disabilities. He knew firsthand about the challenges facing people with disabilities from his late brother Frank, who was deaf from an early age. What emerged from that process would later become his signature legislative achievement, the Americans with Disabilities Act.
In September 2009, following the death of Senator Ted Kennedy, Senator Harkin became chairman of the Senate Health Education, Labor and Pensions, or as we know it, HELP Committee. Senator Harkin believed that to serve in this capacity was to carry on the legacy which helped lead to the passage of the Affordable Care Act. In 2015, Senator Harkin and Ruth Harkin establish the Harkin Institute for Public Policy and Citizen Engagement at Drake University in Des Moines, Iowa to inform citizens, inspire creative cooperation, and catalyze change on issues of social justice, fairness, and opportunity. The institute works to improve the lives of all Americans by giving policymakers access to high quality information and engaging citizens as active participants in the formation of public policy. Senator Harkin, thank you so much for joining us today.
Jack Rosen:
So we’re sitting here today with Senator Tom Harkin for our series commemorating the 35th Anniversary of the passage of the ADA. This is Producer Jack Rosen. I am joined by my co-hosts, Michelle Bishop and Stephanie Flynt. And to kick things off, we wanted to ask you, one thing we’ve found when talking to some of the folks who were involved in the passage of the ADA is that they recalled that was quite a fight to get people with HIV, AIDS and mental illness, as well as substance use disorders covered at the time, especially being 1990 and there was a lot of stigmatization of people with HIV, AIDS. Could you talk a little bit about that fight and why it was important for you to make sure those groups were included?
Senator Harkin:
Well, yes, because we didn’t want to leave any element of a disability group out of the coverage of the bill, want to be comprehensive. You start carving out one group, then there’s somebody else will carve out somebody else and the thing falls apart. The HIV, AIDS thing came up because there was so much misinformation about AIDS and how people got it. And a lot of it, let’s face it, was based on homophobia at that time. And we had some purveyors in the country and in the Senate of that kind of discrimination. Former Senator Jesse Helms of North Carolina is predominant among that.
And so they tried to do whatever they could to carve out that portion of our populace. Well, we were successful in the Senate in keeping it out, but the House at the last minute added what was called the Chapman Amendment. Chapman was a congressman from Texas. I think that’s right, from Texas. And at the last minute they added the Chapman Amendment to preclude coverage of the ADA for anybody with HIV or AIDS. It wasn’t just AIDS, it was HIV too, a huge populace.
Well, as we pointed out at the time, everyone thought well, you only got HIV if you were practicing unsafe, same-sex. But we knew from medical studies and stuff that that just wasn’t so, it was absolutely not so at all. Well, Chapman Amendment came on at the last minute. Now keep this in mind, it’s a little bit in the weeds here on legislation. But we had passed our bill in September of 1989. It went to the House, got stuck in the House all winter until we had what was called the Capitol Crawl in March. After that, it began to get loosened up and we got it through the House, but not until the last minute the Chapman Amendment was at.
And so when we went to conference… Okay, so the Senate had one bill, the House had another bill. When we went to conference, the Senate voted to instruct conferees as did the house, to instruct conferees to accept the Chapman Amendment. Well, of course, I’m the head of the subcommittee. I’m the person leading the charge on this and negotiating with the house. And we met with the disability community. And basically, I’ll tell you, the disability committee held together. They said, “If they’re out, we’re out. We won’t have a bill.” They had worked for so long and so hard to get this done.
Well, so here’s what happened. We enlisted a person who had been sort of with us all along, but sort of dragged along kicking and screaming, and that was Senator Orrin Hatch of Utah. And finally, the disability community came to him and some people he knew in Utah and said, “Look, we can’t afford to let this bill die. We got to save this bill.” And so a few people came to meet with Senator Hatch and convinced him to have a substitute for the Chapman Amendment that basically said that in disregard of HIV, AIDS, et cetera, that we would rely upon the latest and best medical and scientific studies and results in order to determine the further course of action.
Anyway, it was just… got rid of the Chapman Amendment and substituted this language of we’ll take the latest scientific… And we sold it on that basis. We sold it to the Senate, even though they instructed them to accept the Chapman Amendment. We went back to them and said, “Look, this is a great compromise. Who can argue that we shouldn’t use the best scientific and medical information and data?” And that’s what we did, and that was the end of it. And so then the House went back and they passed it and it came back to the Senate and we substituted our bill, because we had some different things in it. So we took my bill, the bill we’d drafted and made it the final bill and sent it to the White House. That’s a long story, but it was very involved.
Michelle Bishop:
It’s actually one of my favorite stories, though, I have to say, Senator, about the passage of the ADA. It was such a moment in time and the way that the disability rights community really stood together-
Senator Harkin:
Yeah, you did.
Michelle Bishop:
… in a business where it would be very easy to say, “Okay, we’ll cut these folks out and we’ll get this for the rest of us.” The way the community really stood together and the way that you released stood your ground as well for what was right for people with disabilities.
Senator Harkin:
Well, I’ll tell you a little story that happened before, before the Chapman Amendment, but it was right about that same time. We still had some people in the disability community that were just… They wanted this, they wanted that, and I understood that. So I got Pat Wright and some others too from California. Who am I thinking of? I just lost the name in my… Anyway, Pat Wright was there from Oakland. Who am I thinking of? The Ed Roberts Center?
Michelle Bishop:
Yes. It’s actually the original independent living center in Berkeley, the Ed Roberts and the Rolling Quads and…
Senator Harkin:
What’s it called? It was called… There’s just been a disconnect between my brain and my vocal cords.
Michelle Bishop:
Sir, that happens to me frequently.
Stephanie Flynt McEben:
Yeah, same.
Senator Harkin:
Okay, back up. So Pat Wright, who had been with us from the very beginning, fighting for this from the outside, so I got Pat and I said, “Look, bring together as many in the disability community you can, and we’re going to meet in that big hearing room in the Dirksen building that I had jurisdiction over.” And it was like five o’clock in the afternoon and it was packed. Everyone was there. National Federation of the Blind, National Association of the Deaf, Cerebral Palsy, on and on and on and on and on and on. They were all there. And I had Bobby Silverstein with me. And Bobby was my staff director who really, really probably single-handedly was more responsible for the ADA than any other single person. So I said to Bobby, I said, “Look, get all these people together.” I said, “I’m going to lay the law down to them.” He said, “Okay.”
He didn’t really know what I was going to do. So we got all these people in the room and I said, “Look, we’ve been through a long fight. We’ve held together, but there’s some people that are holding out that haven’t quite got on board yet.” I said, “Look, I’m about to bring this bell out on the floor, but,” I said, “I’m not going to do it unless you all agree. Unless everybody here agrees and they’re not going to be sniping in the back about this isn’t in and that is.” I said, “Now look, it’s a little after five o’clock, I have to go attend to something. I’m going to leave Bobby Silverstein here in charge. And I’m going to come back, I’ll be back in about an hour and we’ll see. If you agree on what I’ve just laid out, I’ll be on the floor tomorrow with the bill. If you don’t agree, we’ll all go home and that’s the end of it. So I’ll see you in about an hour.” And I walked out. I left Bobby holding the bag.
Stephanie Flynt McEben:
Oh my God.
Senator Harkin:
But he was good. He was great. And so I did. I came back in about an hour and one by one, all these different groups were on board. “No, we’re not going to try to do anything in the back round. Yes, we’re…” And that was it. And then I got to take the bill on the floor.
Michelle Bishop:
That’s incredible. Well, our thanks to Bobby as well then for that work.
Senator Harkin:
Right.
Michelle Bishop:
Before we switched the mic on we were talking about all the unsung heroes of the ADA, and especially the people who do the drafting. Right?
Senator Harkin:
Yeah.
Michelle Bishop:
Somebody sits down and writes the language.
Senator Harkin:
Right.
Michelle Bishop:
And one of the things that strikes me about the ADA, in addition to being this really powerful moment in time for our movement, is that as folks who work in the disability rights movement now, the ADA itself is such an incredible piece of legislation. It was really built on, in my mind, a very clear record of discrimination against people with disabilities. And the bill itself I think is clear and specific and detailed in what it asks of us. It doesn’t just say, “You can’t discriminate. It has to be accessible.” It tells you what that means.
It charges agencies like the Access Board with creating regulations that are incredibly clear. And so for those of us who are doing the work these days, who rely so much on everything that the ADA lays out, and it’s certainly in an era of courts that really maybe look to limit its power somewhat, to me, the clarity and the specificity of the ADA is something that is really unique for a landmark piece of civil rights legislation. And I was wondering if at the time that you were doing this work, did you know how important that was and how unique this bill was? Or what is it to you that makes the ADA stand the test of time?
Senator Harkin:
Yes, we knew. We knew we were doing something that was both kind of profound, but also that we put in language that we thought would tell the courts what we really wanted to do. And of course, as you know, much of the provisions of the ADA are based on Section 504 of the Rehabilitation Act of 1973. Is that right?
Stephanie Flynt McEben:
Yes.
Senator Harkin:
Yes. 1973, right. And so we lifted a lot of language from that. And we had the help of person who had been involved with 504. Well, I’m sorry, I just lost a name. I see him in my mind’s eye. I mean, he’s still alive. I mean like me, we’re old and we can’t remember our names. So he was still there, and he came in and was very helpful on the language and putting it together with Bobby Silverstein, who was my staffer, a lawyer. Heifelblum, another lawyer, she was at Georgetown at the time. Arlene Meyerson, another lawyer out in San Francisco or Oakland there. DREDF, that’s the name of it. The Disability Rights and Education Defense Fund.
Michelle Bishop:
Yes.
Stephanie Flynt McEben:
Yes.
Senator Harkin:
That’s who Pat Wright was with, and that was sort of our organization on the outside.
Michelle Bishop:
I used to work for Robert Funk, who’s a disability rights attorney back at the time, who was part of the founding of DREDF as well. Yeah.
Senator Harkin:
But, he was with DREDF.
Michelle Bishop:
Yeah, yeah.
Senator Harkin:
So, yes, we knew we wanted to be more specific in the language, and we thought we were pretty specific. Again, we had different people meet with different senators and different staffs. And well, it worked out fine. Now, again, I must tell you that it came to quite a surprise to us in 1999, 9 years later, when the Supreme Court decided those three cases, we call it the Sutton Trilogy. There were three cases that decided in one day that just tore apart the ADA in terms of employment.
We were, I thought, quite specific in our findings. I remember I was at the Supreme Court the day they handed down the decision. I was there with Bob Dole, who was also a big supporter of ours and getting the ADA through. And I remember we walked out and met the press, and I remember Bob Dole saying, “Well, they said we didn’t have enough…” I think it was Scalia, maybe I forget who it was, said, well, we didn’t have enough data to support this or something. And Dole said, “Well…” Now again, don’t hold me to this figure. But he said, “We had like 200 specific instances of these violations. Now I wish they had’ve told us do they need 210? Do they need 220?”
Stephanie Flynt McEben:
227.
Senator Harkin:
So he was really poking fun at the Supreme Court. Well, because of that decision, it held up employment. Because the employers really didn’t know what to do and the people with disabilities who wanted to be employed didn’t really know what to do. I can get into that more if you want, but it’s kind of in the weeds. But it had to do with whether you self-identified as someone with a disability. If you did, were you still covered by the ADA?
It took us another almost nine years to get it corrected, and we worked through those years. And the second Bush came to office, he didn’t hold us up, but everybody got involved in 9/11 and the war in Iraq, and just one thing after another. But finally in 2008, his last year in office, we got it through, and that was the ADA Act Amendments of 2008, which told the Supreme Court, “Here’s what we meet,” basically.
Michelle Bishop:
Right.
Senator Harkin:
And so we redrafted some portions of the ADA to make it quite clear what it is we meant. And since that time, we’ve had a clear course on this whole idea of employment. That’s one of the reasons why employment was set back so far. I mean, we went for… Well, you figure that was 2009, that’d be 19 years? 2008, so 18 years. Am I right? Yes, that’s’ right, 2008.
Michelle Bishop:
Yes. I had to think about it too.
Senator Harkin:
So we basically went 18 years without really having a clear delineation and upholding of court decisions on employment. Just held us. We did all right on transportation. We did okay on an independent living with the Olmstead Decision and other things like that, but employment was held up back… And in 18… that was ’08, by the time we got the new rules drafted, you’re talking about 2010. So it set us back about 20 years on employment.
Michelle Bishop:
I know Stephanie asked something she wants to ask you about, but I got to jump in real quick. I just wanted to say quickly, I’m so glad you mentioned Senator Dole because we often find that really champions of disability rights issues come from both sides of the aisle.
Senator Harkin:
That’s true.
Michelle Bishop:
That it’s not so much a partisan issue as it is if you are a person with a disability or you love someone with a disability, you see how it impacts people’s lives and you just get it.
Senator Harkin:
Right.
Michelle Bishop:
And that’s been, to me, something that just makes disability rights such a unique space to work in.
Senator Harkin:
Yeah.
Stephanie Flynt McEben:
And just to add on to that, disability is the characteristic that affects one in four Americans. And also anyone can become a member of the disability community at any time. It intersects with every single minority group. I know I’m preaching to the choir here, but that’s definitely something.
Senator Harkin:
Right, yeah. Yes, exactly right. You can become a member of the disability community at any point in time. And as some of us grow older and we can’t hear worth a darn, now we’re finding out that we have to lean on a lot of things for closed captioning and things like that.
Stephanie Flynt McEben:
Yeah. No, for sure. For sure.
Senator Harkin:
I have to give you another little bit of a thing. I know you’re talking about the ADA.
Michelle Bishop:
Yeah.
Senator Harkin:
Before the ADA passed, I got another bill through. Now people always say I’m the author of the ADA and all that, but I don’t say that. People say that, but I don’t say that. I always say the author of the ADA were the many thousands of people with disabilities that marched, that laid under the wheels of the Greyhound buses, that got arrested and thrown in jail, and then the staff and everybody. Did I have a hand in it? Yeah. I’m the lead sponsor, so I was the person that brought it through legislatively and got it passed. Okay, fine. I accept that. But there was one bill that I was the author of and got it through my committee and got it through the Senate and the House and got it signed by the president, that really changed a lot. And no one knows I ever did it. It was called the Television Decoder and Circuitry Act. I bet you’ve never heard of it?
Michelle Bishop:
No.
Jack Rosen:
I don’t think I have.
Michelle Bishop:
I was like, “He’s not going to stump us. We do this for a living.”
Stephanie Flynt McEben:
Yes.
Michelle Bishop:
And then you did.
Senator Harkin:
You can look it up. I forget the public law number of it. But the Television Decoder and Circuitry Act, I had hearings on it. Here’s what happened. I had a brother who’s deaf, and so I got involved in the late ’70s and early ’80s in establishing the National Captioning Institute out in Alexandria, Virginia. And while I was only peripheral to the other aspect of the television stations’ networks making agreements to have certain programs captioned, in order to get the captions you had to buy a box. There was a big set top box, like a VCR you put on your television. You hooked it up.
Stephanie Flynt McEben:
Oh wow.
Senator Harkin:
And if the program had been re-recorded, then you could see the captions. Well, so I got the first TV decoder like that, was delivered to Jimmy Carter in the White House by me and Senator Jennings Randolph of West Virginia. Okay, so I got my brother one and put on the TV out in Iowa, and he could now watch programs. Some of the early programs like the Ed Sullivan Show. It was always done before an audience, but not live. It was an audience and then you would see it on television. And then there were other programs that were done and then shown later, but not in front of an audience. Okay?
Michelle Bishop:
Mm-hmm.
Senator Harkin:
You could get those captioned by the National Captioning Institute. So my brother got this box and he started watching this, fine. Along about the late ’80s, I’m now in the Senate and I get a visit paid by an individual who said, “We now are developing these computer chips. And all that stuff in that big box you have that Sears Roebuck sold…” You can only buy it from Sears, and they agreed to sell it at cost, and it was expensive, $279 at that time.
Stephanie Flynt McEben:
Wow.
Jack Rosen:
Oh wow.
Michelle Bishop:
Wow.
Senator Harkin:
That was expensive. So they said, “All this in it, we can put it on a computer chip like size of your thumbnail.” I said, “Really?” “Yeah.” I said, “Well, I got to find out more about it.” I had hearings from my disability policies, my subcommittee. So I had hearings on this. And I’m just a freshman senator, but Kennedy had agreed to give me this disability subcommittee called the Subcommittee on the Handicapped. So I had these hearings. I brought in the TV manufacturers. I remember it was Motorola, Sylvania, some of the other ones, maybe… There were a number of US manufacturers of TVs. I don’t remember if Sony… I’d have to go back and check. They may not even have been around at that time. I don’t know.
Michelle Bishop:
No idea. That’s a good question.
Senator Harkin:
So my ask was, “I understand we can…” “Yeah. Well…” They looked at, “Yeah, you could put all that in a TV set.” But here was the catch, but it’s going to cost anywhere from 100 to $200 more per TV to do that. Well, so I checked with my staff and they said, “You can’t get a bill through that’s going to increase the cost of a TV set by a couple of hundred dollars.” So I called in this friend of mine in the chip business. I said, “Well, is it really going to cost that much?” And he said, “Yes, if you make 10 of them or if you make a hundred of them, but if you were to make millions of them, why the cost would almost be nothing.” It’s like a light bulb went off in my head.
So I drafted a bill to mandate that every television set sold in America, not made here, sold in America that had a size 13-inch screen or bigger… Now, don’t ask me… There was some technical problem in doing it smaller than that with the captions.
Stephanie Flynt McEben:
Interesting
Senator Harkin:
Every television set sold in America size 13-inch screen or… had to have embedded in the television set itself this decoding chip, and I got it through.
Michelle Bishop:
Can I also thank you as someone who watches everything with the captions on.
Senator Harkin:
I know.
Michelle Bishop:
I don’t even have hearing loss. I watch everything with the captions on.
Stephanie Flynt McEben:
My spouse is the same way.
Senator Harkin:
Well, we got it through, and we had a phase in period of several years. And what happened is J.W. Marriott Hotel… There was someone in his family who was disabled. I had a conversation with him at that time with J.W., Bill Marriott, I think. Was it Bill? I forget, one of them. Because they decided, not that they had to, it wasn’t part of the law, but they decided to take out all their TVs and all their hotels and replace them with TVs with these computer chips and use it as a marketing tool.
Michelle Bishop:
Wow. Awesome. That’s a great idea.
Senator Harkin:
Which they did. And of course, once they did that, then Holiday Inn and a Hilton and everybody… So there was this big rush to buy all these TV sets with these computers chips in them. And that happened. And years later, I remember I had a hearing on this and asked what the additional cost was for the chip. It’s not even factored in the price.
Michelle Bishop:
Wow.
Senator Harkin:
It’s just part of the internal operations. All the other things they’ve done with smart TVs and all, well, yeah, that’s factored in the price. But the computer chip isn’t, is so that’s why you have a remote and you can get the closed captions and all that kind of stuff. So there you go.
Stephanie Flynt McEben:
Really? That’s amazing.
Senator Harkin:
There you go, long story.
Michelle Bishop:
Okay. We led you all around. We led you all around, Stephanie, but I actually know you wanted to ask about technology anyway, so it might be a nice segue.
Stephanie Flynt McEben:
Yeah, I was going to say that is a really good segue. Talking a lot about technology and the ADA and the efforts around the captioning devices. The ADA was written in a different era in regards to technology, and of course addresses the technology of its time and how those things go about. And of course, in 1990, I’m sure we couldn’t have imagined a world with smartphones and Amazon Prime-
Senator Harkin:
No.
Stephanie Flynt McEben:
… all of these things, the AI, all of this technology that’s around. So how do you think that the ADA needs to be adapted to today’s tech?
Senator Harkin:
Well, my short answer it has been adapted. I mean, the language and the way we drafted it, I think has been very well incorporated in the new technological world. I mean, I may not see what is happening there that I don’t know about. Maybe you do, I don’t know. But I think technologically we have pretty much… I think the ADA pretty much has stood the test of the time on that. I’m trying to think of some instances where we had problems. Do you know of any?
Stephanie Flynt McEben:
Yeah. So I think something that I’ve heard in various circles and in doing this work, it’s true that the ADA is enforceable when it comes to technology. But because of the fact that technology has just continued to evolve more and more and more over time, there’s been various guidance and that sort of thing that’s been issued in order to keep up with the times. And so I think that that’s kind of with the evolution of technology in mind, if that makes sense.
Michelle Bishop:
And we came to meet you today by using a smartphone app to call a car to come pick us up, which-
Stephanie Flynt McEben:
I feel like in the ’90s would you-
Michelle Bishop:
… that is a different world.
Stephanie Flynt McEben:
Would people have done that in 1990, requested a random car to come and pick you up versus a cab company?
Michelle Bishop:
But it opens up a whole new industry of people’s private cars or private homes being kind of a part of business now in a way.
Senator Harkin:
Now, you’ve jogged my thinking a little bit here. There has been over the last few years, a focus on making the ADA adaptable to programming and to software development and software design. It’s not so much just the hardware, but the software needs to be accessible for people with different accessibility problems.
Stephanie Flynt McEben:
Yeah, absolutely.
Senator Harkin:
And so we have been working with the Accessibility Board, I think it’s called.
Stephanie Flynt McEben:
The Access Board?
Senator Harkin:
And with getting some national standards on making sure that software at the very beginning [inaudible 00:31:02] incorporates within the software accessibility standards for people who have a learning disability, for people who may have an intellectual disability, for a person with cerebral palsy, for example, who has a hard time navigating boards and things like that and needs a different type of a device. For example, software that will allow a person with a pointer… They put it on their head. Maybe you’ve heard about these?
Stephanie Flynt McEben:
Yes. Yeah.
Senator Harkin:
They’re fantastic, but the software has to… All of the software that you might access that way has to be accessible for that kind of technology.
Stephanie Flynt McEben:
Right, right. Yeah.
Senator Harkin:
So that has been something that obviously we didn’t think about in ’90, obviously.
Stephanie Flynt McEben:
Well, of course, I mean, there was no way to know, right?
Senator Harkin:
But through court cases, we have developed the law that’s pretty good on this. I often liken it to this, that when our framers drafted the Constitution, they drafted… As you know, one one of the provisions of the Constitution as a provision against illegal searches and seizures. Your house is your castle. They can’t just go into your house and search through your drawers and stuff like that without a court…
Michelle Bishop:
Without a warrant.
Senator Harkin:
… warrant for something. Well, television or telephones weren’t around then. So when telephones came in later, could they tap your phone, huh? Well, it wasn’t in the Constitution.
Michelle Bishop:
Right, yeah.
Senator Harkin:
But there was a court case that said, “Well…” It’s the same thing. It’s basically the same. And so that has evolved. So that same kind of court adapting what we wanted to protect or do in the beginning changed by technology, they just adapted it to the new technology. That’s our hope on these court cases that a lot of them… aside from the Sutton Trilogy in 1999. But once we corrected it, that was it, it’s worked ever since. The court had a very… And maybe we weren’t clear enough. I thought we were, but maybe we weren’t.
Stephanie Flynt McEben:
No, I think that that makes a whole lot of sense. And I just thank you so much for your leadership on that. And, again, there’s just no way that we could have known what the technological future held.
Senator Harkin:
No.
Stephanie Flynt McEben:
And I think that the link to the Constitution and the phone tapping is a really good example. So thank you for sharing that.
Senator Harkin:
Right. Well, the next big thing is AI.
Michelle Bishop:
Right, right.
Stephanie Flynt McEben:
Mm-hmm.
Senator Harkin:
Now, is AI going to be accessible and adaptable for all persons with disabilities? Well, tomorrow there’s going to be a presentation by Beacon College on their use of AI for all their kids with disabilities. It’s pretty darn interesting.
Stephanie Flynt McEben:
Interesting.
Senator Harkin:
I had a preview of it because I visited the school. But AI could be very, very helpful. But, again, is it designed and are the algorithms that incorporate it encompassing a person with a learning disability or a physical disability, cerebral palsy or anything like that, a person with blindness or deafness or whatever? Are those algorithms going to be able to pick up on that and make sure whatever the AI you’re using or trying to use understands it has to be presented in a certain way, a certain way that’s accessible.
Stephanie Flynt McEben:
Fully accessible to all people. I think that that just speaks to the timelessness of the ADA too.
Senator Harkin:
You know you’re right. I got to tell you, sometimes I’m amazed at how adaptable the ADA and the language we used… I don’t know that we really thought that much about, “Oh, we’ve got to anticipate the future and this and that.” I mean, a little bit of that came around, but there was no such thing as a smartphone.
Stephanie Flynt McEben:
Right.
Michelle Bishop:
Right.
Senator Harkin:
There’s no such thing as smart TVs or nothing like that.
Michelle Bishop:
And if we had guessed in 1990, we probably would’ve been thinking about the flying cars from the Jetsons and not smartphones. Right? We probably would’ve gotten it wrong.
Senator Harkin:
That’s right. That’s right. But, yeah, I can’t say that we were prescient in some way. I don’t think so. I think we were just trying to nail it down as best we could.
Stephanie Flynt McEben:
Of course. Yeah.
Senator Harkin:
Yeah.
Jack Rosen:
I think that sort of transitions nicely. You mentioned the presentation that’s going to take place tomorrow. And obviously the fight for equality for people with disabilities didn’t end at the ADA and your work in this space hasn’t ended. So I was just wondering if you could tell us a little bit about the Harkin International Disability Employment Summit and the work you’re doing here today?
Senator Harkin:
Well, yes, the International Disability Employment Summit, we started in 2016. I retired in 2015, January of 2015, and we had started the Harkin Institute at Drake University. And as 2015 went through… Again, I made sure when we drafted the ADA, we put in the titles that Title 1, the first one is employment because I always felt that was sort of key, jobs, employment. Well, we’d gone through all that 20 years with the Supreme Court’s decisions, 2010, it’s now 2014, and we just had not hardly made a ripple in employment. So I wanted to focus on that.
So the first summit was in December of 2016. Yes, December. Either late November, early December of 2016, and that was it. We wanted to do it internationally because we also wanted to rely on the CRPD, the Convention on the Rights of Persons with Disabilities for other countries. And so that was it. That was it. There’s a lot on disability rights you can focus on, and we do some of that at the institute, but I wanted this to be focused on increasing employment in competitive integrated employment for persons with disabilities. And as I said today in my opening, I said, “We laid a marker down.” At that time I said, “In 10 years, I want to double the rate of employment for specific… I mean for you. I mean, if you have a business and you employ two people with disabilities, make it a goal that in 10 years you’re going to have four people. If you’re a big company and you got 2% of your employees are people with disabilities, make it 4% in 10 years.” It’s not a heavy lift, but I wanted to keep making progress forward.
And so that’s still our goal to keep doubling the rate of employment among small businesses, against all businesses. And that’s what we’ve tried to do, to bring these… And what are the best practices? What are their hurdles? What are the problems? What are some people doing that are unique? We just had a presentation just before I came here for this podcast by Apple. I didn’t realize Apple was doing what it’s doing. It’s fantastic on how they’re getting their suppliers, not just Apple, but their suppliers to do more hiring of persons with disabilities. Wow.
See, so there’s a lot of these kind of things happening out there. And that’s what we’re focused on, employment. And we’ve had two foreign engagements. We did one in Paris, France, which was well attended by African countries and some Mideast, European. And then we did the one in Belfast, and then in 2023 we were set up to do one in Amman, Jordan. Prince Murad has been to all of our summits and he wanted to host one in Jordan, which we thought would be great. But we had to cancel it at the last minute because of problems in the Mideast and travel and things like that. So we missed in ’23 then we’re back here in ’24 and we don’t know where we’re going to be in ’25 yet. We’re looking some different places.
Michelle Bishop:
If we can trouble you with one more question.
Senator Harkin:
Yeah.
Michelle Bishop:
Well, first, I assume you use the word retirement loosely. Sounds like you’re still fairly busy.
Senator Harkin:
I am. I do, yes.
Michelle Bishop:
We’ve talked so much about the history of the disability rights movement, and I’m wondering what you think when you look towards the future, what are maybe some new challenges on the horizon as well as do you see any new disability rights champions who are ready to pick up the torch and continue this work?
Senator Harkin:
First question, there’s one thing that I’ve just been trying to get done and haven’t, it’s been a great failure and that is to get housing built in America that’s accessible. Do you realize we now have a whole industry in America, they come to see me, a whole industry that will fix up your house when you get older so you can stay at home? Why the hell didn’t we build it that way in the first place? It’s much cheaper when you do it that way.
Michelle Bishop:
Absolutely.
Senator Harkin:
I have been proposing for some time now, but I just can’t get anyone to do it, and it’s this, what is one of the biggest factors in homeownership in America? The biggest single factor, aside from price of course, the biggest single factor is the fact that you can deduct from your income taxes the interest paid on the mortgage that you have. You buy a hundred thousand dollars house, you put $10,000 down, the other $90,000 you’ve mortgaged. And what is up front? The interest. If you ever look at the diagrams, you’re paying just interest and interest and interest for years and years for 20 or a 30-year mortgage, and finally at the end you start paying on the principal. All that interest is tax-deductible. That’s a federal law.
What I’ve been advocating is that for you, for an individual, to get that tax deductibility to purchase a home, that home must meet accessibility standards. Then builders will start building houses where people will buy because if they don’t, they won’t be able to deduct their mortgage payments. So I’ve been trying to get this change made to get housing that is accessible from the very beginning, housing, apartments, condominiums. And as we know, the added expense is not that much in the beginning. It’s when you come back later and try to redo it, that’s what costs money. To me. This is one of the last great frontiers in America.
I spoke with a young woman not too long ago in Washington D.C., she’s a professional person. Told me it took her almost three years to find an apartment in D.C. that was accessible for her. She uses a wheelchair and some other devices. She just couldn’t find it. I mean, she just couldn’t find what she wanted. What do I think? The number of those were so little. You know?
Michelle Bishop:
Mm-hmm.
Senator Harkin:
Anyway, so that’s one that I just I don’t know why. And here, Biden and Kamala Harris came out, “Oh, they’re going to have all this new money. We’re going to build all this low-income housing and stuff.” Not one word about we’re going to build low-income housing and it’s going to be accessible to all people with disabilities. Nothing. Nothing. I mean, I don’t know how I get through on some of this stuff. As you can see, it just frustrates me.
Anyway, as you can see, I still think there are some barriers, a lot of barriers that we’ve got to overcome in that way. Transportation, we’re finally getting airlines… And this is a kudos to the Biden administration and to Pete Buttigieg. They finally did get some standards out for seating in airplanes for people with disabilities. Daniel Van Sant, who you’ve met here, who’s the head of our disabilities…
We’re losing Bob Casey. But, yes, there are Maggie Hassan, Senator Maggie Hassan, Tammy Duckworth from Illinois. Those are two big champions right there.
Michelle Bishop:
Senator, you gave us so much of your time today, we appreciate it.
Jack Rosen:
Thank you so much.
Stephanie Flynt McEben:
Thank you so much.
Senator Harkin:
I forgot, I got to get my rear end out of here.
Speaker 5:
That’s why I’m here.
Michelle Bishop:
You gave us so much of your time, we appreciate it so much.
Stephanie Flynt McEben:
No, it’s totally fine. Thank you so much, Senator.
Senator Harkin:
Thank you. Thank you. Thank you. See you, bye.
Jack Rosen:
Thank you, Jack.
Speaker 5:
Your dog is beautiful.
Stephanie Flynt McEben:
Thank you.
Jack Rosen:
Wow, that was so cool. I cannot believe we got to speak with Senator Harkin. I cannot believe we got to speak with him for that long. I’m not even sure what to say. It’s so exciting that we got to speak with him and hear about what it was like as a legislator while these fights were going on to pass the ADA, and to just learn a bit more history about it wasn’t… As much as we focus on the ADA, there is other legislation that is that people are always… We often hear, “Isn’t that an ADA violation?” Sometimes it is, but as he pointed out, sometimes there are other disability rights laws that are protecting people.
Stephanie Flynt McEben:
Right? I mean, honestly, all I can say really is… Sorry. No, Jack. I could not agree more. It was an incredibly moving interview. He is incredibly down to earth, and I genuinely am so grateful for the time that he gave us. And he’s just such a down to earth guy. I really enjoyed talking with him and learning the history and just hearing his perspective on everything going on, ways that we can improve the ADA today and just in general the advocacy that it took on both sides to make the ADA what it is.
Michelle Bishop:
Truly. Senator Harkin, thank you so much for letting us crash the Harkin Institute this year, for all the time you’re willing to sit down and talk with us about your achievements, for everything you’ve done for the disability rights movement, and most of all for laughing at all of our bad jokes.
Stephanie Flynt McEben:
Yes. And speaking of jokes…
Michelle Bishop:
Oh, we know you have one, Stephanie.
Stephanie Flynt McEben:
Yes, I do. And it’s actually kind of on theme for this episode, so I’m kind of proud of myself. Anyway, what did the ramp say to the stairs?
Jack Rosen:
What did the ramp say to the stairs?
Michelle Bishop:
What did the ramp say to the stairs?
Stephanie Flynt McEben:
I don’t know, but you guys have to guess. I do know, but…
Michelle Bishop:
We had one easy one recently.
Jack Rosen:
Right? I think I got it.
Michelle Bishop:
Go on.
Jack Rosen:
I’ve got you covered.
Stephanie Flynt McEben:
Nope, that’s a good one, but no.
Michelle Bishop:
That’s a good answer. Okay. What is it?
Stephanie Flynt McEben:
Step aside. Get it?
Michelle Bishop:
Oh, yeah. No, I got it.
Jack Rosen:
Hey, that’s an appropriate one.
Stephanie Flynt McEben:
It really is though. I was so proud of it.
Michelle Bishop:
It was. That is a great joke for the anniversary of the ADA, and I hope that Senator Harkin is laughing at that one very hard.
Stephanie Flynt McEben:
I feel like he would.
Michelle Bishop:
Unlike me and Jack. Thank you everyone for joining us for our series on the anniversary of the ADA. We were really excited for the ADA’s birthday this year, and it was amazing to get the opportunity to talk to several people who were just instrumental in the drafting and the passage of the ADA who shared their experiences with us and talked about the future of the movement. We appreciate it so much. Jack, tell the people where they can find us on social media.
Jack Rosen:
You can find us on Facebook, Instagram, LinkedIn, Twitter, Bluesky, Threads. I’m forgetting one, aren’t I? Facebook, Instagram, LinkedIn, Twitter, Bluesky, Threads. Oh, yeah, we also have a YouTube channel, follow us there.
Michelle Bishop:
Not TikTok.
Jack Rosen:
Not TikTok.
Michelle Bishop:
Okay, got it.
Jack Rosen:
And as always, you can email us at podcast@ndrn.org. Until next time folks.
Stephanie Flynt McEben:
Bye.
On part two of our series commemorating the fight for the passage of the ADA, we have on long time activist Jim Dickson. Jim talks with us about the challenges they faced in getting the ADA passed, what changes he’d still like to see, and surprises us with a fun story about a former guest and friend of the podcast.
Full transcript available at: https://www.ndrn.org/resource/ndr-jim-dickson/
Jack Rosen:
You know, Michelle, we feel like this part of your life is more mysterious. What was living in St. Louis like?
Okay, started that wrong. I’m trying to just get you to give us some St. Louis trivia. Mysterious was the wrong choice of word there.
Michelle Bishop:
Mysterious? Is it the biscuit?
Jack Rosen:
I wanted you to talk about the spaghetti and chili. That’s what I’m trying to get to, and I didn’t know how to get there.
Michelle Bishop:
I don’t know anything about that. I don’t even know what you’re referring to.
I do know there’s definitely fish fries every Friday, and it’s always fried catfish with a side of spaghetti, if that’s what you’re thinking of.
And we invented toasted ravioli, and most things that matter, like ice cream cones were invented at the 1904 World’s Fair in St. Louis.
And there’s St. Louis-style pizza, but it doesn’t have mozzarella on it. It has Provel cheese, which is I’m pretty sure only exists in St. Louis.
And pretty much everyone has some sort of connection to Nelly or Nelly’s mom. That’s about it.
Jack Rosen:
You know what? I was thinking of Cincinnati.
Michelle Bishop:
Gotcha. I gave all that, and you were thinking of something from Cincinnati.
Stephanie Flynt McEben:
Is Cincinnati famous for its pizza?
Michelle Bishop:
Is Cincinnati famous for-
Stephanie Flynt McEben:
For anything? No offense to any Cincinnatians.
Michelle Bishop:
Shout-out to Disability Rights Ohio. We love you.
Stephanie Flynt McEben:
Yas.
Michelle Bishop:
Our bad. Our bad. I was just in Cleveland. It was cool.
Do you not know Midwestern cities, Jack? Can you not tell them apart? Is it all the same to you once you get past like Buffalo?
Jack Rosen:
Well, then there’s Los Angeles on the other side of the country.
Michelle Bishop:
Hi. Welcome back to National Disability Radio. I’m Michelle Bishop, one of your co-hosts and the voter access and engagement manager at NDRN.
Stephanie Flynt McEben:
And I’m Stephanie Flynt McEben, public policy analyst, and also one of your hosts for this wonderful podcast here at NDRN.
Michelle Bishop:
And then we also have a producer, who’s just a producer. Why don’t you tell them hi, our producer?
Jack Rosen:
Hi, Jack Rosen here, one third of the podcasting team, as you know, a host.
Michelle, do you want to tell the people who we have on today?
Michelle Bishop:
Yes. This is a continuation of our series on the anniversary of the ADA, and allow me first to say, Go ADA. It’s your birthday. Go ADA. It’s your birthday.
Okay. I’ve been wanting to get that out since the last episode for the ADA, so thank you for humoring me.
So this episode, we have Jim Dickson. He has over 30 years of experience with nonpartisan voter engagement work, particularly in the disability community. He served as the co-chair of the Civic Engagement and Voting Rights Committee for the National Council on Independent Living.
He is a former vice president for organizing and civic engagement at AAPD, the American Association of People with Disabilities, where he led AAPD’s Nonpartisan Disability Vote Project, a coalition of 36 national disability organizations, whose mission was to close the political participation gap for people with disabilities, focusing on nonpartisan voter registration, education and get out the vote.
He actually played a central role, along with the leadership conference on Civil and Human Rights, in passing the Help America Vote Act of 2002, and he was part of the leadership team, which passed the National Voter Registration Act, which you probably call Motor Voter.
He’s the past chair of the board of advisors of the United States Election Assistance Commission, and prior to joining AAPD, where he was for a long time leading this work, Jim organized the campaign to place a statue of President Roosevelt in his wheelchair at the FDR Memorial and the National Mall in Washington, DC.
He has a long history of grassroots organizing with multi-issue organizations all over the country. I know definitely in Rhode Island, Connecticut and also in California, so that covers three states Jack has probably heard of. And with the support of the Sierra Club, he organized the first grassroots congressional mobilization for the environmental movement, which resulted in the passage of the first Clean Air Act.
So Jim has a long history of civil rights work and grassroots organizing, but if you know him, you probably know him for his leadership with the disability vote work. That’s how I know Jim, who’s actually been a mentor of mine for a long time. Welcome him to the podcast.
Jim Dickson:
So Justin Dart really used his appointment to the President’s Committee on Employment of People with Disabilities to lay the groundwork for the ADA.
He and Yoshiko, his wife, went around to every state, held a public meeting and prior to going, they sent out emails saying, “Sit down for a few minutes and write down all of the experiences of discrimination that you experienced.” I don’t remember whether he said in the last week or the last month.
And then in every state, they held a hearing, and people stood up and said, “I experienced discrimination because I got in an elevator, and there was no braille on the buttons, and I had to go to four floors before I got to the right floor.” That was turned into a report to Congress, and that report was used for Congress to hold hearings.
The hearings were fascinating, very important. This whole process, which took years, was really the first time that anything approaching the cross-disability community existed. The blind, we were off doing our stuff. The ARC was doing their stuff. There were a few organizations like Nickel and NDRN who were cross-disability and active in more than one disability silo. But the struggle to pass the ADA really eliminated those silos.
And it was really interesting both first for me, because I had never thought that the lack of a braille button in an elevator was an act of discrimination. I just thought it was a pain in the ass. And many of us began, because of the way Justin and Yoshiko framed the discussion, we really began to think for the first time in terms of civil rights, is this a discriminatory structure or situation statement?
And some people got that very quickly. But I think for much of the community, not the advocates, not the lobbyists, but for the rank and file, I would say it took a good year for that perception of accesses to civil rights to really be absorbed emotionally and intellectually by much of the rank and file.
Simultaneous with Justin and Yoshiko’s going around the country and collecting stories and giving a report, Evan Kemp and his partner played bridge with George Bush and Barbara Bush. They were social peers, class, old aristocratic families. And Evan got, between the shuffling, would talk about discrimination that he felt and experienced. And Evan graduated fourth in his class from Harvard Law, at the time walked with crutches and did not get one single offer from a major law firm to come and go to work, totally because using crutches, he was perceived as somehow less competent.
Pat Wright with CCD, Consortium for Citizens with Disabilities, formed a strategy committee. And again, there would be 20 to 30 people at every meeting representing 20 to 30 different organizations, different segments of the community.
And in the initial stages, there was a lot of talk about if you weren’t blind, the fact that there wasn’t braille on the buttons or an audio announcement on the elevator never occurred to you. So there was a lot of sharing of this experience and recognition that it was discriminatory and a violation of civil rights.
And I can’t emphasize enough that the concept of it being a civil rights violation was just stunning and extremely powerful prior to this whole conversation. Those of us who had jobs, careers, when we faced a barrier, our attitude was, “I got to find a workaround. I got to fix this. I got to find a way for me to operate in light of this barrier.” Very, very few of us talked or thought in terms of this barrier is a violation of my civil rights. So the most exciting thing about the process of passing the ADA was meeting with people with different disabilities, sharing our stories.
And while there would be meetings in DC, led by Pat Wright and Curt Decker, the then director of NDRN, was very important in the whole process, there were meetings with members at the grassroots level, in the beginning mostly with the staff and a few places with the members. I won’t go into the lobbying strategy and the fact that the committee, the Congress, divided the bill up and had it heard in four different committees, two in the House, two in the Senate, that required a lot of fancy footwork.
What was a very important strategic decisions that, in retrospect some of us regretted that we made, was a decision that we had to exempt the churches because the conversation went something like, “We’re picking a fight with business, we’re picking a fight with state and local governments, with school boards. We can’t fight everybody. Let’s not take the churches on, too.”
And that was thought through, essentially agreed to. I was one of the minor voices who said, “Yeah, we should not take the churches on.” In retrospect, I’m not sure that was the right decision, but it was made. I guess I’ll move to the signing.
Michelle Bishop:
Before you do that, Jim, can I ask you a couple of questions? This is fascinating, like this just has my gears turning.
Well, first and foremost, the decision not to take on the churches. And now so many churches are polling places, and you and I spent our whole careers, Jim, being tortured by inaccessible polling places in churches.
But I was thinking about, it’s really fascinating to me that a lot of people with disabilities didn’t think of some of those things that had always been a pain in the butt as a violation of your civil rights, and how much that has changed since the ADA has become law. That really that framework for looking at the world is this isn’t just a pain in the butt thing that I have to deal with. This is a violation of my rights. We could’ve have built this differently from the start, and I think that that’s really interesting.
Jim Dickson:
Yeah, and it was really important. It was an emotion. And I want to emphasize that wasn’t just a change in the way of thinking. It was a change in the way we felt about ourselves. It was a very emotional and, therefore, difficult change. But once people felt “You’re screwing me, and it’s not right, and it’s a violation of my civil rights,” that psychic, emotional, almost spiritual change was really essential to the passage of the ADA.
There was lots of fancy lobbying footwork. It was people would list members of Congress, and it was okay because just about every member of Congress, somewhere in their life circle at home, had a relationship with somebody with a disability. And a lot of the lobbying was built around which member has a connection with which part of the disability community, and then getting the grassroots in that state or congressional district to be the ones who went in.
So a lot of the initial contacts at the grassroots level wasn’t a broad coalition, though that happened in some places. It was more somebody known to the member where there was a relationship and a conversation about barriers equal civil rights violations. And they were, in general, I sat in on a couple of those conversations and I heard members say, “You know, I never thought of it that way, but I can see that.”
Michelle Bishop:
I feel like some of that is still so true today. It’s people who have a personal connection to disability who get it.
Jim Dickson:
Yep.
Michelle Bishop:
I think that’s really still true of disability champions and the work that we’re doing.
But I wanted to ask you about one more thing. This is something I’ve always heard through legend about the fight for the ADA.
You talked early on about that kind of breaking down of the divisions and there being like a disability rights movement, a community that’s kind of cross-disability. And I had always heard that it took several years to get the ADA a passed, which is not uncommon, especially for a really big, really important bill. But that there were points in the negotiation process where if people with disabilities had agreed to exclude some of the more, at the time, controversial folks, like people in recovery from drug addiction and particularly in the late ’80s, people who are HIV positive, that there might have been quicker passage of the bill.
I’ve always been told, through legend, people with disabilities refuse to do that and said it has to be all of us, and the bill eventually passed with all of us. Can you talk a little bit about that?
Jim Dickson:
Yes. Addiction was not universally seen as a disability. We saw it that way, but not everybody in the community did. And there were lots of conversations about, “Well, somebody’s a drunk, do they need to be protected, too?”
There was also a lot of less frank conversation, but discomfort around should this apply to people with developmental disabilities? What about people with psychiatric problems? We can’t change society’s attitudes and fears about psychological disabilities, but they’ll use that to try to defeat us. And the conversations were they’re going to try to divide and conquer, and it’s got to be all of us or none of us.
And again, that process took a while to work through at the national level, but it also, simultaneous with the national conversations, was going on at city and state levels all across the country.
And I do think that one real benefit, well, one unforeseen positive consequence from the passage of the ADA is it did play an important role in shifting away from the superstition and bigotry aimed at people with psychiatric, developmental and substance-related disabilities. It wasn’t necessarily a major objective, but I think it played a major role in forcing a national conversation about each of those constituencies.
Michelle Bishop:
So what was it like to be at the signing of the ADA after, I think it was what, a seven, eight-year fight for this bill? And it’s such a landmark piece of civil rights legislation, so comprehensive. It just must have been a really powerful moment to be there with all of those leaders in the White House then.
Jim Dickson:
Well, and a couple of things, the leadership, Justin, Pat Wright, Curt, Evan basically said to, and it was Evan’s relationship and Janine, his partner’s relationship with the Bushes. And I said, “We don’t want a little signing in the Rose Garden. This is a major piece of civil rights legislation. It affects everything.” And people all around the country worked, wrote, did letters to the editors. So we got to invite and hold it out behind the White House where all of those, who worked to make it happen, could come and be part of the celebration.
And there was a long line to get in the White House, and Curt being Curt, he was chatting with everybody and moving up and down the line. And I was towards the end with Justin and Curt says to Justin, “I don’t have my wallet or ID. It’s in a different suit. I put this suit on this morning straight from the cleaners.”
Michelle Bishop:
Oh, no. And if people don’t know about Curt Decker’s suit collection, that’s a whole other thing. Oh, my gosh. Okay, what happened?
Jim Dickson:
Well, he didn’t have any ID, and so the guards knew Justin and Justin said, “This man is important. He needs to be here. It’s a simple human error. I’ll vouch for him. Let him in.” And so Curt got in, but there was a minute or two there where it looked like he was going to be tearing through the fence in his new suit.
Michelle Bishop:
Oh, that’s terrible. I know he fought hard for the ADA. And his heart must’ve been in his throat.
Jim Dickson:
Yep. So I sat with Bob Cooper and other folks from Rhode Island, and Evan was on the stage.
Janine Bertram, Evan’s partner, had a colorful past and actually had a conviction around, I don’t remember specifically what it was, but trying to stop the Vietnam War. She broke through something, or pour blood on the records, or I don’t remember what it was. But in a big group like this, even though she had been playing bridge with George and Barbara Bush about once a month, there was real nervousness on the part of the security people about having her in the audience.
And Cooper and I were assigned to sort of run interference for her. And a very genteel Texas lady aristocrat was assigned to sit between Janine and the aisle to make sure she didn’t leave the aisle. And I played my blind card with my dog, and I got myself in the aisle.
And it was a riot because this woman was very nervous, and she had on a lot of jewelry, and whenever she jumped up, you could hear a jingle. And as people walked in and saw Janine, they’d all yell, “Hey, Janine,” and Janine would stand up, and people would hug, and I’d move out of the way so they’d hug. And this poor woman had mild heart attacks every time Janine stepped out into the aisle, but Janine knew she had to stay where we were.
But it was a, I don’t know what you would call it, it was an ironic, funny kind of capstone story. I used a white cane in those days, and I had a little, bunch of us had American flags handheld, and I taped my flag to my cane. And whenever we’d cheered and waved, I would stick my cane up in the air and wave it with the flag on it.
And at the very end of one of the network coverage, because this had never happened, there was well over a thousand people. And one of the networks picked up on that and showed the flag waving on a white cane a couple of times during this story.
And after the signing, we all went back out onto the Mall and had refreshments. And Justin and Evan and Pat worked the crowd saying, “Passing this law is going to be much easier than enforcing it, and we’re going to need organized fights to force enforcement.” And some of that’ll be legal, but a lot of that has to be political public education.
We were asked, people were asked to go back and meet with the editorial boards at their newspapers or TV. A lot of people had set up interviews with the local TV stations, either as they left or came back. And it was really important strategically and that the message for those who of us who were interviewed when we got home, “Oh, it was great, but it’s easier to pass the law than enforce it, and we’re going to have to work hard to get this enforced.”
And that message was delivered hundreds of times to local media by the folks who had come to Washington. It was very important.
Michelle Bishop:
And ain’t that the truth?
Jim Dickson:
Yes, yes.
Michelle Bishop:
That predicted the next 30 years of the disability rights movement. Yeah. Wow.
Jim Dickson:
Yeah. We still have a long way to go. I mean, the unemployment rate is still double for the able-bodied. We still have lots of people, because disability can pop up in a family for the first time, we still have lots of people being hidden, sheltered, not integrated by their families. And unlike other civil rights movements, we have not moved yet to where people with disabilities will run for office with the disability story being central to their political message.
After the passage of the Civil Rights Act, African Americans ran, arguing, debating, telling their story of discrimination. The women’s movement came along, women moved and ran on their stories. The gay rights successes came. But where were the people with disability running for office with their disability being an upfront in Central Park why they should be elected?
Michelle Bishop:
And yet you’ve never run yourself, Jim. Wait, maybe it’s time.
Jim Dickson:
I’m too old. I’m 78. If I were younger, I would’ve.
Michelle Bishop:
Also wait, I have one more question about the day the ADA was signed. You all after the signing was over, went around town talking about how we’re going to have to fight to enforce this bill. Nobody said, “For today, let’s stop and have a beer?”
Jim Dickson:
No, we did. People did do some of that, but we had… It was hot, and so we had ice cream and cold drinks set up on the Mall for people, and clusters of people had their beers and that kind of stuff.
Michelle Bishop:
That’s a good point. It was July. I think the other lesson learned for future disability rights leaders is do not have your major bill signed in the middle of the summer.
Jim Dickson:
Right.
Michelle Bishop:
You will have to go to anniversaries on the lawn every year in the heat.
Jim Dickson:
Yep.
Michelle Bishop:
This was fascinating to me that… I’m sorry, I’m also monopolizing. Did anybody else have questions or thoughts?
Jim Dickson:
You know, it is amazing when I was thinking about this. It’s been years since I got in an elevator that didn’t have a braille button. It’s been years since I had a cab driver or a restaurant saying, “You can’t come in here with that dog.”
So there has been real progress, but I’m not sure that it’s really spread thoroughly amongst the rank and file.
Michelle Bishop:
I was thinking that, too. Early on, you were talking about the braille buttons on the elevator. And when you were kind of bringing it all back around and talking about how we’ve come forward, but we still have a long way to go, in the back of my mind I was thinking, but I do always see braille on the elevator buttons.
Jim Dickson:
Yep, yep.
Michelle Bishop:
So we’ve solved a few problems.
Jim Dickson:
And now we even have elevators that announce, in addition to the braille.
Michelle Bishop:
So looking forward, I mean, this was really fantastic. We were all really interested in hearing about what it took to get the ADA passed, and also just that moment when you see your work come into fruition.
But looking forward, what do you think is the next big task, goal, I don’t… for the disability rights movement? Where do we go from here?
Jim Dickson:
I do think we have to start getting leaders to run for office at the local] and national level. As much progress as we have may about the public attitude towards disability, what just happened to Joe Biden says there is still prejudice and fear that bodily dysfunction and psychiatric dysfunction can generate in the general public.
And I think people running for school boards saying, “My experience being blind or deaf or using a wheelchair or whatever is important, and I can bring value to how the school system is run or the state legislature,” we need to force the dialogue.
It’s great that we’re seen as having civil rights, but we need to be seen as leaders outside of the disability silos. We need to be seen as people whose life experience will make us strong leaders who make the country, the state, the city a better place to live.
Michelle Bishop:
Jim, thank you. This was amazing. This was fascinating. I know I’m looking at my co-hosts, and they’re all getting really excited and really worked up. Stephanie said, #CriptheCongress-
Jim Dickson:
Right.
Michelle Bishop:
… which I love.
Thank you for hopping on with us and just sharing your story. I think it’s really important that we capture all of that.
Jim Dickson:
Right. I should mention Jonathan Young wrote a very good short book on the story of the passage of the ADA and for the life of me, I can’t remember the title.
Michelle Bishop:
Oh, we could probably find it and put it in the show notes if folks want to check it out.
Jim Dickson:
Yeah, should definitely be there because it tells a lot of good stories and points that I touched on for two minutes, get elaborated for 15 pages on the book. And it’s very readable. It’s not a tome.
Michelle Bishop:
Okay. Oh, thank you. We’ll look out for that. That’s amazing. Yeah, absolutely. I appreciate it.
I don’t know if folks know, Jim and I go way back, well, maybe not like signing of the ADA far back, but pretty far back.
Jim Dickson:
Yep.
Michelle Bishop:
We’ve done a lot of work together over the years on access to the vote for people with disabilities. So feel like looking towards the future in saying we need to be seen as leaders and we should not only be voting, but be elected to office. I feel like that’s where we leave it, right? That’s the message.
Jim Dickson:
Yep. Thanks a lot, everybody.
Jack Rosen:
Wow, that was so great of Jim to come on and share his stories with us and talk about what it was like to fight for the passage of the ADA.
Michelle Bishop:
My favorite thing about this interview is that our last ADA episode had Curt Decker, and this episode featured Jim calling out Curt Decker for wearing the wrong suit to the White House that didn’t have his ID in it, and almost not getting into the signing of the ADA. I will pretty much never forget that story.
Stephanie Flynt McEben:
That’s too funny.
Michelle Bishop:
Thanks, Jim. We appreciate it.
These days both Curt and Jim are, I’m going to say, mostly retired. Because they claim to be retired, but we still see them everywhere advocating for everything. So I hope Curt is off somewhere on a cruise and Jim is off somewhere sailing.
Stephanie Flynt McEben:
Wow.
Michelle Bishop:
Stephanie, do you have a joke for us?
Stephanie Flynt McEben:
I do, indeed. Are y’all ready for the… I feel like this one’s too easy, but oh, well.
Michelle Bishop:
I feel like we’re probably not ready.
Stephanie Flynt McEben:
No, it’s fine. So what do y’all call baked spaghetti? I feel like Michelle’s going to know this.
Jack Rosen:
Wait, I got it.
Stephanie Flynt McEben:
Oh, do you?
Michelle Bishop:
What is it? What is it?
Jack Rosen:
An impasta?
Stephanie Flynt McEben:
Yep. Go, Jack. Yay.
Michelle Bishop:
Jack, it’s finally your time. You got the joke.
Stephanie Flynt McEben:
I knew it was too easy.
Jack Rosen:
Finally. We need it. These used to be easier.
Stephanie Flynt McEben:
Sorry.
Jack Rosen:
No, it feels good. It’s a nice win.
Stephanie Flynt McEben:
<< I’m not sorry >>
Michelle Bishop:
You really stepped up your… You can’t sing Demi Lovato. We’re going to get sued.
Stephanie Flynt McEben:
Yep, exactly. That’s the whole point.
Michelle Bishop:
Okay, okay. That’s fair.
Well, before Demi Lovato comes for us and ends our podcast, Jack, can you tell the people where to find us on social media?
Jack Rosen:
If Demi Lovato’s attorneys would like to reach us to let us know they’re suing us, they can reach us at podcast@ndrn.org.
They could also let us know via the comments on our social media pages, which includes Facebook, Instagram, LinkedIn, Twitter, Threads and Blue Sky. So if you represent Demi Lovato, please reach out to us at any of those options.
Until next time, folks…
Stephanie Flynt McEben:
Bye.
To kick off our series highlighting the fight for the passage of the Americans with Disabilities Act we have on NDRN’s founder and former Executive Director Curt Decker. Curt tells us about how the disability community came together to make sure no one was left out of the protections of the ADA and warns us about the downsides of helping getting major legislation passed in summertime in DC.
Full Transcript available at: https://www.ndrn.org/resource/ndr-curt-decker/
Jack Rosen:
I don’t know. I guess someone has to kick it off, right?
Michelle Bishop:
One of us should definitely be talking. How long have we been recording?
Stephanie Flynt McEben:
Like four seconds? I don’t know. It’s raining outside, y’all. It’s gross.
Michelle Bishop:
Are we just sitting here not recording?
Jack Rosen:
We’re recording.
Stephanie Flynt McEben:
No, we’re sitting here recording. We’re just not speaking.
Michelle Bishop:
Sitting here recording nothing?
Jack Rosen:
I guess-
Michelle Bishop:
We can’t put out dead air.
Jack Rosen:
We could. We could do a more experimental-
Stephanie Flynt McEben:
[inaudible 00:00:24] nothing and it’d be fine.
Michelle Bishop:
Experimental?
Jack Rosen:
Yeah, we could do a more experimental type of podcast. Maybe it’s like jazz, where podcasting is about the notes you don’t play. Is that what people say about jazz?
Michelle Bishop:
Is it? Just roll the opening. Welcome back to National Disability Radio. I am one of your hosts. Michelle Bishop, voter access and engagement manager at NDRN.
Stephanie Flynt McEben:
And I’m Stephanie Flynt McEben, public policy analyst with NDRN.
Michelle Bishop:
And our producer who keeps trying to sneaky call himself a host.
Jack Rosen:
Hi, producer and host. Really bit of everything. The workhorse of the podcast, if you will. Jack Rosen here. How are you doing folks?
Michelle Bishop:
Not the workhorse of the podcast. Okay. Okay, wait, so this is… We’re kicking off our ADA special?
Jack Rosen:
Yes. This is the first for our series of interviews with folks who were involved in fighting for passage of the ADA. And for this one, we have on an old friend. Michelle, you want to tell people who we have?
Michelle Bishop:
So for the very first in our series on the ADA, we actually have a good friend of the podcast, Curt Decker, who is actually the former executive director of NDRN. He actually founded the National Disability Rights Network in 1982 and led the organization for, what, 40 years? Yeah, yeah. About 40 years. Before that, Curt was actually the director of the Maryland Disability Law Center, which is the Maryland PNA. He was also the director of the Help Resource Project for Abused and Neglected Children. And was a VISTA worker prior to being a senior attorney for Baltimore Legal Aid Bureau. So Curt has deep roots in Maryland and the DMV and was our fearless leader for… Stephanie, were you here when… Did you-
Stephanie Flynt McEben:
I was very briefly. So I started in 2021, and then Curt retired in summer of 2022.
Michelle Bishop:
Okay, so every single one of us can say that Curt was once upon a time our fearless leader before Marlene Sallo took the helm of NDRN. So in addition to all that, Curt actually was instrumental in the creation and passage of the ADA and was on the White House lawn the day that it was signed. And he’s here today to tell us about that experience.
Curt, did you go to Hamilton?
Curt Decker:
Yes.
Michelle Bishop:
I did not know that.
Curt Decker:
Oh yeah. That was so weird about my life. I grew up in Albany, went to Hamilton. I got accepted to Brown, but frankly, Hamilton gave me more money. So I went to Hamilton. Money was an issue. And then I ended up at Cornell for law school and took the New York bar, came down to Baltimore for one year as a legal aid attorney and never went back, and then… Never practiced law in New York, a total waste of time to take the New York bar and they still call me now to… Please, I’m long gone. Anyway.
I did a couple things in Baltimore, got hired by Maryland Disability Law Center, [inaudible 00:03:37] it was called something else then. It was the very first iteration of the PNA system when it was only developmental disabilities. And then I helped… You know the story. I helped form the national association with a bunch of other execs around the country because there wasn’t anything. And then started going over to Washington because I was the closest guy there, maybe other than DC, and started representing at NAPAS it was called then, first as a volunteer, then as a paid consultant, then executive director.
Michelle Bishop:
What did you do when you were actually at the Maryland PNA?
Curt Decker:
I was executive director. I got hired. I was running a child abuse program for the state of Maryland. I knew people around. I got a call from one of my board members who was involved. She said [inaudible 00:04:23], “This new thing that just created by Congress called the Protection and Advocacy Systems, and it’s supposed to investigate abuse and neglect of people with disabilities, and we need someone to take it over and make it work.” And I said, “I don’t know anything about disability. I have no contact with the disability community at all. I never had a disability. I really didn’t have any relatives with it, so this is way…” And they said, “No, no, we don’t care. We need someone who can get this thing together and make it work.” The child abuse program was another federal grant. It was winding down, so I was like, “Okay, I’ll try it.” And I was lucky, it was right around when 94-142 came into existence, the Rehab Act. So I was like, “Oh, these are interesting legal issues. I never knew about this.”
And then I went out to Rosewood State Hospital and the director there locked me in the room, the day room, with a bunch of adult, folks with developmental disabilities and tried to scare me, and it was like… Fortunately, I wasn’t scared. It was a great story. I walked in, these men were there, they looked around, there was a new person in the room. So they got all excited and they started coming towards me and it was like, “Ooh, this is interesting.” And I smiled and they all smiled and it was like… What’s when I realized that these… We tried to close Rosewood. We finally closed it in 20… I think it was 2010. I started in 1979, and it took 30 years to close that craphole down. So when I was there, there were 3000 people at Rosewood, and then eventually we kept pushing and pushing and pushing. So yeah. It was called MAUDD, the Maryland Advocacy Unit for the Developmentally Disabled, MAUDD. And I was executive director for three years.
Michelle Bishop:
I actually did not realize you started as the executive director. More than 3000 people in a single institution.
Curt Decker:
Oh, Willowbrook was 7,000.
Michelle Bishop:
What?
Curt Decker:
Those places are big.
Michelle Bishop:
I did not-
Curt Decker:
Very big, very big. I think Willowbrook, We always tell that story in the history of the P&As, it was the largest facility for people with intellectual disabilities in the world, I think. And a nightmare. You’ve seen that video a million times, I’m sure.
Michelle Bishop:
[inaudible 00:06:33], yeah.
Curt Decker:
Anyway. Yeah, so then I started, I spent some time… I left Maryland, but I was… Were working for NAPAS, but part-time I had other clients. I had clients in Annapolis I was representing. It’s now called AAIDD, but it was called AAMR at the time. I was working part-time, I was working on the CAP program, and I was sitting in the DC P&A office writing stuff, and we got the CAP program, and then we got the CAP grant, and then that was [inaudible 00:07:05]. They hired me full-time, and I think that’s when they hired Sally Rose and off we went. We had PAD and we had CAP, and then we got PAIMI and just kept going.
Michelle Bishop:
That’s funny. My mentor, when I started out independent living center in Missouri, and my mentor was one of the original disability lobbyists in Missouri, and he got into that work because he was working in independent living center, and they had a bill they wanted to get passed. They didn’t have a lobbyist then. So he was like, “I’ll go.” Went and found someone to sponsor the bill, and they were like, “We’ll take care of this.” And he went back to St. Louis and they didn’t do anything. And then of course, the bill went nowhere, and that was the one they learned the lesson that, if you’re not there-
Curt Decker:
That’s right.
Michelle Bishop:
Pushing for it, it’s not going to happen. And it sounds like the P&As were created, and then you understood that if you’re not there, somebody’s not in DC protecting what we have and building upon it, it’s not going to happen.
Curt Decker:
And that was exactly right, because [inaudible 00:08:07] I ran this child abuse program. I had done that for four years, and again, they were all over the country, a similar model. We’d have these meetings and I would say to people… And I helped organize an association of these child abuse programs, the same because they were federally funded. When I got to the P&A and I started talking to the other executive directors in the early days, ADD had money, and they brought us all together for a meeting. And it was like, who’s representing us in Washington? Well poor Marshawn, the ARC is the guy who’s [inaudible 00:08:44], “That doesn’t make any sense.”
We had big fights. The first fight was whether we should have a national association. There were a bunch of Executive Directors, “People will tell us what to do from Washington if we have that.” Well, they were right, that’s exactly what happened over the years we kept saying. “Here’s a new program. Here’s a new program. Here’s a voting program. Shut up. Take it whether you want it or not.” So we had that battle and we’ve created the national association.
Then we had to say, “We need dues, we need money.” And people, “Oh, no, no, no we can’t charge, we can’t use our federal money to pay dues. It’ll take money away from direct services.” We had the big fight about that. So then we created a due structure, and then that started getting us a little bit of money. That’s when they could hire me as a consultant, but each one of those developmental stages was a fight. And as you well know, we’ve been fighting ever since. Some of the P&As, “We don’t want this social security program.” “Shut up, take it. It’s great.”
Michelle Bishop:
I’m a little bit biased, but I’m glad that they took the voting program.
Curt Decker:
Yes, I guess I’m too. I worked on that. I worked really hard on that. It should have been $10 million. That was with the Help America Vote, but we only got five. What’s that turn now, about eight or nine?
Michelle Bishop:
Yeah. Yeah. It’s grown.
Curt Decker:
Yeah. Don’t get me going about history, I can go on for days.
Michelle Bishop:
Actually, that is somewhat the point of this-
Stephanie Flynt McEben:
That is the point, yes.
Curt Decker:
Right, right, right.
Michelle Bishop:
We’re doing a series about the fight for the ADA leading up to the anniversary of the ADA, and we were just hoping you could tell us about your experiences being a part of that fight to create the ADA, get it passed into law, get it enforced, all of that.
Curt Decker:
Sure. I can do that. Do we need to start free going here and just, or do you have specific questions or do you want me to start talking?
Michelle Bishop:
I feel like tell us a story.
Stephanie Flynt McEben:
Yeah, [inaudible 00:10:45] stories.
Curt Decker:
Okay. As I remember it, [inaudible 00:10:49] other people, the earliest iteration was the National Council put together a whole report on the need to… First I mean way back. We had the Rehab Act of 1974, where that banned discrimination based on federally-funded and federally-conducted programs. And from ’74 until about the late 80s that was in place. We and other people would use that to go after, again, federally-funded or federally-conducted. Somewhat broad because you had a lot of federal contractors. But people realized that that was, on the one hand, pretty narrow, and there was a whole other world out there that was not covered. So the National Council started with a proposal to do this, have a whole new discrimination bill to recover everything. It was a blueprint, it didn’t really go anywhere, but it got people organized around it.
Initially, it was controversial because the original thing was it was going to be a flat earth position that everything had to be accessible. And when we started meeting with people, I met with Weicker and Tom Harkin with Bobby Silverstein and some other people, and it was pretty clear that wasn’t going to go anywhere because people would say things like, “What do you do with the New York subway? What do you do with all of these old buildings, old… With Amtrak, you just can’t mandate automatically a flat earth.” So that changed. I think Pat Wright was someone who actually came up with this idea, “We’ll go from the flat earth to a line in the sand. We’re going to dry a line in the sand the day this thing passes. Everything new is going to have to be accessible, and we’ll just live with the old stuff. There’s just not much we can do about that, and maybe over years things will get better.”
And so we formed this coalition of all the disability groups. I always tell people that one of the things that I thought was terrific was that everyone sort of put down their cudgels and stopped fighting with each other and came together as a unified group. We created a grassroots group, we created a group in Washington that met regularly, and we started getting… Tony Coelho was taking the lead in the House, although he disappeared. I never ever figured out why he just left the Congress overnight. And so Steny Hoyer picked it up. And then of course, Weicker I think moved on. Lowell Weicker was very important to us as well. He’s the person I got the CAP program and the PAMI program from. He was a Republican from Connecticut. He had a child with a disability. Anyway.
So we began the process and it was a pretty hard slog in terms of… Because if you think about it, now what we’re doing is we’re taking on the entire country, every business, every major organization, and they’re organized. So you have the NFIB, the National Federation of Independent Business, you have the National Restaurant Association, you have Amtrak, you have the Catholic Church. The one story I always tell people about is that the reason why churches are not covered by the ADA is pretty much because the Catholic church came in and the Senate especially, I remember that hearing really well where they came in and said, “We do not want to be covered by the ADA. We would have to hire. For example, we will have to hire people with HIV, which means they’re gay and we don’t want to have gay employees.”
So there was this really interesting connection between homophobia and disability discrimination, and that’s one of the reasons why churches are not covered. And so today, the church across the street from my house in Baltimore, they just spent a bunch of money putting in ramps, but it was all voluntary because there’s no requirement. I think churches figured out that so many of their constituents are old that they better have things that are accessible. So that was one story.
As I remember, in trying to kill the bill, these national associations, the two big issues at the time, ’88, ’89, were AIDS and mental health. And so the National Restaurant Association came in and demanded to have their staff of restaurants excluded. And their theory was that… It sounds ridiculous now, but I spent many, many hours, we all did, talking about blood in the salad. The restaurant association said that, “If we have to hire or keep waiters staff that have HIV, they’re going to cut themselves, bleed in the salad, and they’ll give AIDS to our customers.” There was an amendment in the House to… They called it the Chapman Amendment to try to eliminate food workers from coverage of the ADA under this whole shibboleth of AIDS.
And so that was used as a sort of a stalking horse to try to throw the… People just wanted to kill the bill and so that was one way of trying to do that. The same thing was with mental health, [inaudible 00:15:59] have all these mentally ill people. Amtrak used that a lot. And we would get things like, “What are you talking about? You have people with mental illness on Amtrak now. You have no way of keeping them off.” So the idea that amendment.So then we got into all these side arguments. The Chapman Amendment passed the House, but we got it knocked out in the Senate. So that never happened. So there was no food worker exemption. Catholic Church won, but the restaurant Association did not.
I spent a lot of time with, I think Congressman Dingell, time on Amtrak. One of the things that Amtrak, and you probably know this from all the work that we did later on at NDRN, Amtrak came and said, “We’re old and broken, and we have all these terrible stations, and Congress doesn’t like us and they don’t give us enough money, and there’s no possible way we could make Amtrak accessible.” And we went back and forth and back and forth, and we said, “Okay, we hear you. So we’ll give you 20 years.”
There were various different negotiations like that where I think we gave over-the-road bus companies like Greyhound and Peter Pan five years, we gave Amtrak 20 years. And so there were all these… We gave city buses 30 days because the theory was that 30 days after passage, you did not have to ever… You could buy an accessible bus. And so they got one of the shortest timelines. But other people, over-the-road buses were like, “We don’t turn them over that often, so we need five years.” And as I think you probably know when we found out 19 years later, Amtrak did nothing. And that’s when we jumped in and did the report and started… And DOJ took the report and sued.
And then that’s when Ken and I started meeting with Amtrak quarterly and all of that, as I tried to get them to… But it was pretty outrageous that they let 19 years go by without… And some of that was… I always tell people that some of it was on us. We didn’t pay attention. We ignored them. And we thought, “Now they’re doing it” and we never really checked to see if they were. And when we finally found out they weren’t, it was so embarrassed. we should have stayed on top of that.
And then the other thing I remember is it really was a time when the entire disability community came together. And I do remember some very specific moments sitting in a congressman’s office with Lee Page from Paralyzed Veterans in a wheelchair, some blind people from NFB. And you’d get the congressman saying like, “You don’t want to cover HIV. You’ll be willing to take that out.” And they would say, “No, no. No, we’re not going to slice off unpopular disabilities from this thing. We’re going to stick together and we want the whole thing. We want everybody to be included. We’ll make these side deals depending on different industries, but basically…”
And I thought that was an incredible moment when the disability community really came together and unified and said, “We’re not going to throw different people off the boat because right now they’re very unpopular.”
Michelle Bishop:
That’s one of the things that’s always really incredible to me about the ADA is that it was this moment where the community stood together and the definition of what a disability is and who’s protected being so incredibly broad, I think is so powerful. I did not know. The homophobia that was wrapped up and all that is wild to me. I’m not eating a salad with anyone’s blood in it.
Curt Decker:
Right, exactly.
Michelle Bishop:
That’s when you send it back.
Curt Decker:
Right. That’s right. Or even with a hair or a roach for that matter, but it’s like… Yeah. And that was an side issue in there that [inaudible 00:19:47]. Because if you think about, you’re probably too young, but 1988, it was the height of the AIDS crisis. There was very little in the way of… I think ACT came around. We didn’t discover HIV until 85, and then it was like ’87, ’88, there was really no cure. It was pretty frightening and people were pretty hysterical about that. And so that seeped into this whole issue about disability discrimination. And of course, the mentally ill have always been unpopular and still are, and still scapegoated.
Michelle Bishop:
And you were at the signing of the ADA at the White House, weren’t you?
Curt Decker:
I was. Where was I? So the signing was quite an event, and it was Sandra Perino from the National Council on Disability and Evan Kemp, because people did still credit the National Council on Disability starting the ball by coming up with that. As I said early on, that original report, which I don’t think really ended… It was the basis, but the actual bill was quite a ways removed from that initial, we want the world concept. Those pictures of the signing, it was a great day. It was a great day, but it was hot. Every time I’ve ever gone back to the White House for subsequent celebrations, it was always in July, and we were just miserable. So I always tell people, “Let’s get the bill signed in October.”
The other thing that we did when we finally got… We lobbied to get a statue of Franklin Roosevelt in the Roosevelt Memorial in a wheelchair. The original design did not acknowledge at all that he had polio and that he was in wheelchair. And so we fought for that and we got that. And that ceremony was in December. I was like, “Here we go, [inaudible 00:21:38] freezing or boiling.”
Michelle Bishop:
So you need to plan bill passage like a wedding. You got to shoot for the spring or the fall.
Curt Decker:
Absolutely.
Michelle Bishop:
The White House, you got a suit on and everything. It can’t be/
Curt Decker:
Oh my God, one of the worst just dreadful. [inaudible 00:21:53]. Was it the 20th? Was it five years ago? It might’ve been earlier than that. And it’s 90 degrees. And they also had… Patti LaBelle was going to sing. And of course the president and everybody else is in the White House. Cool. We’re out on this lawn just dripping. And out comes Patti LaBelle, and we’re like, “Great, this is going to be fabulous.” She starts singing and she’s going to sing New Attitude and we’re all bopping around. And then she goes off the deep end about her sister, her husband, she’s my shero. It couldn’t have been worse. I dragged myself over to the W Hotel to get a drink, it was so silly. But you know, it was great. We were honored to be there. We should definitely all be there, but it doesn’t come without its downsides in July.
Let’s see, I’m trying to think of some other things that happened in the actual lobbying experience that were… Because the things that I worked on were the Chapman Amendment, the Amtrak stuff, tons of meetings [inaudible 00:22:54], a lot of the meetings with Harkin and Hatch to try to bring the Republicans over. So I don’t know. I don’t know if this is all helpful at all.
Michelle Bishop:
No, it is. This is amazing. This is stuff that we want to record and get down because like you said, Stephanie and I, we weren’t there. I only know a bit through legend.
Curt Decker:
Yeah, no, it was a major… It still needs to be enforced. I think Maryland just ended up suing the Baltimore City for curb cuts because things are still bad in lot of places and of course Amtrak just blew us off. The other things that are interesting, airlines are not covered because there was a separate Air Carrier Access Act that had passed earlier and that Ken and I did some reg neg or regulation negotiations with the airlines. Housing’s not in there because we’d gotten disability into the Fair Housing Act in 1988, I think. And that was an interesting experience as well. That’s when I ran into Wade Henderson for the first time, and he was adamant about… His position, which I understand was you can’t open up the Fair Housing Act to add disability. If you do, other forces will come forward and try to rip the whole thing apart.
So he was pretty anti adding a disability, but we went forward and we got it and we were able to save it. But that’s one of the reasons went to Eric and I was like, “The DD council, for example, wants to reauthorize the DD Act.” And it’s like, “No, no, no, no, no, no, don’t go there because they’ll leave you alone, they’ll come right after the P&As. They’ll come after the access authority, they’ll come after the legal authority. You do not want to open up this bill.” So I understand the theory about not opening up established law for a good reason.
And that was what happened. You probably know that we had to do the ADA Amendments Act because we started getting… You pass a bill and it looks great, and you think you’ve covered all the basis, and then it goes into the courts. And then over the next three or four or five years, we were starting getting one horrible opinion after another. And Sandra Day O’Connor was the culprit in the Supreme Court as it came to… Let me see if I get this right. The bill came to Supreme Court. Oh, I know what happened.
So the case was there were two women pilots that flew regional airlines and they wanted to be promoted to the big airplanes which was where the money was, but you had to have 20/20 vision and they were denied. Their lawyer brought lawsuits under the ADA saying, “It’s discrimination.” In the surface, it wasn’t… If you were a pilot of a big airplane and you needed to wear glasses, you’re fine, but you couldn’t get to be a pilot if you needed glasses. So it goes to the Supreme Court and we’re hysterical because it’s like, “We do not want to get this bill before the Supreme Court.” And sure enough, Sandra Day O’Connor rules that if, yes, they have a disability in terms of poor eyesight, but they can ameliorate the disability by putting on glasses. And if you can fix the disability, you’re not covered. That just blew the whole employment section of the ADA out the window.
Because think about it, you’re mentally ill, you take lithium, you cured disability. Getting in a wheelchair, “Oh, you’re no longer disabled because you’re ambulatory.” The ramifications were just stupendous about being able to fix your disability and not therefore not being covered.
So we had to go back and after telling the whole disability community for years, “Do not open up this bill. Don’t you dare. You know there’s things we’d like to change. No way. Because we open this up and all those things that we beat back originally in 1989, ’90 will come back to haunt us.” But then we had a reverse course because this was so bad and just wiped out all the protections of the ADA that we would go back. I fell blue myself. I think Andy Imparato who was working… I know where he was at the time. Was he at APD?
We met and we got the Chamber of Commerce in because they were relatively supportive the first time around. And we renegotiated, Jennifer Mathis renegotiated. Leadership Conference was involved and came up with a definition of disability that said if you had these conditions, you were covered. And it didn’t make any difference to what you did. You put on glasses, you wrote a crutch, or you had drugs or diabetes. It was like, wait a second, [inaudible 00:27:38] tell me the… And people with epilepsy were getting thrown out of court because, “Oh, you can take your seizure medication so you’re no longer a person with a disability.” It was devastating all based on a pair of eyeglasses.
Michelle Bishop:
I actually did not know much of any of that. I want to be honest, I didn’t know any of that. And as a wearer of glasses, I am offended.
Curt Decker:
Yeah. To me, what’s interesting about that story is you work on a bill, you think you’ve got it covered, you pass it, great, fabulous, big celebration, go to the White House, and then it goes into the world and it starts getting used and things start to happen and it starts going to courts and you get the backlash. We’ve got huge backlash about back problems. A lot of people, a lot of them, not great lawyers, you come in, “I was fired for my job.” “Oh, why?” “My boss.” “Do you have a disability?” “I have bad back.” “Okay, you were fired because you’re disabled.” And so we got a whole bunch of cases in the early years of these, mostly back issues, but lawyers who were looking for a way to defend their client would try to glom… Even though the fact that they were fired had nothing to do with any impairment, they were fired because they’re a lousy worker, but that’s what lawyers…
And then we started getting this really bad reputation. The bill was getting a reputation for being all these insignificant cases and it was being abused, gone to a whole thing around accessibility stuff with restaurants. I remember was a big hoo-ha with Clint Eastwood who owned a restaurant out in California, and he came out and he went to Congress. And of course, there’s nothing worse in the world than to watch a congressional hearing with a movie star. These congressmen just fall apart and just lap it up. That’s why people are always trying to get movie stars to come and testify because the whole committee shows up, they just drool over them. And he got a lot of play about the abuse of the ADA making his restaurant bathrooms accessible. Shut up. And there were attempts at trying to amend the ADA around that as well.
So just getting it passed ain’t enough. You’ve got to watch it and see how it spins out into the world and how it gets used well, not so well, abused. And then you have to deal with the backlash. And the thing, as I said, the… I think it was ’86 or ’96, the ADA Amendments Act. You go back in and try to clean that up. And then we had to do the stuff with Amtrak, still are. I think Kenneth is better now, is still probably meeting with them. So that’s what I know and that’s what I can remember anyway.
Michelle Bishop:
I also think these days, there’s so much wild misunderstanding about the ADA. I have heard people say, “Oh, you have to hire people with disability, so you’re going to have a blind person drive a school bus?” That’s not how it works. [inaudible 00:30:34], “Oh, you’re going to have a service boa constrictor and bring them into a restaurant?” That’s not how any of this works.
Stephanie Flynt McEben:
[inaudible 00:30:40] I want to drive a school bus. Just kidding.
Curt Decker:
No, that’s… [inaudible 00:30:47]. Let me tell you about this. So one of the things we did do in 1989 is because we had the experience of the ’74 Rehab Act. So all these concepts of reasonable accommodation, essential function of the job, readily available, readily achievable, these were all concepts that had developed all through the 70s and 80s about how you interpreted the nondiscrimination. As employment, you had to be able to do the essential function of the job. if you’re blind, you can’t drive a bus, so you cannot use the ADA to have a blind bus driver, you had to be able to do the essential function.
So what we said, just like that whole story about the flat earth going to, “Okay, can’t do that, we’ll draw a line in the sand and go forward.” We also talked about putting the doughnut over the hole. The ADA was going to be the doughnut that sat over the concepts of the 74 Rehab Act, which we thought was smart because it was like these are tried and true concepts, reasonable accommodation had been out there for decades, over a decade, and so did readily achievable. And these were the things that were the balance, the statute that something had to be readily to make it accessible, and if it was going to cost a zillion dollars and bankrupt. So if you’re a bodega on the corner and you now had to make your store accessible, but it was going to bankrupt you, that was not readily achievable. You weren’t covered and you didn’t have to do that. If you were a big corporation, your ability to do readily achievable was a lot greater. So there was trying to strike these balances.
And the same thing with reasonable accommodation. The accommodation had to be reasonable. You just couldn’t demand to do things, accommodations in the workplace that… I’ve never been a fan of Mother Teresa because she fought us on not wanting to put an elevator in her businesses. It was a compromise and it was a reasonable bill trying to use these concepts that we thought people did fight back obviously. But it was a good, I think, strategy to build on what had already existed and not come up with all kinds of new weird things. Because as I said earlier, we were going after the entire country, every doctor’s office, every dry cleaning establishment, every restaurant, you name it. And it was going to be covered under the ADA, and that was terrifying to a lot of businesses.
Michelle Bishop:
Okay, I’m thinking about it now. I’m about to look it up. I’m pretty sure the Mother Teresa I remember from my youth was using a wheelchair at some point. Is that true? I’m wondering if that changed her stance.
Curt Decker:
I doubt. I don’t know. Michelle, I really can’t tell, but I know she had two-story buildings and she refused to put elevators in there. But you know we always said… And the other thing with things had to be like the program accessibility. So if you had a program, if you had a building without an elevator, you just had to make sure the program was available. So you bring the program down to the first floor in order to accommodate a person with a disability. So there were these kinds of trying to come up with some reasonable [inaudible 00:34:13] head off opposition, but two, to be fair and not bankrupt places.
Then we had the other abuse was these drive-by lawsuits, you probably remember. I don’t know if they’re still going on, but again, some fairly unscrupulous law firms would go get a person with a disability, travel around to a whole bunch of places, liquor stores, restaurants, and they’d go in and they’d say, “Oh, your bathroom isn’t fully accessible.” And the restaurant would say, “Okay, thank you. I’ll fix it.” They fix it and then they’d get a letter from the lawyer saying, “You owe $2,500 for attorney’s fees.” They would do that like 50 or 60 times. They did a lot in California, a lot in Florida.
So where’d the businesses go? They went right to their congressmen and said, “We’re being ripped off. We made the fix. And yes, if we went to court, we would win, but it’s going to cost me $5,000 to hire a lawyer to fight it and this guy wants $2,500. I’ll just pay it and get my money back.” Then we started getting all these congresspeople who wanted to amend the ADA because of all these… It was all these frivolous lawsuits. They weren’t frivolous, there was a violation, but it was fixed. So it was just a scam by a couple of law firms who saw an opportunity to… You always have to be on guard for these kind… Everything can get abused. The tax code’s abused. Everything is abused. You don’t throw it out, but you try to deal with it. I remember calling a couple of those of law firms, trying to talk them to negotiate with them about, “You’re killing us here and giving the ADA a really bad name.” They didn’t care, they were making money.
Michelle Bishop:
Even though you accidentally, it sounds like, fell into working in the disability rights movement a long time ago, it clearly became a life’s passion. What do you see as the new frontier in disability rights? I think the ADA has changed so much about the lives of people with disabilities. It can’t be overstated how incredibly important the ADA has been, but a lot has changed since 1990. In your mind, what’s next? Where do we go from here?
Curt Decker:
It’s a good question. I’ve been retired now, and so I don’t spend a lot of time thinking about these issues. I have a little bit of contact with a few people out there once in a while. Yeah, it’ll be interesting to see how.. By the way, you’re absolutely right. It changed the face of the country. As I said, for all of the downsides and fights and abuse that happens, it has been a phenomenal piece of legislation. I think it’s something like George H. Walker Bush, that it was his biggest accomplishment. It really was an impressive, massive kind of thing that really changed the whole face of society. Not that there aren’t curb cuts that need to be done and “blah blah blah”
One thing I would think about is all this, and I don’t know much about it, but all AI and all these new technologies, making sure that they adjust and adapt. And I think the disability community has to be pretty vigilant. I have to laugh, the fact that Musk and the president wants to do self-driving cars, that’s a good thing. We want self-driving cars so people who are blind can have cars. That would be cool. I’m happy to see the paper straws go away because we objected to the paper straws doing away with plastic straws because people in wheelchairs and quadriplegics needed something stronger, they depended on to survive. So who knows, in a weird way, a couple of their little stupid things could actually have some benefits.
The future of the disability stuff, it’ll be interesting. Technology helping people walk who are wheelchair-bound, what impact that’s going to have on. Is that going to be considered no longer disability? So the technology could have a pro and con, and I think that’d be something that we have to watch carefully. Although right now the most immediate threat is… Maybe we don’t even talk about the future, I’m going to talk about next week when they do away with the Department of Education and screw up the IDA. The EEOC has been devastated, and the Department of Labor’s discrimination and… I did a lot of work with them trying to make sure they were going after 14(c) violations and also just in general discrimination based on disability. And so a lot of the, what’s going to happen with the disability rights section, Department of Justice.
So it’s nice to think about the future, but let’s talk about… The future as in next month when they try to… And it’s really odd, we survived pretty well during the first Trump administration. He didn’t care. We were not a base issue. They were on an immigration and they left us alone. And we stayed under the shadows as you know. I couldn’t believe we got the social security bill, one of the biggest programs we had in the Trump administration. He didn’t know what he was signing, thank God. And I was having a little bit of a crisis of conscience when I was like, “We finally got a pass. And oh God, if he does a signing ceremony, do I have to go there and stand behind him? I’ll spit.” He was not going to do that. He didn’t care about disability. Now, all of a sudden, it does seem like…
And again, I don’t know if it’s so disability-focused, it’s going to have impact. If you do away with the Department of Education, what’s the Department of Education? It’s Title I and IDA, are two of their major biggest programs. So I see Carol Dobak a lot here. She goes to the wine shop. You’ve probably heard this story. I used to jump on her when I was working, and then I still see her every once in a while and say, “What’s going on?” See what’s happening with OSERS and RSA? She did think they were going to lose a lot of their probationary employees. Yeah. So I do think there’s a very real, very current threat right there. And then if we can weather this storm, think about your question about where are things going to go in the future?
Michelle Bishop:
I think you’re right as well that disability rights is such an interesting movement because our opponents and our champions always come from both sides of the aisle.
Curt Decker:
Right. Yeah.
Michelle Bishop:
And I feel like that’s really unique.
Curt Decker:
And we were very careful to stay nonpartisan. That was always a mantra of CCD and all the other. All of us was like, “Just don’t make this a partisan issue or we’ll lose because we need those Republicans.” And it worked pretty well, but I don’t know what’s going to happen now, so where are these people… Where is Susan Collins and all these people about IDA? [inaudible 00:41:24].
Michelle Bishop:
We did actually do an episode of this podcast with Stephanie behind the wheel of a self-driving car.
Curt Decker:
Great. Yeah, so you have to give credit where credit is due. So plastic straws and self-driving cars might be a legacy of the Trump administration. [inaudible 00:41:42]. As you said, I dropped into the disability world unplanned and without any previous history and got very excited about… From a lawyer’s point of view, there were some really great legal issues. But then just in general, I’ve always been a civil rights-y kind of guy. I was lucky that so early on this was a major civil rights issue along with race and LGBT, and spent my life doing that. And I’m really grateful that I didn’t go to New York as a corporate lawyer, which is what Cornell Law School told me I should do. So I got saved. I was very lucky.
Michelle Bishop:
I can’t imagine you being a New York corporate lawyer, to be honest. This was totally the right path.
Curt Decker:
It turned out it was for me. That’s the other story I tell people all the time. When I was in Cornell, it was a very conservative law school. All the classes were tax business, they’re corporate and it was no… Not like now, law schools have clinics with civil rights clinics and [inaudible 00:42:43] used to have an LGBT clinic at Georgetown. Nothing. So I just didn’t know that I could be a public interest lawyer. And then I had dodged the draft and I joined VISTA, and they sent me to Baltimore Legal Aid. And that first year was like, “Oh, I didn’t know you could do this. I didn’t know you could represent poor people and go around and fight Medicaid system,” and all that stuff. And it was like, “This is kind of cool, and I’m really good at it.” And they offered me a job and I stayed, never went back. I’m sitting in my Baltimore house right now, never went back to New York, and it was a good thing.
Michelle Bishop:
I feel like that is everything I can think of to ask about. Stephanie, did we miss anything?
Stephanie Flynt McEben:
No, I think that we covered it. But yeah, thank you so, so much, Curt, for being willing to talk about your lived experience during the passage of the ADA and just giving us some insights to share with our listeners, we totally appreciate it and we appreciate your time today. It’s really been great. And like I said, I love stories, so thank you so much for sharing your story with us.
Curt Decker:
Sure. I enjoyed it. It was really fun. Brought back a lot of memories, so great. Good luck, and I hope things get better, and I hope… Very great. Good talking to you all. It was fun.
Jack Rosen:
It’s always great getting to catch up with Curt. He has such a wealth of knowledge about the disability rights movement, how they accomplished the passage of the ADA, and so many other milestones for this movement. That is fascinating, the part about blood in the salad and how they just showed solidarity and did not waver on these issues. It’s really impressive.
Stephanie Flynt McEben:
Yeah, I’m here for it. And Curt is such a great storyteller as well. So just listening to his insight, it was really, really great to get to hear from him. You know what else is great?
Jack Rosen:
We should have asked Curt to stay for this part. I would love to see his reaction?
Michelle Bishop:
Yeah, yeah. We shouldn’t let him go. But Stephanie, please tell us your joke of the month.
Stephanie Flynt McEben:
Oh yeah. Of course, absolutely. How much do rainbows weigh?
Jack Rosen:
How much do rainbows weigh?
Michelle Bishop:
Do you find these on Popsicle sticks?
Stephanie Flynt McEben:
Sometimes I get them from other sources, yes. Sometimes they’re originals. This one is from source, but I thought it was fun. So we’re doing it.
Jack Rosen:
Okay. How much do rainbows weigh?
Michelle Bishop:
I got nothing.
Stephanie Flynt McEben:
You ready? Jack, do you have a guess? Come on.
Michelle Bishop:
We never have a guess. Somebody has to have a guess.
Stephanie Flynt McEben:
Right? Michelle, you used to guess all of the right answers.
Michelle Bishop:
I know. That was a scary time in my life. I have no idea. Stephanie, please tell us.
Stephanie Flynt McEben:
Okay. How much do rainbows weigh? Not much, they’re actually pretty light.
Jack Rosen:
I like that one. That one’s funny.
Michelle Bishop:
That one’s not bad. That one’s not bad.
Stephanie Flynt McEben:
Thank you.
Michelle Bishop:
We’re doing a series for the anniversary month of the ADA. Does that mean we’re going to have multiple jokes this month?
Stephanie Flynt McEben:
Yes.
Michelle Bishop:
Oh.
Stephanie Flynt McEben:
And there’s a very special joke, I believe, that’s probably coming to you at the end of the month. So stay tuned.
Michelle Bishop:
I’m sure everyone’s so excited.
Stephanie Flynt McEben:
Yes. I’m excited. I almost told it this episode, but we’ve got to give the people anticipation, the two listeners to this podcast.
Michelle Bishop:
All two of our listeners I’m sure are very excited to hear this joke. Jack, where can people] find us on social media?
Jack Rosen:
You can find us on Facebook, Instagram, LinkedIn, Twitter, Bluesky, Threads. I think that’s all of them. Maybe we’ll make a MySpace.
Stephanie Flynt McEben:
Oh my gosh.
Jack Rosen:
Write in. Write in to podcasts@ndrn.org if you think we should make a MySpace. Until next time, folks.
Stephanie Flynt McEben:
Bye.
After three years, Jack has finally gotten Stephanie and Michelle to do an episode about sports. And not just any sport, but golf. In this episode we sit down with Josh Basile, Andrew Mitchell, and Kate Strickland to talk about AdapTee Golf, what it means to reclaim sports as a person with a disability, and how to play the ninth hole at Sligo Creek Golf Course.
Learn more about AdapTee Golf at: https://adapteegolf.com/
Learn more about Determined2Heal, Josh’s foundation focused on people with spinal cord injuries at: https://www.determined2heal.org/
Full transcript of this episode available at: https://www.ndrn.org/resource/ndr-june25/
Jack Rosen:
So either of you watched the US Open this weekend?
Stephanie Flynt McEben:
No.
Michelle Bishop:
I did not.
Jack Rosen:
Well, that is an anticlimactic way to kick off this one then. For those who are interested in golf, J.J. Spaun won. It was his first major win. He sunk the putt on the last hole to be the only person over or under par at Oakmont. So that was very cool. And our guests on this episode would be interested in that and maybe no one else. Hopefully at least two of our listeners.
Michelle Bishop:
Jack, you open this episode talking about a golf tournament, you know full and well me and Stephanie don’t know anything about golf.
Stephanie Flynt McEben:
Where’s the cricket sound? I-
Jack Rosen:
But I guess you guys are about to learn quite a bit about golf, specifically adaptive golf.
Michelle Bishop:
That’s cool. We’re going to do the intro to the whole episode where we introduce ourselves or Jack is going like hella rogue today. Stephanie, how do you feel about this?
Stephanie Flynt McEben:
Yeah, I’m over here like, “Wait a second. We’re not good at” … I do appreciate the confidence in us, though.
Michelle Bishop:
I … Yeah, [inaudible 00:01:08] the episode.
Stephanie Flynt McEben:
What else are you going to do?
Michelle Bishop:
Don’t I kick off the episodes?
Stephanie Flynt McEben:
But this is probably the cold open.
Michelle Bishop:
You miss one or two episodes that get recorded when you’re traveling or so sue me that time my car broke down and now Jack’s just in here taking over the whole operation.
Stephanie Flynt McEben:
Man.
Michelle Bishop:
Wait, is this a cold open?
Stephanie Flynt McEben:
I figured it … I don’t know because we know nothing about golf, so I figured that Jack was just like … I don’t know.
Michelle Bishop:
Why don’t we ever talk before we record an episode? We could put some level of planning into this. I mean, obviously not for this episode, it’s too late now.
Well, Jack, I have to say as our pro host extraordinaire that I think this month’s episode, this topic is truly your jam more than me or Stephanie will ever comprehend. So I think you have to tell the people what this episode is about this month.
Jack Rosen:
I’m excited. I finally did it. I finally got us to do a sports podcast. It has been years in the making and I am so excited that we got to do it for this sport, my favorite one, golf. Today, we have on Andrew Mitchell and Josh Basile and Kate Strickland with AdapTee Golf. They are here today to talk about this innovative, exciting way of playing golf for those who are physically unable to swing a golf club. Josh and Andrew invented it, which is pretty cool, and I am so excited to have them on today. I will let them introduce themselves. Josh, do you want to kick us off?
Josh Basile:
Absolutely, Jack. And Michelle, it’s so great to be here today. So my journey into paralysis started out two decades ago. I was on a family vacation at the beach in Delaware and turned my back to a wave. Wave picked me up and slammed me head first against the ocean floor. As an 18-year-old, I heard a loud crack and it was my fifth cervical vertebra bursting. And since then, I’ve been paralyzed below my shoulders. I was first on a ventilator, I was able to wean off that, and then was able to go through the different hospital systems and found my way home after about three months of hospitals. And when I did return home, even before my injury, when I was … Actually, the moment after my injury when I was pulled onto the beach, I remember my dad running down to the beach, my friends got him, and he looked at me and I was like, “Dad, what about our tea time tomorrow?” It was something that I was looking forward to all summer long just to be able to play with my dad. And he’s like, “Josh, we’re not going to be able to make this one.” But when I did return home, I always just had a dream of the game of golf and being able to play again, but physically, I couldn’t.
So that’s just a little bit about me. Or the other thing I would share is I started a nonprofit and went through the vocational system in my state of Maryland, and ended up going from community college to undergrad to law school, and now I’m a practicing attorney for the last 13 years. So that’s a little bit about me and I’ll throw it over to Andrew.
Andrew Mitchell:
Hi, Jack, Michelle, esteemed audience. Thanks for having me today. So Josh and I have been friends since I think fourth grade, and Josh beat me up on the tennis court and our lives went different directions and we reconnected with each other while we were taking a few classes at a local community college and we both connected over poker and golf. So I was on the slingshot with Josh, I don’t know, starting, what would you say, Josh, like 12 years ago maybe was the first time I ever did it with you.
Josh Basile:
12, 15 years ago was when this all started up.
Andrew Mitchell:
Yeah, something in that range. So we stayed friends and got on the golf course maybe two or three times a year, and I was in between degrees at UMBC and Josh needed a little help with daytime caregiving. I decided to help out for just a few weeks, and then a few weeks turned into March 14th, 2020, and I was very lucky to have a job. So I just decided, “Okay, I’m going to take everything I can learn from someone who excels in his field, and I’m going to take everything I can learn about caregiving and just see what I can make of this.” And in that experience, we found that golf was one of the only things we could do that was safe during the lockdown. So we had such a good time golfing. We came across a piece of equipment that Rick Shiels had done a video on, the Swingless Golf Club, and that was the final piece of the puzzle to get us starting from the tee box with everybody else and had an incredible time putting all those pieces together. Josh’s invention, the pendulum putter, his way that he was able to put the slingshot together with all the degrees and the degrees that we use on the pendulum putter, degrees, power, et cetera.
And then the Swingless Club, it was such a good experience being able to get out there and play and sharpen Josh’s skill with the game that we collectively we’re chewing on this dream of how do we bring this to the rest of the country because there was just no way that we were going to be the only ones enjoying it the way that we were. So we applied for a grant from the Craig Neilsen Foundation last year. So 2024, around April, we got the confirmation that we got the grant. I want to say was it late August last year?
Josh Basile:
Yeah, it was during the Adventurous weekend. We were bringing 50 families to an annual event that we do in Virginia Beach. So it was mid-August, I could tell you the date.
Andrew Mitchell:
Yeah. And so I got the news when Josh invited me down to just put on a clinic with the folks on the Adventurous weekend and changed my life. So here we go. This is what I do now and I’m trying to build awareness for the program. I’m taking folks out on the course. I’m hosting events with Josh, and you’ll meet our other guest on the podcast here, Kate Strickland. She’s one of our fiercest competitors in the program. And this has just been a dream. It’s a dream come true to be able to spend my life helping out the disability community, the mobility disability community, and to be able to permanently grow the game of golf.
Josh Basile:
So Jack, just to give you another little background of the golfing journey per se. Basically when I did return home from the hospital and being paralyzed below my shoulders, I started going back out to golf courses with my friends and family, and I would always get on the course, but I’d be a spectator. And for about five years after my injury, just I kept going back and I loved it. I loved being out there. I loved being surrounded by green grass and by trees and by the wind, by the sun, and that was just super special. But every time I left the course, I would always be frustrated because I mentally had the game to play, but I couldn’t pick up a club or grab a club and swing it like I used to. So one night, I ended up having a dream of this putting apparatus that could swing back and forth like a pendulum off of a pole and just go back and forth, back and forth. And next thing I know, that next day, I went to the hardware store, got all this PVC pipe, an old putter, and rigged together the pendulum putting device that could strike a golf ball and was able to bring it out to my local golf course and it worked.
And so that said, you know what? I could get the ball in the hole. How do I get the ball to the green? And at that time, tested a bunch of things out. We found that the easiest way to advance a golf ball was a slingshot where you could have somebody put the ball in the pocket and basically I’d be behind a caregiver or a family member or friend who would be operating it and I could direct them pulling it back. And depending on the power you pull it back or the angle of the slingshot in the air, you can basically drop it wherever you want on a golf course, anywhere from five yards to sometimes over 150 yards depending on the strength of the person. They can go more than a football field and just drop the ball.
So that’s how we played the game of golf. We called it slingshot golf for the first 10 years. And then Andrew was mentioning during the pandemic, we saw this video of the Swingless Golf Club that uses blank and nail gun charges to shoot a piston out of the face of a club. So you actually just put it right behind the ball. And as the adaptive golfer myself of Andrew’s raise his hands, lowers his hands, basically manipulate the face of the club so I can actually shape the shot that I want, and then the piston comes out and strikes the ball and you can calibrate a shot anywhere from 75 yards to 200 plus yards, which now let us move back to the tee boxes to play the game of golf.
And since then, we’ve now brought it out to hundreds, probably over 500 players have experienced our form of adaptive golf, and we’ve really brought hundreds of players since the pandemic to really experience this new form of AdapTee Golf.
Jack Rosen:
So I have so many questions about AdapTee Golf, but I think since you mentioned new players, I think we should also mention we have Kate here who has picked up AdapTee Golf recently and I’ve heard from you guys is quite good at it. So Kate, why don’t you tell us a little bit about how you came to AdapTee Golf and what it’s been like for you?
Kate Strickland:
Sure. Thanks, Jack, and thanks for having me on this podcast with you all. I came to AdapTee Golf mostly by chance. I am an attorney in DC. I’m also quadriplegic from a spinal cord injury when I was a cyclist almost, I guess, 11 years ago. And I recently moved to the DC area to start a job with a law firm in DC. And when I was in law school, I was connected to Josh because he was a quadriplegic attorney who I could reach out to as a resource to just ask how to be an attorney while also disabled, which seems a bit more challenging than one might otherwise expect.
And so I had this connection, and when I moved to DC, I had reached out to Josh just to say, “Hey, I’m here. I’m excited to actually be in your area now that you do all of these great things.” And one of the first things Josh asked me is if I wanted to go golfing with him the very next day, actually, for his birthday. And as someone who has never played golf before, had never really seen golf beyond just watching it on TV when my grandparents were over, I had no idea how we were going to play golf, but I figured if Josh could do it, I could do it. And so I said yes.
And then the next day, we went out to Sligo Creek Golf Course, which was a bit intimidating honestly at first because I got up to the course first and I felt very out of place when I first got there because I was a person in a chair. And everything I knew about golf up to that point was that it was a game for people without disabilities. And it was … I wasn’t sure how these golfers are going to view me in my chair at this venue. And what I found out that day is that, first of all, Sligo Creek is the most inclusive and welcoming place that I could have gone to for golfing. And also that Josh and Andrew have cracked the code and we definitely can golf and it’s a lot of fun and it is a wonderful way to get outside in the sunshine and fresh air, especially me as an attorney who I spend most of the time behind my computer. So I’ve enjoyed golfing ever since I started, which was, I guess, mid last year, mid to late last year.
Jack Rosen:
And I guess what has drawn you to golf, I mean, out of the various adaptive sports? I know you got this opportunity with Josh. I guess for me, and I’ll get more into this, but one thing I really like about golf is that I always joke that for four hours, I get to forget all of my problems and instead focus on a new one, which is I’m not very good at golf, but it gives me just a few hours to clear my head. What’s it been like … What does it mean to you?
Kate Strickland:
I think it’s similar. Being out on the golf course, it’s generally peaceful. Of course, there’s some frustration when the ball doesn’t go exactly where you’re anticipating it to go. But it’s a really fun way to use my brain and to think about distances and angles and powers and really try to make the ball go exactly where I want it to go and I can stop thinking about all of my caseloads and whatever else is going on in my life. Plus, I, so far, have gone out with Andrew as my caddy and sometimes Josh joins, sometimes it’s just Andrew and I, and it’s just so fun to hang out with like-minded people who really enjoy what we’re doing.
So I’ve always just wanted to go out to hang out with friends, but also to … I mean, the way we play, sure, we’re not actually swinging a club, but it is golf and we are facing the same technical, mental calculations and challenges that any golfer would face. And it’s a really cool way to get back into sports without, for me, the fear of tipping over in a kayak or some of the other adaptive sports that are out there. So I’ve always enjoyed it. Plus, I love being outside. I was a cyclist, so I used to spend all day on a bike in the sun and this is a great way for me to get back outside in a bit more controlled way.
Jack Rosen:
And Josh, I guess I’ll pose the same question to you. I mean, I think I have a guess what golf means to you given, as you said, you dreamed of a way to get back on the course and then made it reality. But tell me a little about what golf means to you.
Josh Basile:
There’s a little noise going by me, just give me one second. For me, golf is sport. Sports before my injury, in many ways, defined a big part of my childhood. I loved the ability to compete. I love the ability to push myself to be in a situation where I had to make that shot or I had to come up with the right next move. And being able to get back out there after my injury was really something that was missing from my life for so, so long.
And when I was finally able to put together the puzzle of making the ability to advance a golf ball from tee box to fairway to green and into the hole, it just was like one of those moments was like I’m onto something. Or together with bringing out other people, we tweaked it so many different ways to get it to the game that it is today. It’s not only fun, but I feel like an athlete again, even though I’m paralyzed below my shoulders. I literally cannot move my arms, my fingers, my hands, my legs. I can dance my shoulders a little bit, and I can move my head left and right, and I’m out there on a golf course. And there’s times because the game of golf that we created, it’s like a live video game, there’s very little human error. You just really have to make the right decisions and shape the shot and then execute.
And with that being said, at Sligo Creek where we take a lot of families, and we really play on public golf courses across the US, we played overseas, we played around the world. There’s a lot of courses in this world. But with that being said, we played a lot at Sligo to the point now that we shoot under par. We have a negative handicap, which, in the golfing world, it’s funny that they use the word handicap, but we’re usually the best player on that course that day, which being paralyzed, it’s funny to see that. And we get out there, and I know later on, we’re going to talk as a little teaser about what Kate and Andrew and I did last month at Sligo in a golf tournament, a match play event, that we were participated in. But it’s one of those things that it’s a game for all abilities.
You don’t have to have a spinal cord injury to play it, you just have to have a willingness to try. You can be paralyzed, you can be an amputee, you can have any disability or no disability and experience the game of golf the way that we are approaching it. And it’s a great way to turn heads, but it’s also a great way to have fun. And even at like Saigo Creek, it’s one of those inclusive places where they even have soccer golf there, where you actually can play golf with a soccer ball, and they have different holes lined up throughout the course.
It’s just golf, to me, is such a beautiful way, as we’ve all said, of getting out of the house, forgetting about your day-to-day life and problems and just having fun or struggling through a course, which is that mental battle and the puzzle of getting from the start to in the hole, which luckily at Sligo, you got nine holes, which I even think over time I’m actually enjoying it even more than 18 holes because golf can be pretty long, and having just nine holes, it’s just the perfect taste. A lot of people love 18 because after the first nine, they feel like that’s the warm up. And then the back nine, they can really get their game on. But anyways, that’s a little bit about AdapTee Golf that I wanted to share.
Michelle Bishop:
You guys are actually making me want to take up golf now. It sounds amazing. I also am someone who enjoys being outdoors on a beautiful sunny day. Let me say this, outside, I’m not outdoorsy, I’m outsidey. I’m not trying to be hiking in the woods. So I feel like a golf course might be the right zone for me to get my outside time and my sunshine without woods, but I digress. I wanted to ask, as someone who doesn’t know a lot about golf, with AdapTee Golf to … I guess everything that I know about a golf caddy comes from what they tell you in the movies and on TV where the caddy … You have a relationship with your caddy, maybe they make some recommendations, I suppose, when you’re getting ready to swing or picking your club or I’m really trying to sound like I know what I’m talking about. And I was wondering to what extent AdapTee Golf mimics that relationship between the golfer and the caddy or if it’s a little bit different than how we think of that traditionally.
Andrew Mitchell:
I’m happy to take this one. So when I’m performing at the caddy or Josh and I are out there playing around together, I have the job of it being a conversation about I see this putt this way and I think it’s got this much break and we think it’s a 35-degree putt and this is our aim point. All these little things that … In able-bodied golf, that’s what a caddy would be doing. And so in that respect, it’s the exact same. And Josh and I do not agree on most things as we get up to the ball, but we’ve done this for so long that we whittle things down to a point where we do agree and it’s just a very quick back and forth. And the point at which AdapTee Golf differs from able-bodied golf is that my job as the caddy is to try to confidently relate the information I see in front of me to Josh so he can make the best possible decision. But the moment Josh says to me, “All right, I’m ready to address the ball,” that’s when all my input and my decision making stops, and I am a conduit for Josh’s shot. So even if I think he’s wrong about something, that’s now irrelevant, Josh has said, “I’m ready to hit my shot. I want your hands here. I want the club face there. I want this power level.” And that’s no longer my decision.
And so it’s my job from there to just faithfully carry out every single thing that Josh tells me to do. And more often than not, when I think I’m right and I’m confident about it, and Josh, even after hearing that, will say to me, “You know what? Even after all that information, I still think you’re wrong,” I’m going to do it my way. I would say nine times out of 10, Josh is right. And that’s just how it’s played out in the years that we’ve been playing AdapTee Golf together. And that’s what you have to do as a caddy and it’s really tempting to try to make a micro change or you want your player to do as well as they possibly can, and you think that you’re helping by making a small change. But as a caddy, if you make that small change, you are taking autonomy away from the player. And that’s not your job. I mean, the job is to make sure that people play well. Your job is also to make sure that people make mistake and then learn from them. For me, that’s one of the biggest joys in golf is screwing up a shot and standing there and going, “Wow, geez, what went wrong there and how do I get better at it next time?”
Michelle Bishop:
That’s really helpful, Andrew. Thank you. It strikes me that the AdapTee Golf mirrors that relationship between the golfer and the caddy, but it also works in terms of disability rights and how we think about accommodation and adaptation in general, right? We talk a lot about independence and what that word means. And in the disability rights movement, independence doesn’t mean that you have to do everything completely on your own with no assistance. What it means is you’re in charge of how it’s done, and that you should still be in control of your life and your physical person, and that the person who is assisting respects that. So it just struck me, as we were having this conversation, how well this way of golfing really marries the traditional role of golfer and caddy, as well as the role of a person with a disability and their assistant. And I just think that’s really cool. And I can imagine as a disabled golfer, that must feel … It’s got to feel great to get out there on the course, but also to still have that sense of independence as a golfer.
Josh Basile:
There’s no doubt about that. As a high-level quadriplegic, I’m very dependent on so many aspects of my life, but with technology and helpful hands, I become independent, and I love being able to get that out there with Andrew or whoever else I’m playing with. Luckily, it’s Andrew a lot these days. And when I do get out to play, it is a team effort. But at the end of the day, being able to have the ability to make those choices, it gives me power on the golf course. And it makes me feel not only as an athlete again, but also just like me. And I know we all come with our own unique abilities and everything by my injury and paralysis has made me into the advocate I am today.
And I love everything that my injury has taught me, but at the same time, being able to get back out on a golf course and compete again, it’s just I’m pulled there, and I couldn’t do it without Andrew and without technology. And we have now the ability to have the Swingless Golf Club, the Power2Golf Club, it’s what it’s called. We use the slingshot and then we have the pendulum putting device. And together, all those different devices, we’re able to play golf at a very high level and have fun, and we get to turn heads, and we get make memories with friends and bring out new people like Kate to experience it. And it’s such a blast.
And right now with the grant that we got, we’re bringing out to six regions across the country, and over the next two years, we’re having so many other regions call up to us be like, “Could we get it before then?” And we’re like, “Yes.” And we were able to talk through what they need to do to get the right equipment to understand how to get an ambassador to be able to train the different caddies or the family members, as you would say, to be able to experience it. But our goal is to get universal equipment and out to different sites for anybody in that community to use and then play.
Jack Rosen:
So I think we should take a step back there. I mean … So you came up with this originally as a way for you to get back into golf, and now it’s become something, it seems a lot bigger than that and that you are trying to get as many people into AdapTee Golf as you can. I mean, how did this go from something that was more of a personal pursuit to a organization with a mission to spread AdapTee Golf?
Josh Basile:
It really started with my nonprofit. So 10 months after my injury … So this is back in 2004. So 10 months after that would be 2005. So I was injured August 1st, 2004. I had so many incredible mentors come into my life and key pieces of information that changed the trajectory of how I transitioned into this new world of paralysis. And that’s when I founded through friends and family the Determined2Heal Foundation. So Determined, the number 2, Heal Foundation with the goal of simplifying the transition into life with paralysis. And over the next two years, we ended up creating spinalpedia.com, which is now the world’s largest video mentoring network for the paralysis community. We have over 39,000 videos broken down by physical functionality. And you put your exact movement in and, all of a sudden, you have a thousand mentors to show you how to tackle all things of daily living, transferring, driving, sport, getting back to school, parenting, you name it. We have a video for basically everything. But that was how we were able to mentor families in their homes.
And then we started bringing families out on adventures to iFLY, to do indoor skydiving, to go surfing, to do adaptive sailing, to do all these programs that presented itself locally. And with my nonprofit, we were able just to get hundreds upon hundreds of families that were like, “I’m willing and able to go have some fun.” And then the nonprofit just organized it and paid for all the adventures for the families. So that’s … We started bringing all these adventures together and, at the same time, paralaw was playing slingshot golf and getting much better at it and fine-tuning it. We ended up bringing it down, did an adventurous a week down where we sailed a catamaran from Key West to Cuba and introduced slingshot golf to a Cuban paraplegic in Cuba, and ESPN documented it and we sailed back. But it’s been an adventure, to say the least. But along that adventure of mentoring families, I’ve got to know tens of thousands of community members across the country.
And when we do different clinics and other things, I always have a long list of people that I can call to in my Rolodex to say, “You want to have some fun today or do you want to come out and we’ll do a Topgolf driving range event where the Topgolf is like” … It actually has a computer chip in the ball and they can bring you food to your place on the range. And it’s like you can bring 20 to 40 people out and have a good time that way, but it’s evolved over time of just loving being surrounded by community and having the resources from friends and family to fundraise to make sure that all these adventures are free for families is how this is going. And we just got this amazing grant to bring it to six regions across the country, which is elevating us to another level and actually has given Andrew, this is his full-time job, he’s the director of AdapTee Golf and he’s been on a mission to get this.
And we flew out to Vegas last month. Andrew’s flying to Nashville next week, to Minnesota next month, and here we go. It’s just the beginning to something big. But I guess the other big thing, just to piggyback off, just to share this with people, is one of my biggest motivators is to create … We ended up doing this adaptive golf tournament in Pennsylvania two years ago and we went to play in it. And it was the Pennsylvania AdapTee Open and the organizer of it was incredible. They invited us in with open arms. But at the end of the day, there’s all these different classes for disability where everybody plays by the same rules within that class, depending on your unique abilities, whether you’re an amputee, spinal cord injury, you have cognitive disability, low vision or blindness, whatever it might be, of what your unique abilities are, there’s usually a class to play at.
And if you fall in that class, then you get to compete against everybody else based on the modified rules of golf. But unfortunately, there’s not a class for people that cannot swing a club and use an adaptive device and caddy. So we started testing it out with an adaptive opens to now create the rules behind AdapTee Golf and be able with the regions that we’re going to be bringing it to across the country, we’re going to have regional tournaments, then we’re going to fly out all the winners for a national tournament where we can show, through these rules, we can create a new competitive class and change the modified rules of golf so that we can compete.
When I did this tournament in Pennsylvania, I played and I played really well, but my score didn’t count because there’s no class for us to play in. So it’s … First year, I think I took fifth place. Second year, I tied for first place, but there’s a big asterisk next to my score basically saying it does not count. So that’s another big inspiration to figure this out and to get competition going and to learn from competition.
Jack Rosen:
No, absolutely. And you stole my next question because that was exactly what I wanted to ask about, but I think we should just take a minute to just expand on what you said there and explain for the folks at home, especially the nongolfers. So just for context here, golf is a very rules-governed game, even though a lot of people, myself included, are sometimes a little more casual about the rules if we’re playing on Sunday. Don’t always count the penalty for sinking one in the water off the tee box because I’m out there to have fun and I’m not on the tour. But if you’re playing golf in a competition, there is the USGA rule book that governs … I think you might agree, Josh, it would be fair to say, it governs pretty much everything. And there are modified rules for people with disabilities. It’s, I believe, Rule 25. And as Josh alluded, there are various modifications or what we might even call accommodations for people with disabilities, but as Josh is pointing out here, that the rules do not cover when someone is unable to swing a club. So it is so exciting that you’re trying to build this new category of golf. And I assume with that in mind, are you hoping to get a modification to the USGA rule book?
Josh Basile:
That’s the dream right there. One of the things I’ve learned since my paralysis is the importance of mentors and being a mentee. So basically, for the rest of my life, I’m going to be mentoring and I’m going to be a mentee. And there’s always more to learn. There’s always more to give. But I’ve had some really incredible mentors in the game of golf, especially in the adaptive world, of being able to connect with other national organizations that are bringing the game of golf to all abilities, to Andrew connecting with a past PGA professionals or the CEO of the PGA, things of that nature. We basically picked all their brains and even people on the governing committee, what do we have to do to actually bring this? And they first said, “You need to test it out. You need to get people to start playing the game and then you need to bring it into a competition and learn what works, what do you face, what are the different parts of the game where you’re not thinking of a rule to make it so that it’s even and consistent for everybody else so everybody plays by the same rules.”
So for us on the tee … We call it AdapTee Golf, so that’s A-D-A-P-T-E-E Golf. So it’s got the T-E-E, AdapTee. And so we actually use tees, different level, different heights of tees. So off the tee box or on the fairway, you can use any of the different heights of tees that you want, but if you end up going in the rough, it brings you down to a lower level tee, which gives you less ability to shape a shot and to be able to have a higher trajectory for it to land on a smooth part. Or if it lands in a bunker, depending on where the bunker is on the course, that’s right on the green side, or if it’s a fairway bunker, you have a different tee that you could use. But basically, wherever the ball lands, you have the ability to use a tee. Or if you don’t want to use a tee, you don’t have to. I always choose to use it because it just gives you more clubs in the bag to choose from in my opinion.
And then there’s different rules of … Because a lot of times, our power wheelchairs are so darn heavy, we never go onto the green itself, so we go around the greens. But thanks to the pendulum putting device, the way that it’s set up, you can actually see the lines on the back of the putter and be able to manipulate the club through Andrew’s helpful hands or the caddy’s helpful hands to choose the correct angle and the path that it’s going to go. And then on the shaft of the club, there’s a protractor with different degrees. So I know a one-degree putt to 180-degree putt, there’s a different … I can choose a five-foot putt or 120-foot putt depending on the degrees that we select. And then when the ruler arm points to the ground, it actually just swings, connects to the ball, and you have that distance, but obviously, golf is tough because you never get really a flat putt. It’s usually uphill, downhill, breaking left and right, golf’s hard. It’s a very hard sport, but you got to make the right decisions.
But basically, with the modified rules of golf, we’re coming up with all the different ways that eventually everybody’s going to play by the same rules, and we’re going to have those tournaments and we’re going to compete again, and we’re going to hopefully learn and show the world that this can be a possibility. And one of the coolest things is this summer, on the Washington DC area, the Adaptive Open, the US Adaptive Open, is coming to Woodmont Country Club this summer in July. And the best golfers in the world, adaptive golfers in the world, are coming out to compete in that. And they have all the different classes other than AdapTee Golf. But to be able to see that and experience it and learn how they do it, there’s just always more to learn. And I’m so excited about that coming this summer.
Jack Rosen:
That is so exciting. And we should definitely also include a link in the show notes for people to learn more about the Adaptive Open. There is so much more I want to ask you, but I think I might close with this. Josh, from the sound of it, I have roughly similar stock yardage to you with the driver. How do you play the ninth hole on Sligo? I always end up a little short on that dogleg right and then I’m trying to get it through the trees. What’s your strategy?
Josh Basile:
So this is a … The last hole is the ninth hole. It’s the longest hole on Sligo. It’s a par four, but, yeah, it’s got this big dogleg right from the four tees where we play at, instead of playing it smart and shooting it straight down the fairway and then taking another shot to the green. I actually go over these huge ginormous trees where I get to cut the distance in half and I just skyrocket it at 200 yard power straight up at the air, and then it just drops on a dime right on the green, and it’s the coolest. I remember the first time I attempted it, I was like, “I’m going to lose some balls today.”
And then all of a sudden, it went over and landed near the green, and then we were like, “All right, I think we have the ability to have a little shortcut and go for an eagle putt on this last par four,” which we’ve been doing this match play event for the last … We’ve done two match play events against the head pros at the course. We actually did it a few weeks ago with Kate, but we did it last September as well. And the last two years, it came down to the final hole, and that’s our hole to bring it home on. It’s so much fun. But Kate and I partnered up together to play against the head pro and his son who both worked there and we had a gallery and everybody came out. It was such a fun way of demonstrating how we approached the game of golf. And Kate was an incredible partner and it was a really fun day to have fun with her friend and compete side by side. It’s really the first time I’ve ever competed side by side with a quadriplegic. And we did it together. It was so cool.
Andrew Mitchell:
And in terms of how the competition plays out, Dave and Nick, they did a roller mode. They know the pressure’s on when it comes to the ninth hole because they’ve seen Josh nail that shot so many times. So we get to roll into that final hole feeling pretty confident. So it’s a lot of fun to be able to put the pressure on on your competitors like that.
Jack Rosen:
That’s is … I mean, thank you for sharing both what it means to you in a competition. And I think I’m now going to lose a sleeve of balls Sunday when I try to shoot it over the trees because you got to try to go for it.
Josh Basile:
You got to get high. That’s the key. Both Dave and his son ended up trying to go over the trees and they didn’t hit it high enough and they lost both their balls in the woods, but because we were actually … Yeah, it’s fun to go after it and I’d love to go out with you and play, and maybe Kate and I can have a fun round with you and it’d be a fun local adventure to go on.
Jack Rosen:
Absolutely.
Michelle Bishop:
That’s like another podcast episode. I think we need to make that happen.
Andrew Mitchell:
I mean, I think it’d be pretty cool if we could find a way to just have us mic’d up for nine holes or even just a couple holes. I think it would be interesting to hear … You’ve heard a lot about how Josh thinks about and ensues the game. I think it would also be really interesting to get that new player perspective. What is Kate saying to me when she is thinking about setting up a shot and it’s all Kate? This is not Josh’s decision making anymore. I don’t know. I think that might be fun for folks to be able to hear and getting a new player’s head.
Michelle Bishop:
Okay, now I’m thinking video footage.
Kate Strickland:
I would just chime in and say definitely, Andrew. And for anyone listening who’s thinking, “Wow, maybe I can’t golf because Josh is so experienced and he’s been doing this forever,” I’ve played five rounds of golf at Sligo Creek. That is it. I had no golf background before that. It is still welcoming. It is still inclusive. You are still able to play. And from the very first round, Andrew, as my caddy, was able to explain the golf terms, the things I was looking for. He still confirms when I ask. I should know this by now, but I always ask, so I’m shooting for this particular position and making sure I’m looking at the right place.
And the whole program is so welcoming and great at educating new players that I never had anxiety after the first hole that I wouldn’t be able to do any of this because I had absolutely no background in golf. So just a quick reminder that anyone can play and it is super fun to learn. I can’t say I’m perfect. I will never be perfect at this game. And my balls still occasionally will randomly cut right or left when I wasn’t anticipating that. But you do learn and you do start to remember some of the lingo, like eagle putt, and birdies, and everything like that. I’m slowly learning, but it is accessible. And don’t be intimidated even if you don’t have a background in golf.
Andrew Mitchell:
And if people listening, do watch our Sligo Creek match, which I think we’ll be able to send a link over to you guys. We worked with a great film crew and they did a fantastic job telling our story out there. But you’ll hear right at the beginning of the video, Kate say, “Ooh, okay, I think this is going to be straight. Andrew, that was not straight.” It’s like right at the top of the video. I think that was our first tee shot, but we figured it out.
Josh Basile:
We ended up taking that shot, by the way, Kate, that you said was not straight. It was a great drive, I thought. And just for anybody that’s here just today, this AdapTee Golf is a game for all abilities. If you think that you’ve been blocked out from playing just with a willingness to try and the right equipment and helpful hands and getting out there, just showing up, getting out there, you might find a new sport in life that can be a lifelong sport or you might find this sport that you don’t want to do. But if you don’t get out there and try it or experience the world around you within any activities, you just never know. And for anybody that wants to learn more, go to adaptee.com or I’m sorry, adapteegolf.com. And we’ll have a URL in the description or we’re going to have Andrew’s … It’s Andrew@spinalpedia.com and Andrew could share with you how you could bring it to your region. And just basically, we’re here to expand the game of golf to all abilities. So just we can’t do this journey without you. So if you’re interested, hit us up. And again, Jack, Michelle, thank you so much for having us on your program today.
Michelle Bishop:
Okay, guys, I’m in. You’ve sold me. We’re going to go. I’m going to learn how to play and I’m going to learn the lingo and everything. We’re going to bring our film crew. Our film crew is Jack, literally just Jack. Actually, Jack wants to play. We’ll make Stephanie work the camera. And we’re going to make this happen. I sense a short film. Stephanie’s blind. We’ll get somebody else to work the camera.
Josh Basile:
I love it. Sounds like a …
Andrew Mitchell:
And don’t forget the outfit.
Josh Basile:
… great day.
Andrew Mitchell:
It’s a key part of the game. We got to look good to feel good. Oh, yeah.
Michelle Bishop:
Sold. Stephanie and I are on this. We’re going to learn golf. We’re very into the fashion. All right, deal.
Andrew Mitchell:
Love it. Love it, love it.
Jack Rosen:
Wow, that was a really fun episode. I’m glad I managed to finally get a sports one.
Michelle Bishop:
I know this has been a dream of yours for a long time, and I’m happy I could be a part of it. And I actually learned three things about golf, and we’re going to go golf with them. And Stephanie’s going to record and work the camera, right, Stephanie?
Stephanie Flynt McEben:
Of course, especially working the camera. I’m really good at camera-ing.
Michelle Bishop:
You have such an eye and they definitely call it camera-ing.
Stephanie Flynt McEben:
Yes.
Michelle Bishop:
Yes.
Stephanie Flynt McEben:
Exactly.
Michelle Bishop:
And not filming or recording.
Stephanie Flynt McEben:
Right, exactly. Camera-ing.
Michelle Bishop:
Right?
Jack Rosen:
Yeah. That’s one of my core job functions is camera-ing.
Michelle Bishop:
Camera-ing and podcasting and social media-ing.
Stephanie Flynt McEben:
Yes.
Jack Rosen:
Yes.
Stephanie Flynt McEben:
I’m here for it. You know what else I’m here for?
Michelle Bishop:
Oh, no, this is a joke, isn’t it?
Stephanie Flynt McEben:
A joke and it’s slightly athletic. So anyway, why did the bike fall over?
Jack Rosen:
Why did the bike fall over?
Michelle Bishop:
The bike fall over?
Stephanie Flynt McEben:
Got any guesses for me?
Michelle Bishop:
I’m so scared.
Jack Rosen:
I have no idea where you’re going with this.
Stephanie Flynt McEben:
Come on. Come on. Somebody’s got to guess at least once.
Michelle Bishop:
I have to take Lexapro to get through this part. I have no guesses. Okay. Stephanie, why did the bike fall over?
Stephanie Flynt McEben:
Because it was too tired. Get it?
Jack Rosen:
I get it.
Stephanie Flynt McEben:
Are you okay? Is Michelle laughing?
Michelle Bishop:
Just saying, I get it very dryly.
Stephanie Flynt McEben:
Well, you heard it here, folks.
Michelle Bishop:
That was a good one. Before we wrap up, guys, I have to say a very special shout out on this episode to close family friend, navyman, and all around, good guy, Andy. You may not know, he is the most avid listener of this podcast. You may recall last year, two years ago when I called out my mom when we found out she didn’t actually listen to my podcast, and I threatened to call her out on every episode until someone told her, it was actually Andy who came to our rescue and made her start listening. And when I saw him recently at my niece’s christening, he reminded me that I have not given him a shout-out in a while. So, hey, Andy, we love you. Thanks.
Stephanie Flynt McEben:
OMG. Yay, another listener. Thank you so much, Andy.
Michelle Bishop:
So now we … I want to say that we have two, but I’m pretty sure my mom hasn’t actually been listening.
Stephanie Flynt McEben:
What?
Michelle Bishop:
Yeah. Yeah. So we’re going to have to, Andy, get on her again. Okay. Thanks. Appreciate it.
Jack Rosen:
And shout out US Open winner, J.J. Spaun, who I learned has a disability. J.J., if you’d like to be on the podcast, you can reach us at podcast@ndrn.org.
Michelle Bishop:
J.J. Spaun’s like the coolest name I’ve ever heard. Jack, do you want to tell the people where they can find us on social media?
Jack Rosen:
Yes, you can find us on Facebook, Twitter, Instagram, LinkedIn, Bluesky, threads. Probably not TikTok, I don’t know. I’ve given up on the whole concept.
Michelle Bishop:
Haven’t we posted to TikTok?
Jack Rosen:
No.
Stephanie Flynt McEben:
I thought we had.
Jack Rosen:
We have never posted to TikTok.
Michelle Bishop:
Oh.
Jack Rosen:
And if I have my choice, we never will. Until next time, folks.
Stephanie Flynt McEben:
Bye.
Congress? The budget? What’s the whole deal there? You asked, we brought someone on who answered! NDRN’s Deputy Executive Director for Public Policy Eric Buehlmann came on the podcast to explain what’s going on with the budget and how it impacts the funding NDRN and the Protection and Advocacy network receives.
Full Transcript Available at: https://www.ndrn.org/resource/ndr-may25/
Tell Congress to Protect our Programs: https://secure.everyaction.com/I6avR5LSvUamWdNZNIgMew2
Jack Rosen:
And Michelle, do you want to kick us off?
Michelle Bishop:
Are we recording? I’m totally sending a text message. Okay. Okay, I’m ready.
Stephanie Flynt McEben:
Well, now we have our whole… Blah. Now we have our cold open.
Michelle Bishop:
Of course we do work on these. We somehow put out an episode every month. Okay. Wait, wait, wait. Are we doing the opening for the whole episode or are we just getting our conversation with Eric started?
Stephanie Flynt McEben:
I thought we were doing the conversation with… Wait, I don’t care.
Jack Rosen:
I guess just with Eric. If we have time at the end, we’ll do an open and close, but here, I think I can-
Michelle Bishop:
I know, but I don’t know how to frame what this conversation is. It might be-
Stephanie Flynt McEben:
Like spilling the tea on all things. I don’t know.
Jack Rosen:
That will be the podcast title, but-
Stephanie Flynt McEben:
I love that.
Michelle Bishop:
Thank you.
Jack Rosen:
Just ask me who our guest is today and I think I can take it from there.
Michelle Bishop:
Okay, deal.
Intro Music Plays
Jack, tell the people who our guest is this month.
Jack Rosen:
So today, we have on Eric Buehlmann, NDRN’s director of public policy and Stephanie’s boss. He is here today to… Folks have a lot of questions about what’s going on with our funding. We’ve seen a lot in the news about proposed cuts to various programs that the P&A network supports, and folks within and throughout the network have a lot of questions about what’s going on right now. So we’re bringing in Eric Buehlmann, NDRN’s director of public policy, congressional insider, and expert on all things budgetary.
Stephanie Flynt McEben:
And fierce leader of the public policy duo here at NDRN, so yeah, Eric, if you want to spill some tea.
Eric Buehlmann:
Thanks for inviting me on today. So I feel overwhelmed by the introduction in terms of being a congressional expert on the budget, but it is a very confusing and hidden process in a lot of respects, but also very scary because as you all well know, our members, the protection and advocacy and client assistance programs depend on the federal funding to provide the great advocacy work they’re doing. I guess from the beginning, the president is supposed to propose a budget, and we haven’t really seen a full budget yet proposed. We have seen some things leaked which were very devastating to our network in terms of getting rid of what I call the mothership program or defunding the mothership program, the Protection and Advocacy for Developmental and Disabilities program, but also in the same breath, the voting program, and then also severely curtailing the mental illness program, PAMI.
So that leaked budget was very scary, but is also one of those steps that most people don’t ever see. It usually takes place the year before, so in this case, this would have taken place in 2024. That kind of discussion between the Office of Management and Budget and the agency, Health and Human Services would have taken place. But because we have a new president that came in, those discussions were taking place earlier in 2025, but that’s also just one step.
So the agency does get to push back on any proposal that they get from the Office of Management of Budget, and our understanding is that there was some pushback. We don’t know exactly what that pushback is, but that could mean that there aren’t defunding those programs. It could mean reductions in the amounts of cuts that existed. It could mean anything.
Most recently, the president released what’s called a skinny budget, and that is usually what happens when a new administration, a new president comes in, because they haven’t been working on it for the last eight, 10 months. It’s hard to produce a 1,200-page document, 1,200 pages plus that the president’s budget usually is, so you get what’s called a skinny budget, which just has top line numbers. You can see the problems that may exist in those top line numbers with huge reductions in what they released in what’s called discretionary funding. That’s what’s done by Congress, and especially the non-defense side, which is where all our funding is. But you can see by just the sheer fact of a 23% reduction, which is just a massive reduction in that kind of funding, that that probably has a negative impact on our programs, but it doesn’t get down to the detail of those kinds of levels in terms of being able to know what the impact is on every single program. So we know this giant bad number out there, but we don’t know what that specifically means for our individual programs.
We may later this summer. They may release a full budget. They don’t have to, but they may release a full budget at that point and then we’ll know what these implications mean, but again, that’s just another step in the process. Then comes the work of getting Congress to pass the appropriations bills, and that’s their job. They’re supposed to fund these programs and make the decisions. Ultimately, it’s not the president that makes those decisions. It’s Congress that has that authority to decide what the appropriations are going to be, and that’s where our work needs to be, is making sure that Congress understands the importance of all of our programs and that they’re out there and that they do wonderful work and that they need to be funded, not only just funded at the same level. They need to actually have increased funding so that we can do more and more work that we really need to do and that we know is out there.
And so that’s really where our focus is right now, is making sure that Congress gets the important work of our members and our work and the work you guys are doing. And so therefore, we’re making the case to Congress and then hopefully over the next couple of months as Congress begins to consider these bills and decides what their funding priorities are going to be, that they may be. I would be surprised. I think right now, we go for level funding is a great win given what we’ve seen out there for numbers and that hopefully we can maybe get an increase here or there, but that’s where our focus is right now, is making sure that Congress understands and that over the next couple of months, that they will fund our programs. I will stop talking for a second.
Michelle Bishop:
Eric, I heard you mention PAD program and PAMI program. Did you mention that Pavo was also zero allocation in that budget?
Eric Buehlmann:
I thought I did.
Michelle Bishop:
I hope so. I was going to say, “Eric, I’m right here.”
Stephanie Flynt McEben:
Yes.
Michelle Bishop:
I’m right here.
Eric Buehlmann:
I said the voting program.
Michelle Bishop:
Oh, okay. You did say, yeah. I just missed it. I was getting ready to come out swinging, guys, because-
Jack Rosen:
No, he did. He also acknowledged that they’re trying to zero out the program that funds all the work our PAVA folks do, including-
Michelle Bishop:
Okay. My bad. My bad. Sorry, Eric. We’ve been friends too long for this to be the rift between us. I did also have a legitimate question. I know there’s been a lot of talk in the last couple of months about federal grants and contracts. We’ve seen attempts to freeze all of the grants. We are hearing that contracts have gotten canceled. Can you give, for people who don’t live in this world all the time, a breakdown of what is the difference between a federal grant and a federal contract, and what does it actually take to alter them or eliminate them?
Eric Buehlmann:
You’ve raised another important issue, which is a lot of our members are still waiting for their ’25 funding, and hopefully that’s going to happen over the next couple of weeks. Even though Congress finished out what is the current fiscal year, fiscal year 2025 back in March, they haven’t released all the funding, so our members have been suffering through trying to keep doing their work and tapping their reserves and things like that. And hopefully, that funding’s going to be released in the next couple of weeks so that you know how much money you’re going to be getting. That will run through September 30th and you can continue doing the work you’re doing.
Really, the difference between grants and contracts comes down to, in my mind, whether this is something that is required. Required is a tough word because that to me usually means an entitlement, but our funding is what’s considered to be a formula grant, and you get the amount of money, you run the formulas and then people get a certain amount of money. So you’re required to send that money out under the formula, and that’s usually a grant.
If the federal government’s trying to get something like some research or I use widgets or $60 million airplanes that will drop into the Red Sea, then those are usually contracts, and so that is just something not required by the law to go do, but that they seek the services from someone else to do those kinds of activities. So our members get grants because it’s just a formula, but if you’re doing research for the federal government or, as I said, producing widgets, then you’ll get a contract from the federal government. And I think the contracts at times can be a little tougher to cancel because there’s usually terms and conditions in them, but they’re going about doing it, and you have to figure out how you’re going to enforce what the contract said at that point.
Jack Rosen:
So since you mentioned the difference between grants and contracts, we should note that they are proposing in theory a new type of grant to replace some of the funding, but there’s a reason we’re not quite happy with that solution. Can you explain a bit how these block grants they’re proposing?
Eric Buehlmann:
Well, it’s an extremely… And this is where there’s a lot of confusion. Well, there’s a lot of confusion that’s been sown by this leaked document. It’s hard to understand exactly what they’re doing and what they’re proposing, but one way of looking at what they’ve done is to cut all these programs, but then through what is a set of money that goes to the states for independent living activities, and then the state would get to divvy up this bigger pot of money amongst potentially the programs that they’ve gotten rid of, or they can just… It’s up to the state to decide. So what a block grant means at base level is we’re going to give the state this big pot of money and then leave it up to the state to decide how they’re going to spend it. And so here, what they did is they said, we’re going to get rid of all these programs, but then we’re going to through this weird little, not little, but state grant that they have, we’re going to give you a bigger amount of money under this and then let the state decide.
I think the big concern we have for our network is the rationale and why the protection and advocacy agencies were created was the states weren’t doing their job of overseeing the services and supports and the activities that were occurring in state institutions and through state funding and a variety of other things. Why would the state willingly spend money to get someone that’s going to be overseeing the work that they’re doing? That’s why Congress stepped in.
Congress stepped in because they were like, “We need some independent entity to provide this oversight over the states,” who have clearly shown that they can’t do this and won’t do this. And we know they won’t do it because it’s against their self-interest to do it, and now we’re going to give them this block grant and say, “Okay, use this money to create this entity again that would provide oversight and point out the bad things you’re doing.” States aren’t going to do that. A majority of the states aren’t going to do that. So it’s really a myth that this is the same level of funding and would be the same thing and the states could decide to do it or not. Again, Congress created the protection and advocacy system because the states failed at it, and over the 50-ish years, they haven’t shown that they’ve gotten any better.
Michelle Bishop:
Eric-
Stephanie Flynt McEben:
I know. Oh, I’m sorry, Michelle, go ahead.
Michelle Bishop:
Okay, mine’s quick. Eric, one of the I guess key phrases we hear in all of this is the idea of eliminating waste, fraud, and abuse. But from what I hear you saying, the money that goes to the P&A network is an investment in preventing things like waste, fraud, and abuse. The P&As are essentially like a watchdog to ensure that policies and money are being used appropriately.
Eric Buehlmann:
Yes, and everybody’s definition of waste, fraud and abuse depends on the way they look at it. I would argue that some people view the Medicaid program in its entirety as waste, fraud and abuse. And so when they say, “Oh, all we’re doing is cutting waste, fraud and abuse,” in their mind, the whole program is, and so therefore, they want to get rid of the whole program. I would wholeheartedly agree with your description of what our members do, which is they’re out there finding this waste, fraud and abuse, and making sure that it isn’t continuing. And so by cutting us, it seems counterproductive to their whole argument that it’s waste, fraud and abuse.
But if you define waste, fraud and abuse, in your definition, it’s holding states accountable and making sure that they’re doing what they’re supposed to be doing and making sure that the lovely states are doing their job, well, then if that’s your definition of waste, fraud and abuse, then yes, you are cutting waste, fraud and abuse. That’s me being cynical.
Michelle Bishop:
Well, these are cynical times. There’s so much going on. Every day is a different adventure. It’s hard to keep up. Thank you.
Stephanie Flynt McEben:
Every hour is a different adventure, let’s be honest, at this point. But yeah, Eric, a lot of our listeners are hearing these things, and so I just wanted to know, what can folks do on the ground level, on the state level to help with for getting these funds allocated? Could you talk about the advocacy that folks could potentially take part in to talk with their legislators? Is that something that you feel could be potentially helpful? I know obviously what we’re seeing right now is a lot coming from the executive branch, but of course, we’re going to be seeing proposals coming forth from the legislative side of things as well. So would love if you could talk a little bit about how folks could potentially get involved and try to of course work to make a difference in these efforts, if there’s anything that folks can do.
Michelle Bishop:
Eric, if I could add to that really quickly too, because I think that’s probably the most important question we can ask today. Some of our listeners are actual staff at P&As who might have a bit of a background in some of this or be talking about what they can do, but some of our listeners are like my mom, and what can she do if she wants to get involved in support?
Stephanie Flynt McEben:
Carol is fabulous, by the way. Okay.
Eric Buehlmann:
I think there’s a multi-pronged strategy here. I think one of the beauties of the protection and advocacy network and the reporting that they do is you guys have a ton of amazing stories of all the great work and activities you’ve done, but I think it’s sometimes a little bit hidden. So I think there’s a communication strategy that needs to be occurring, and making sure through social media, through the mainstream press, through those kinds of things, that these stories are getting out. And that I think in addition to the P&A network singing their own tune, I think it’s important that the great work that you’re doing and that your individuals that you’re helping, the people with disabilities that you’re helping, the families that you’re helping, that they’re willing to tell their story too and describe the importance of the work that’s being done.
So I think there’s a communications aspect to it, and then I think the second part is that these stories need to be brought either through the communication sphere, but also brought directly to the legislators and make them understand, both at your state and local level because then they can advocate at the federal level and say, “Look, this is a great entity. This is the importance of this.” And I think that that plays out a lot with the voting program, which is working with your state and local elections officials how you’ve made the voting system more accessible, made it better, done trainings, those kinds of things. Those are things that they can sell to the federal level. But I also think we need to be reaching out to our federal legislators and saying, “Here’s the importance of the network. This is what they’re doing and this is why they need to continue to be funded,” and that their funding needs to be increased.
So I think you need to have a communication strategy and making sure that there is a groundswell of support, because you will be surprised how often legislators actually pay attention to what their local news is saying. And so having news stories, letters to the editors, those kinds of things are important, or social media.
And then filling out, I think the last thing I’d say is we’re trying to do a ton of action alerts through here at the National Disability Rights Network. I know some individual protection and advocacy agencies are doing the same, is filling those out. Let me say it this way also, not using your staff email, using your private emails, but also sharing those far and wide. And then joining together with the other entities both in the aging and the disability world that are being attacked by this administration in terms of budget cuts, and saying how we really need to be working together and it’s important that we have a strong system of aging and disability systems, and just making that case to the federal legislators.
Michelle Bishop:
What I hear you saying is that Jack should be making TikToks.
Stephanie Flynt McEben:
Is that really all you got from this? Eric is giving this explanation of making sure that we’re looking at multiple media sources, and Michelle’s like, “TikTok, TikTok. TikTok on the TikToks.” Oh my gosh, that’s too funny.
Michelle Bishop:
Just trying to take an opportunity to bait Jack into an argument about TikTok, but he didn’t take the bait.
Eric Buehlmann:
Well, I know Stephanie makes TikToks.
Stephanie Flynt McEben:
I do, yeah.
Michelle Bishop:
Stephanie is a TikToker. She is an influencer. Yes, yes.
Stephanie Flynt McEben:
I pretend.
Eric Buehlmann:
Is Stephanie truly the influencer or is Nala the influencer?
Stephanie Flynt McEben:
Nala is definitely the influencer. They want to see cute videos of Nala swimming around. They do not care about the stories I have to tell about the fact that I had a legally blind Uber driver the other day. That’s another story for another episode.
Eric Buehlmann:
Or for our two o’clock discussion.
Stephanie Flynt McEben:
I’ll be sure to tell you a two.
Eric Buehlmann:
But the problem at times that I think the network has is that they don’t always… It’s the small wins that really make the biggest difference, and those can be the hardest things to get people’s attention and/or the press. And that’s where I think thinking outside the box on a communication strategy is important, because those are the stories that I think are pretty amazing. And I think they get lost sometimes because there’s just no outlet to convey all these amazing things that you’re doing on every single day.
The big abuse reports that are being done, the monitoring that’s being done, those reports that come from that, they’re huge and those are the things that’ll get the TV and the mainstream press ideas. But it’s those daily activities you’re doing, be it the IEP meeting, be it helping the person navigate to get registered, those kinds of smaller things that end up in the program performance reports but the general public doesn’t know about. And I think that’s really where there’s a gap in the work and in the communications that is done and really much more needs to be conveying those, and that’s where I think getting the client buying in and being able to talk about these kinds of things is really important. Or provide just a quote that the P&A can use in a press… Not so much a press release, but in a one-page document showing the importance of what this work is or in the communications with their legislators.
I was The Hill with one of our executive directors a couple of weeks ago, it’s only been a couple of weeks, yeah, and she had a great quote from a client assistance program client, and I thought it was wonderful and I think it’s a good way. It wasn’t the biggest, most intensive thing that you had to do in terms of the work, but the client was very happy and very excited about the outcome, and so gave a great quote. And I think those are the kinds of small wins that we need to be putting out there more into the communication sphere, because you start to add up all these small wins and people begin to hear about it more and they begin to understand that there’s more than just the giant class action litigation or the giant abuse and neglect report from the institution. So I think getting that kind of information out to the world is critically important.
Michelle Bishop:
Eric, you talked a lot about P&As and the work that they do flying under the radar, which I think is so true. And I think sometimes when people hear about cuts to government spending, it sounds like a good thing. Oh, we’re saving money. Everyone would love to cut their budget down. And it strikes me in the case of the P&A’s that when you hear those cuts, what people don’t understand is that P&A’s every day are helping protect people with disabilities from physical abuse, sexual abuse, financial abuse, all types of atrocities, and that if that’s not there, there will be dire consequences for real everyday people with disabilities.
Eric Buehlmann:
And I think we have a base misunderstanding of what the government does at so many different levels. And you’re right, I think this is a meat ax on a lot of these things, is we’ll do these giant cuts and we’re doing a great job, but in the long run, what you’ve ended up doing is creating a system that is probably going to cost you more in the long run, and at the same time, leaving behind a trail of abused, neglected, financially exploited people with disabilities.
And again, going back to positive changes for people with disabilities are not just for people with disabilities. It ends up being something that impacts the entire society. The example we all use is curb cuts, and curb cuts are critically important for people in wheelchairs to be able to navigate around. Well, talk to your family with a stroller or talk to the person with big heavy luggage rolling things around, trying to lift it up onto a curb. No, thank you. I’d rather just roll it onto the curb. Same thing with level boarding into trains or trains that are more accessible. You’re making it easier for just a broader population than people with disabilities. And so ultimately, these kinds of massive cuts are just going to harm society more than they’re going to be beneficial at all.
Michelle Bishop:
I think that’s so true that it costs more in the end, because we know it’s much more expensive when people end up in any type of institutional setting. Whether or not that’s a nursing home, a residential facility, a jail, or a prison, that’s much more expensive than supporting people in the community. So we can invest a little bit of money into people with disabilities being able to have independent lives in the community, save in much more expensive ways of supporting people with disabilities, and as a bonus, the people with disabilities that are living in the community, they’re working. They’re paying rent or a mortgage, they’re paying taxes, they are spending dollars at small businesses, they’re actually boosting the economy at the same time. To me, it’s like this win-win where we spend less upfront and we make more money on the back end.
Eric Buehlmann:
I completely agree. That’s the best way to make… But in addition, you also get the connection still between the people and their families and the people and their community, which you can’t quantify. And unfortunately, many legislators want to be able to quantify everything and say if we’re spending this dollar, what are we getting back in return? And that’s one of the difficult things about the work our members do at times, is that there really isn’t a dollar amount to the quantification of being able to maintain the family unit and being able to maintain as part of yourself as a community, and those are critically important. And that’s where sometimes you get some pushback from some people, and you need to have someone understand the importance of the family unit still being together or the individual being part of the greater community and what that means to everybody. But you’re right on the monetary side.
Michelle Bishop:
Absolutely. Things that are easier to take for granted when they haven’t been challenged in your own life the way they are for people with disabilities. I think sometimes we overlook the benefit to the individuals, to the families, to the communities if you haven’t had that lived experience of a family being separated, of being a person with a disability who hasn’t been given the dignity of independent community living and work when that’s something that you’re perfectly capable of.
Eric Buehlmann:
And that’s also becoming… I think we have grown up in a society, even me, the oldest of the group here has grown up in a society where people with disabilities have been more included than they were in prior generations, and I think there’s a large segment of the world that has forgotten what it was like before. You go back to before the Rehab Act or you go back before what was first called the Education of the Handicapped Act, which is now Individuals with Disabilities Education Act, and definitely the Americans With Disabilities Act. But we have a whole generation of people that don’t remember what society was like at that time and the problems and the issues that arose, and so I think they have forgotten that this is an issue that still needs to be addressed. They assume that we have achieved, I guess I’ll say Nirvana in this topic, and there’s just so much work to do still, but if we stop doing the work, we’re going to backslide into what we were before these laws passed.
And that’s a situation we can’t go back into, and we need to explain to them that this is where we were. We know you didn’t know it, but this is where we were, and if we don’t have these entities out there, this is what we’re going to go back to. So you’ve got to explain and you’ve got to show those, as much as there’s a lot of language that needs to be changed, the Geraldo Rivera exposés of Willowbrook and otherwise show what the world was like and what we could potentially go back to, and that’s what we don’t need to be going back to.
And so you look at the really bad examples that came out from the creation of the PAMI program and why Congress decided that there needed to be a program focused specifically on mental illness was those abuse and neglect investigations into psychiatric facilities. And if we don’t have the P&A network out there, this is where we’re going to end up back in that world. But a lot of people have never seen that world so they don’t understand it, and we really need to hit them in the face with it.
Jack Rosen:
I think that is an important point, Eric. There’s a reason you’re calling PAD and PAMI the mothership programs, because at the end of the day, what the network was started to do was protect the members of our community who are most at risk, and that is the people who are in institutional settings, where their family maybe is checking in on them but they’re not there all the time. They have, in some cases, limited ability to communicate with the outside world. And I think you’re hitting on something important, that people, when we talk about the bad old days, it’s not, oh, the facilities were a little worse and they weren’t where they are now, or it’s not the network coming in to tell you, “Oh, we disagree with placing your family member in this facility. We think they need to be at this one that’s just a little better and it’s more expensive, and that’s what we feel.”
We’re not here to meddle in people’s lives or we are not doing this frankly for fun. When we talk about the bad old days, people need to watch Willowbrook, because the footage you’re seeing, it is disturbing. It looks like, I hope I can say this on the podcast, as someone who’s Jewish, it reminds me of footage from some very ugly times in our past. These people were malnourished, they were missing teeth. They were sitting in their own waste in these facilities, not getting better but getting worse because they were being abused, they were being neglected, they were not being fed. Sometimes they were being physically hurt by the staff. And I think folks need to realize, when we talk about the bad old days, it is not like, “Oh, it used to be different.” It is something we cannot accept going back to, and that is why we need folks from across the network and all of you listening at home, we need you to explain to your members of Congress why it’s important to you that these programs are protected.
Eric Buehlmann:
And we still see these examples occurring today. There have been multiple stories, some very recent and some over the last couple of years, of little fight clubs at institutions where the staff will put people with disabilities against each other and place bets and do those kinds of things. So it’s not that these events are still not occurring. It’s not in the same sphere as the Willowbrook, because what they’ll now do is they’ll take you around a nice shiny looking facility and institution and say, “Hey, look, it looks a lot better compared to what Willowbrook is.” Yeah, it does. It looks shinier, but the same problem still exist and the underlying problems.
And the community is not always perfect, but what that means is rather than going to see, let’s say in the case of Willowbrook, 6,000 people in one place, if you’ve got group homes of, I can’t do that math so I’ll do it at 10, group homes of 10 people, that’s 600 places you need to go. Well, 600 is a heck of a lot harder to get to than one, so you’ve got to make sure that you’ve got the resources and the ability to get to all these places and be able to get around, but the events are still occurring. There are plenty of examples out there. They may look shiny and new but the underlying problems still exist, and so the network is desperately needed to make sure that those events don’t occur and that, as you said, Jack, we don’t go back.
Jack Rosen:
In some ways, it sounds like what we need is more funding, not less, because we need people out there investigating these thousands of facilities. The network is doing everything they can right now, but it’s up to Congress to fully fund our investigative capacities so that we can prevent it at all of these facilities.
Eric Buehlmann:
From your mouth to God’s ear, or the appropriators ear in this case.
Stephanie Flynt McEben:
Absolutely. Well, thank you so, so much, Eric, for being on this episode and giving us more of a view in lay terms of everything that’s going on. And yeah, we will definitely include links for folks in the show notes of various things that we’ve discussed today. And yeah, thank you again so, so much. We really appreciate it, and we’re glad to have you on as a first time guest.
Eric Buehlmann:
Well, thank you. I appreciate it. And let me with just a thank you to all the Protection and Advocacy and Client Assistance Program staff that are out there. I’ve been with NDRN for a little over 18 years, and part of the reason I came and part of the reason I’ve stayed is the work everyone’s doing day to day on the ground level, making the lives of people with disabilities better. I think you can sell yourself a little short on the amount of work you’re doing and the amount of good you’re doing, but I think it’s important that someone’s out there doing this work and that we’re here trying to protect you as best we can.
Michelle Bishop:
And we want to thank you, Eric, for all the work that you have done every day for years now to help protect the P&A programs and people with disabilities. It doesn’t go unnoticed. Willowbrook came up a couple of times, so I wanted to mention, as Stephanie said, we can include some links in the show notes. The Geraldo exposé of Willowbrook is available to watch online for free. For folks who have not seen it, it is as bad as it sounds. It was notably actually Ryan Murphy’s inspiration for writing the asylum season of American Horror Story, which is actually the scariest season of a show called American Horror Story and it’s not even the season that has clowns in it. That’s how bad Willowbrook is. I wanted to add one last thought to all this, because we talked a lot about the consequences of cutting programs like PAT and PAMI, and it’s not lost on me that when there are proposed cuts to the mothership programs, there’s a proposed elimination of the PAVA program. It would prevent people with disabilities from voting to protect the programs that protect their rights.
Eric Buehlmann:
Thanks guys. I appreciated the opportunity.
Stephanie Flynt McEben:
Eric, that was-
Michelle Bishop:
Thank you.
Stephanie Flynt McEben:
Yeah, that was amazing. Thank you.
Jack Rosen:
So Stephanie, I guess I’ll ask, since Michelle isn’t here, and I’ll try to do the best and be a tough critic like Michelle can be. Do you have a joke for us?
Stephanie Flynt McEben:
That’s kind of hard because I know that you really like my jokes, so anyway. Not to get too terribly off the rails on this… I know, I know. I do a lot of train puns, what have you, on the struggle train. Anyway, not to get too off the rails, but I wanted to let folks know that we are, in case you don’t know, having our annual conference taking place the first week of June. Super exciting. And why do I say that? Because we’re going to have lots of premier trainings for folks to attend. Workshops, sessions, there’s one on public policy and social media hosted by yours truly, and our pro-host will also be presenting, so couldn’t help but give that a shout out. But yeah, if you are interested in coming to our annual conference, it is going to be held virtual. We’ll put the registration link in the show notes for those who may not be registered yet. So yeah, that was my lame attempt at a joke this month, and I promise they’ll get better soon.
Jack Rosen:
The jokes will get back on track.
Stephanie Flynt McEben:
Yes, right. Exactly. See, Jack’s getting it. Jack has the joke this time. I love it. All aboard. Man, we conducted that really well. Anyway.
Jack Rosen:
All right, I’m ending this podcast. You can follow us on Facebook, Twitter, Instagram, Bluesky, Threads, LinkedIn. If you can find our TikTok account, you can follow us there.
Stephanie Flynt McEben:
Also, tell us what the handle is because I think we forgot.
Jack Rosen:
Let us know, and you can let us know at podcast@NDRN.org. Until next time, folks.
Stephanie Flynt McEben:
Bye. Choo-choo.
This episode we had on Taylor Easley for Social Work Month. Taylor talks about her experiences earning a social work degree and how social work overlaps with the disability rights movement.
Link to full transcript: https://www.ndrn.org/resource/ndr-mar25
Michelle Bishop:
I’m not usually the recorder, so God knows. We’ll just start having a conversation and nothing will be recording. Jack, do not put this in the episode. That’s going to be in the episode. All right. Stephanie, do you want to get us started?
Stephanie Flynt McEben:
Sorry. Apparently Quinn found a cat on the side of the road that looks lonely and now they want to bring it home. Pray for me.
Michelle Bishop:
That’s your cat now, just so you know.
Stephanie Flynt McEben:
No.
Michelle Bishop:
This is how you get a cat. Nobody goes and buys a cat. A cat finds you. That’s how it works.
Stephanie Flynt McEben:
I know, and Quinn called me and is like, “I need to get it.” My wife, by the way, just for some context, Taylor. I’m like, “No, no, no. I mean, I guess if the cat looks lonely, you can bring the cat, but I don’t know.” I’m like, “Okay.”
Michelle Bishop:
Oh my gosh. Congratulations on your new cat, Stephanie.
Stephanie Flynt McEben:
I’m not ready for this.
Michelle Bishop:
So excited for your growing family.
Stephanie Flynt McEben:
Nope, nope, nope. Okay, perfect, perfect. Catastrophic.
Stephanie Flynt McEben:
Oh yeah, Stephanie likes puns.
Michelle Bishop:
Taylor, if you’re not ready for the bad puns, Stephanie is the queen of bad puns. That’s the other thing you have to know.
Taylor Easley:
I’m ready for them.
Stephanie Flynt McEben:
They are puntastic. Wait, are we recording or no?
Michelle Bishop:
Oh, we’re totally recording.
Stephanie Flynt McEben:
Oh, schnitzel face. Well, Jack, you’ve got your cold open, don’t you?
Stephanie Flynt McEben:
Alrighty. Well, Taylor, thank you so, so, so much for being on today’s podcast. Before we get into your experience at the P&A, would love to just hear a little bit more about your background and how you got into this work and what brought forth your passion to this work.
Taylor Easley:
Yes. First, thank you so much for this opportunity for me to be on the podcast and hear my story. I’m very grateful and humbled.
Taylor Easley:
My name is Taylor Easley. I have a masters in social work from Virginia Commonwealth University. How I got into this work is that, well, one, I always loved helping people. I used to volunteer at a nursing home when I was in high school, so me helping people isn’t new to me, and when I got into school, I fell in love with social work and I ended up doing multiple internships between undergrad and grad school before working at the P&A of working in the disability community. Some were working in the group home, some were working in a group setting and some have even have been working in policy.
Taylor Easley:
In my senior year of MSW program, I ended up working at the P&A system and working at Disability Law Center of Virginia and that’s where I really fell in love with disability and disability rights and that’s one of the biggest steps of why I am here today.
Stephanie Flynt McEben:
That’s amazing. Thank you so, so much for sharing that. And it’s so interesting how so many of us, it’s been a very common theme from this podcast in terms of talking about how individuals with disabilities and without disabilities have just stumbled into this field in a lot of ways by happenstance. So no, thank you so much for sharing.
Stephanie Flynt McEben:
I know you pointed out your experience at the P&A as an intern. Would love to hear a little bit more experience about that and how that’s propelled you forward in your current career aspirations.
Taylor Easley:
I started as an MSW intern there at the P&A system, Disability Law Center of Virginia. It was a great experience. I learned a lot. I actually improved in my writing there. I learned what it really meant to really advocate for people with disabilities on a macro level. In social work we have the macro, mezzo, micro, well, I’m saying it wrong. We have three different levels in social work. One is working with clients one-on-one, the other one is working in groups in the community, and the last one, the biggest level, macro, is working in the community at large, but systemic policy level. And that’s what I got to do a lot at the Disability Law Center of Virginia.
Taylor Easley:
I would write articles. Actually, one of my first articles I wrote was about cerebral palsy. I have cerebral palsy myself, so that was definitely a way to honor people with cerebral palsy, but let them also know about the P&A system in a way.
Taylor Easley:
I was able to go on monitoring visits and actually be in the community and see how people with disabilities need help. I was on phone calls, I was in different types of meetings that they had and that was all as an intern. I later applied for the public health fellowship at the Disability Law Center and working there. And there I worked there for two years. There is where I really, really grew in working in the field, doing more work, taking more on tasks, reviewing report, leading meeting, and really understand what the disability community needs and understanding that it’s not just about getting the information to the P&A, but how do we get it out to the disability community. That’s one of the things that I did there at the Disability Law Center of Virginia, is that I found a way to take the information that was coming into the dLCV and make sure that the disability community and staff, that they had it.
Michelle Bishop:
Taylor, I’m vibing on all of this because, I don’t know if you realize this, you know we’re both social workers, but we’re also both Virginians. So I’m very excited about all of this. Thank you for representing for our people.
Michelle Bishop:
I wanted to ask you, I always wanted know, I always wanted to do the work that I’m doing now. I knew that from a young age, but when I thought about where that would take me, does that mean being a political science major? Where does this go? I chose social work because I really liked that social work as a profession is very centered on the person and how programs and structures are going to impact the person, and that to me was really meaningful. I’m wondering from you as a social worker and a person with experience with the P&As and the disability rights movement and as a person with lived experience of disability, do you see overlap between those ethics and values that are adopted by social workers and some of the tenants of the disability right movement?
Taylor Easley:
Definitely yes. I do see a overlap between the ethics and values between social work and the disability rights movement. And I also see it not just in social work as a whole, however, I’m also part of the National Association of Black Social Workers, so I do see the overlap there.
Taylor Easley:
Let’s start with social work. A lot of what social work is, person centered, they want to make sure that the client is getting what they need. We want to make sure that clients understand their rights, that they are not abused. That definitely go along with the disability rights movement. And that’s why I am not really surprised that there are a lot of social workers who work at the P&A system, at least at the Disability Law Center of Virginia. I am not very surprised because there is a lot of overlap except the biggest thing in the disability rights movement is that the client is a person with a disability, and that’s where we lean onto a lot wholly.
Taylor Easley:
For the Association of Black Social Workers, our values and ethics, they overlap a lot too, however, the focus is about people who are black. For me, I just don’t fit in with the disability rights movement, I also fit in with the Association of Black Social Workers because I am disabled and because I’m black. The only difference between the biggest two is that it’s the focus of the group. But with the National Association of Black Social Workers, we do want to hear the whisperings. We do want to know how do we help people. So we need disabilities, people with disabilities, excuse me. Sorry starting over.
Taylor Easley:
We need people with disabilities, lived experience, who are black in the Association of Black Social Workers. That organization is very Afrocentric, so the focus is around black people, but again, we are about community. We are about togetherness. We are about uplifting people. We are about social justice, social action, everything that the disability rights movement is. And I’m pretty sure there is a lot more. But those are just some of the big key things that I see between social workers, the National Association of Black Social Workers and the disability rights movement have in common. And the biggest thing is that are for the people, we are for the community and we want to help better serve the community that we are a part of.
Michelle Bishop:
I think we have to acknowledge too if we’re going to talk about social work and disability, that there is some prejudice out there about social workers, who we are and what it is that we do. Even if you don’t have any experience with a social worker, I think a lot of folks concept of what that means comes from primetime television. Every hospital drama, every police drama has a social worker who shows up and they’re going to do something drastic like take your children away, but they’re wrong about what’s going on and the doctor or the police officer has to stop them. These incompetent social workers. And that’s a lot of the images of us that are out there. But also, having been in the disability rights movement for so long, I also know some incredible disabled advocates who’ve also realistically had some bad experiences in the past with social workers that maybe weren’t doing the work from a more holistic, disability forward perspective. So I respect that as well.
Michelle Bishop:
I do think that today’s social workers are really focused on doing person centered work and they’re about social justice and civil rights and engagement, and I think they’re changing the game. Have you experienced any of that in your interactions with the disability rights movement and your work with the P&A? What was that like? How did you handle some of that?
Taylor Easley:
Unfortunately, I don’t think I actually experienced that a lot, especially because the one thing that a lot of people who are in the social work field who don’t really understand if you’re not in the field is that just because you have a degree in social work doesn’t mean that you are actually a social worker. So a lot of times when I am in meetings with other people in the disability rights movement, whether it be agencies or people with disabilities, they may know I have a degree in social work, but I’m not a social worker in that capacity. So for me, because I’m not seen that way, I don’t think I have experienced that, but I definitely have gotten, before I wanted to be a social worker, oh, you want to take kids away or you want to do this or you want to do that? And it’s like, no, there’s so many realms of social work and social workers are everywhere.
Taylor Easley:
This is what I like to say about social work. I know this isn’t part of the question, so you can edit it if you need to, but one of the biggest things that I like to encourage people about social work is that social work is really, how can I put it? It sometimes it’s your education, not always the [inaudible 00:13:27] title. There are many people who have their degree in social work, but they are advocates, they are counselors, they work in the jail, they work with the police officer. So we’re not just in the hospital, at police, we’re anywhere and everywhere. And that’s why I just see me as a social worker where I use my social work education to help whatever job that I am in.
Taylor Easley:
For the past couple years I worked in the disability community, at group homes, small groups and then at the P&A system. And so I use my social work education for that. I do not know where I’m going next, but even if it’s not the disability rights movement or working in disability or working with the Association of Black Social Workers or anywhere I work, I see myself as using my education to help me to do the job. I’m not sure if I really answered that question, but I hope I did?
Michelle Bishop:
Actually, you got me thinking, and I’m so sorry Stephanie, I know you were about to ask a question, but you really got my gears turning and I can’t resist throwing that in there that, I actually think some of what we do in social work actually is really beneficial. You mentioned earlier that there’s not necessarily a ton of social workers in the P&A network, and that’s true from my experience as well. It’s really interesting to me because some of the things that we’re taught in social work school I think would actually really benefit a lot of attorneys and other folks that work in the P&A network. Things like self-care and avoiding burnout, vicarious trauma, when you’re working with people who are experiencing things that we work in like abuse and neglect, going into institutional settings and things like that. Recognizing and acknowledging yourself and your identity and what kind of meaning that has when you go into someone else’s community as a professional and showing up appropriately in different places where people with disabilities live.
Michelle Bishop:
I don’t know of any other profession that includes that in the professional training that you get before you go out into the world that I think is actually really important and could benefit a lot of folks in the P&A network. We might have to pick that up. That sounds like some future podcast episodes and trainings. I’m so sorry, Stephanie, take it away.
Stephanie Flynt McEben:
No, I think that that’s a perfect segue into the next question that I had, so thank you so much for bringing that into the conversation, Michelle. And I think that that’s one thing that people forget or maybe don’t always think about, is the fact that there are so many transferable skills when it comes to the work that we do. Based on what I know about social work, I’m not speaking for the social worker community, but based on what I know and based on our conversation today, there are so many beneficial skills.
Stephanie Flynt McEben:
To that end, I would love to know, Taylor, what advice you have for individuals who are actively pursuing social work degrees or even individuals just starting out after getting their degrees in social work. What are some ways for them to get involved in advocacy within the P&A network or even just disability rights advocacy? I know that we touched on this a little bit, but would love to dig a little bit more into that if you could share.
Taylor Easley:
I will be honest, the way I got into it was by accident. I just filled out… I got picked at a disability agency to do one of my internships, so that’s how I got into it. But I would say if you know, then one of the things that I would definitely do is definitely, if you are in school, definitely try and take electives around disability, because that may also help you to really get an understanding of what it is. Because a lot of people don’t realize, it’s so much.
Taylor Easley:
Even when I got to the P&A and they was like, it’s a lot of stuff. And I’m like, wait a minute, I can’t do everything in the disability rights movement. I was like, oh, snap. I didn’t realize it was so much. So I would just say, learn what you can. Also volunteering with the P&A network, if you cannot get an internship, if the P&A system is in your state, that is close to your school of social work, see if you can get an internship there because that is definitely one way. But I definitely know, at least in Virginia, they need volunteers, so one thing is also volunteering, but also learning. Also calling the P&A system and maybe seeing, I don’t know if they can do this, but maybe even seeing if they can do an informational interview or just finding different disability rights movement things to do, or even agencies where you can help, you can volunteer, you can work.
Taylor Easley:
Because the one thing about social work is that yes, you can have the education, but when you are after you graduate, a lot of it is about experience. And I think that if you can get the experience while you are in school, that would be great because it’s going to be easier if you want to move and see if that’s definitely the field that you want to do, it’s going to be easier to probably move along. Because you know the language, you know the terms, you know what words to use and not use. You know different things that people in the disability community are looking for. You have that professional work experience behind you to back it up.
Taylor Easley:
The other thing for social workers coming out of school, I would definitely say volunteering, networking. Because the thing about it is that nine times out of 10 as a social worker or if you work in the social work field, you’re going to come across a person with a disability. People may not think it, but you don’t really have to work as a disability agency or work with P&As to actually work with people with disabilities. We get around, we go to different agencies to seek help, whatever it may be. But just getting in that field is a great way. Getting connected with the P&A, getting connected with any agency that does a lot of work around disability in your agency. And I mean, sorry, starting over.
Taylor Easley:
Getting connected with disability agencies in your state or even just learning about the topic. Sometimes watching movies like Crip Camp, that could give you a lot of history about the disability rights movement and where it came from. There is so much rich history about the disability rights movement that even as I was working as a P&A that I had to learn. And I have been in the field of working with people with disabilities since 2018 and I were born with CP and there’s so much stuff that I don’t want to learn that I have to learn that I’m still learning.
Taylor Easley:
So definitely learning and open to learning, open to growing and just open to wherever the path may take you. Because you may be working or volunteering at the P&A system, but realizing working there may not be the best thing, but you may be like, you know what? I have the knowledge of the P&A system. Let me go over here and be a light to an agency that works with people with disabilities that need it the most.
Michelle Bishop:
Well, everybody should watch Crip Camp, actually. It Was fantastic. Everyone who hasn’t seen it should go and watch Crip Camp right now. And I was also, as I was listening, thinking for P&As that listen to this podcast, first, thanks y’all for being our loyal followers. But for P&As that listen to this podcast, reach out to the social work schools in your state. If you are one of those P&As that is looking to hire new young professionals at your P&As, if you are saying to us all the time, “We need interns. We need volunteers.” There are students who I’m sure would love to get involved with your organizations. This is a bit of an untapped resource, I think, for our network. So get out there and make friends with a social worker this month for social work month.
Taylor Easley:
Yes, please. I would definitely say me working at the P&A system as an intern really helped me in what I wanted to do with my career and it really showed me what I would like to do. Yes, P&As, if you can reach out to the social work schools in your state and let them know like, Hey, we wouldn’t mind taking on a social work intern, that would definitely be great. Or even if you can’t, be like, hey, do you have any students in the social work field who wouldn’t mind volunteering? Because that’s another way. It doesn’t always have to be internship experience if you can’t get it. It could be something like, hey, we are looking for volunteers. We need this, we need that.
Taylor Easley:
So yes, reaching out to the social work schools and not just the social work schools, but other agencies that you think that could have social work and just getting that intel or networking. Because we’re all in this together with the disability rights movement, but we can’t be separate, we have to be together, and we need more social workers with that background of social work in the movement too, to help.
Michelle Bishop:
Taylor, thank you so much for joining us for this episode for Social Work Month to talk about disability rights and the P&A network and the amazing things that social workers do. Somehow against all odds, Jack is producing this episode from a moving vehicle. Stephanie’s wife is adopting a cat as we speak, so we appreciate you making the time.
Taylor Easley:
Yes, thank you so much for letting me come and just talk about my experience. I’m so grateful. It was fun, and I hope to be back one day.
Stephanie Flynt McEben:
Absolutely. Thank you so, so, so much. And for our listeners, please pray for me. I’m not ready for this cat thing. I’ll take any advice you have at Podcast@ndrn.org.
Michelle Bishop:
Specifically, she’s looking for brands of kitty litter that you’d recommend, cat foods, toys, maybe laser pointers. Go Cat Mama.
Stephanie Flynt McEben:
I know nothing about this. The last time I lived with a cat, I was terrified because the poor cat kept getting in my meal prep space and I’m like, oh my gosh, I’m scared. I don’t want to hurt you kitty cat. I genuinely don’t want to hurt you. Stop walking on our stove. So anyway, pray for me. Thank you.
Michelle Bishop:
Taylor, thank you. And we’ll send you pics of Stephanie’s new cat.
Jack Rosen:
Wow, that was a great interview with Taylor. I really enjoyed that.
Stephanie Flynt McEben:
Yeah, no, I think that there was a lot of really good insight there and I’m really, really glad that she was able to share that with our community, about her experiences, her lived experiences as a disabled social worker. That was super cool.
Jack Rosen:
Well, our other favorite social worker, Michelle Bishop, had to head out, but I know if she was here, she’d want to hear this. Stephanie, do you have a joke for us this month?
Stephanie Flynt McEben:
Oh, of course. And you know Michelle always wants to hear my jokes. You heard it here first, y’all. Anyway. This is more of a story. Again, I know Michelle’s favorite and I just want to give a shout out to Susan from Facebook Marketplace. Susan, you are the real MVP, so thank you for this.
Stephanie Flynt McEben:
So anyway, I was looking at Facebook marketplace, as one does, and just randomly I came across a piano that was for sale and then marked down for free. I clicked on it because I’m a piano enthusiast. I started playing piano when I was four and I thought I was a cool cat and no, I wasn’t going to get the piano, but I couldn’t help but click on the ad. And so I did. She was talking about all of the features and how nice it was, and then she said something along the lines of, which we hear this a lot on Marketplace, only seriously inquiries, no players. Why would she say no players is what I want to know? Because isn’t the whole point to play the piano. I guess she needs to learn the necessary keys for Marketplace advertising. Thank you, Susan. Appreciate you. Did I make sense?
Jack Rosen:
Such a long walk to get to that punch line?
Stephanie Flynt McEben:
I know, but it was so perfect. Come on, that wasn’t the worst I’ve ever done.
Jack Rosen:
It’s not the worst.
Stephanie Flynt McEben:
I thought it was funny. When I saw it, I laughed at it for 20 minutes.
Jack Rosen:
So did you get the keyboard?
Stephanie Flynt McEben:
No, I did not. I didn’t. But no players just kills me.
Jack Rosen:
You were going to be able to make a jingle.
Stephanie Flynt McEben:
I know, I know. I’ll work on it. Maybe Susan will still have that piano up and I can say, “I am a player, but I’m still interested in keyboard.” Anyway Jack, do you want to tell the people where they can follow us on social before they decide to tune out because of my bad jokes?
Jack Rosen:
Yes. You can follow us on Facebook, LinkedIn, Threads, Instagram, Bluesky, YouTube, probably somewhere else. Did I say Twitter? You can follow us on Twitter.
Stephanie Flynt McEben:
You should say TikTok, the account we never use.
Jack Rosen:
I do not remember what our TikTok is.
Stephanie Flynt McEben:
I’m going to do some investigative research and look up our TikTok account. Thank y’all. Bye.
Friend of the pod and NDRN colleague Monica Wiley joins us to talk about the role models that inspired her own activism.
Full Transcript Available at: https://www.ndrn.org/resource/ndr-feb25/
Stephanie Flynt McEben:
All righty, folks, so we have the pleasure and privilege to sit down with one of our lovely colleagues, Monica Wiley who is going to, talk about Fannie Lou Hamer and the contributions and how she paved the way, for individuals when it came to various advocacy within the disability rights movement. And just, just various things along that nature. Monica, we are so excited to have you.
Monica Wiley:
Thank you so much Stephanie, for that warm introduction. I am delighted to be here and to talk about Fannie Lou Hamer and all of the great advocacy work that she has done, and pave the way for someone like myself to continue in that advocacy and that activism world. So I’m delighted to to be here and speak about her and, another individual as well that we all have, grown to love and definitely appreciate that, unfortunately, is no longer with us, but his legacy has left a, a blueprint, a print, in the advocacy world to make sure that we continue to to advocate as much as possible.
Stephanie Flynt McEben:
So people with disabilities. Absolutely. And just so just some quick background, because I know that, you know, some folks know about Fannie Lou Hamer is contributions, but but would love to, you know, if you could give some background on the contributions that that Fannie Lou Hamer, Hamer has made, to the disability rights movement, but also to what contributions particularly stuck out to you personally?
Monica Wiley:
Thank you so much, Stephanie, for the question. I love this question and happy to share about Fannie Lou Hamer. So let me answer the first part, of the question. Fannie Lou Hamer was a, a woman, a pioneer in the advocacy movement, that during the 1960s. And what I liked about Fannie Lou Hamer was that while she was a fierce advocate for justice rights, disability rights, she was a person who had a disability, who was born with polio, had polio at the age of two or maybe three. I think it was around 2 or 3 years old, and she walked with a visible limp. But what was amazing to me was that while she was building and coalition building and having others born into the advocacy movement, to to fight for advocacy and disability rights, they looked beyond her disability. And that was what was so impressive to me. And that is what I liked about her as well, is that while she had this disability and she walked, uneven because she walk with a limp because of the polio, she did not let that stop her. And I feel that that is the fuel that we have today, in terms of the advocacy world, is that we don’t let that stop us. And I believe that’s what made her so impressive, even during the 1960s, when she gave such an impassioned speech, about advocacy and about rights and that is what that’s so impressive. And I think that is what the disability community even finds impressive about her today, because we tend to love to adopt her slogan, which is what makes us so, so incredible as a community that we’re sick and tired of being sick and tired and and that slogan can be used for so many different and so many ways, for so many different reasons. But then the disability community and then the advocacy community for disability rights, sick and tired of being sick and tired means that we’re sick and tired of not just being considered as as a community that is whole because we are whole human beings like everyone else. And so we are sick and tired of not being considered as whole. And that’s what Fannie Lou Hamer was about. That’s what her advocacy was about. And that is why we are connected to a man and a black woman with a disability. And I do, have a visible disability because I walk with a cane when I am not in my travel scooter. And today, yes, I still get some looks and stares.But when I open my mouth and I talk about the importance of us coming together to strengthen advocacy for disability rights, that it’s when you’re and you’re then beginning to see that they can look beyond your disability, like the way that they did during that time in the 1960s, how they look beyond Fannie Lou same or disability and saw her as a fierce, true leader and that in that field. And so that is what connects me to her in so many ways. She is one of my sheroes, and I really feel that the disability community likes about her as well, and her advocacy is the fact that she even look beyond her own disability and then allow others to see that disability prevent her from her great work in the advocacy world.
Stephanie Flynt McEben:
I absolutely agree with that 100%. And, you know, I think one thing that I personally appreciate about Fannie Lou Hamer is the fact that, you know, she wasn’t all talk. Right. And I feel like sometimes, you know, folks, while they are well-meaning, you know, sometimes people will say things and not act on them. And when she said, I’m sick and tired of being so sick and tired, she acted on that.
Monica Wiley:
She worked, to try to, you know, make this world a better place for for all of us and various communities. Absolutely, absolutely. Beautifully said, Stephanie, that she did and that that slogan made her again, the, the the desire every single day to get up and and make society and make our community just a better place overall and a better, just a better community overall and a better society overall, So the betterment of our community and society as a whole. So absolutely, I agree with you 100%,
Jack Rosen:
Thanks for sharing that, Monica. I was wondering if you could tell us who else has inspired you and your journey as an activist?
Monica Wiley:
Thank you for the question, Jack. Yes, so many have inspired me, but the the other person that comes to mind when I think of my work in the advocacy world and disability rights is the late Congressman John Lewis, and may he rest in power. Congressman John Lewis was a very to some amazing, amazing, man and leader from the South. And I always love to say, one of his, his, his mantras, one of his slogans, which is, you know, it’s nothing wrong with getting into good trouble. And that’s how I look at disability rights and and advocacy. It’s getting into good trouble. Because the trouble that we are getting into is good. It is for the betterment of our community, for the betterment of society, for our, for just the advocacy that we’re doing to be beneficial for for us and for everyone that is a part of our community connected to our community. So advocacy is good. Trouble getting into good trouble, making sure that we eliminate the bad troubles and creating some good trouble. And so that’s what I loved about Congressman John Lewis, was that he, he was proud to be a person that was about making history and history in a sense of good trouble. For those who don’t may not know about Congressman John Lewis background, Congressman John Lewis, was such a, a fierce, advocate for, for, for rights, just, just, just basic human rights. But what he, is highly revered, of is him leading about 600 people across the Edmund Pettus Bridge in Selma to fight for the rights, for for voting rights. And while it did not go the way that, that we, we had hoped for or especially at what they hoped for, that during that time, although they were fighting for good trouble. It didn’t go as well, that they had anticipated. But the beauty of the good trouble that came out of that situation, because there was still some good trouble that, that is with us today. The beauty, about that was that while they encountered some hardships, and some struggles as they cross, the Edmund Pettus Bridge in Selma, that definitely led to voting rights and and just disability rights because he experienced, disability during that time. During that period, because of what happened to him. But he didn’t let that disability stop him. He continued to fight for disability rights and for for advocacy, and ended up becoming a member of Congress, when he ran for Congress, and Georgia. So Congressman John Lewis and Anthony Lou Hamer were both pioneers and individuals and the advocacy world and the voting rights world. And also we and the disability community have adopted, that, that that slogan, that it’s it’s always good to get into some good trouble. Never be afraid, to get into some good trouble. Are the two pioneers that I championed and and the work that I do that keeps me grounded. And and positivity. In terms of me fighting for disability rights, for my rights and for the continuation and the support of advocacy for my community and for us all.
Stephanie Flynt McEben:
Okay, I love that. And can I just say that advocacy is good trouble or advocacy makes good trouble needs to be one of the t shirts that we sell in our merch shop. Know what I like that I do like that I didn’t even realize that effective. I would try to be tied to my words. I’m like, go, Monica, go like yes, oh my gosh, I’m totally here for it. Of course we should totally, you know, attribute like, you know, the paraphrase to you as well. Like I am totally here for this. I like that
Monica Wiley:
Jack did that answer your question?
Jack Rosen:
It did. Thanks for coming on today, Monica, do you have any closing thoughts?
Monica Wiley:
I was going to say no, but yes, I do. I just first, I want to thank you, to, this this podcast to my colleagues for having me come on here to talk about two amazing leaders, that, that we’re paying respects to for their contributions to the advocacy world. And may we just continue to stand on their shoulders and continue to be their, their biggest accomplishments, because this is what they wanted to see. And I hope that we just continue to think of them as we continue to run across some obstacles and some hurdles and some mountains at times. But think about those mountains and hurdles that they came across. But they still continued. They still continue to to fight for disability rights and and for advocacy. And so I lead with saying that may we continue to do the same and maybe continue to make them proud and continue the work that they left for us to do, because it is up to us to continue this mission and this work. And so I thank you. And it’s a pleasure, as always, to be, with my colleagues, Jack and Stephanie here on this podcast. Have a great day.
Stephanie Flynt McEben:
Thank you so, so much, Monica. We totally, as always, enjoy having you, as one of our guests on the podcast. And of course, you know, you are always welcome back, I appreciate that.
Monica Wiley:
I look forward to coming back.
Stephanie Flynt:
Yaaaay I love this. We have a commitment.
Jack Rosen:
And as always, you can follow us on threads, Twitter, blue Sky, LinkedIn, Facebook, Instagram, and the TikTok that we do not use that I do not remember the account name of you, and you can email us at podcast@ndrn.org. Until next time, folks.
Friend of the pod and NDRN alumni Ian Watlington get’s back on his advocacy horse to talk to us about the impact sudden weather events like the recent DC blizzard can have on folks with disabilities.
Full Transcript available at: https://www.ndrn.org/resource/ndr-jan25/
Jack Rosen:
Yeah, I guess we’re just doing this. We don’t know where Michelle is. She has abandoned us.
Stephanie Flynt McEben:
That’s fine. I feel very abandoned right now.
Jack Rosen:
If she’s too cool for us, if this is like John Lennon leaving the Beatles, she’s going to do a new experimental podcast.
Stephanie Flynt McEben:
Oh, I have a song for that. This is the potential breakup song. I don’t think Allie and AJ are going to sue us.
Jack Rosen:
She’s not even here to stop us from getting sued.
Stephanie Flynt McEben:
I know. And she’s supposed to be like fancy, legally something.
Jack Rosen:
I know. So now the hosts of the podcast are me, you and Nala.
Stephanie Flynt McEben:
Hey, you’re now a host since Michelle’s not here to stop it. You are a host.
Jack Rosen:
I’m finally free of Michelle bullying me about not being a host. There is that.
Stephanie Flynt McEben:
Love it.
Should I kick us off? Or I don’t even… Wait, which-
Jack Rosen:
It’s a whole new era of the podcast. I don’t even know if we’re kicking it off or just doing sort of a stream of consciousness thing, and then eventually we get to the interview.
Stephanie Flynt McEben:
Yeah, that sounds great. We’re going to hear from our pal Ian Watlington about all things snow and navigating somebody who uses a wheelchair in the city, and all of the chicken nugget-like things that people will sometimes put on curb cuts. Just a note to folks who may not realize, don’t put snow on curb cuts, because then it turns into ice, and then that could really hurt disabled people. So let’s make that our 2025 resolution to make sure that we protect the lives of all people.
Jack Rosen:
Yes. In fact, I’ll go a step further. Don’t put anything on the curb cuts really.
Stephanie Flynt McEben:
Thank you. Or especially those scooters.
Jack Rosen:
Those should be on them, the little bumps that I’m forgetting the term for, but nothing else.
Stephanie Flynt McEben:
The truncated domes, I think is what they’re called?
Jack Rosen:
Is that… If only we had someone who knew a ton about the ADA, mostly through voting, but she knows the ADA and could tell us what those are called.
Stephanie Flynt McEben:
Right.
Jack Rosen:
Anyway, enjoy our interview with friend of the pod and NDRN alumni, Ian.
Michelle Bishop:
So Ian, thank you so much for joining us for the podcast today. This is our special snowed in episode because of the rather unexpected amount of snow that we’ve gotten in the DC area. This past week has us all shut into our homes. And I’m betting it did the same thing to you.
Ian Watlington:
Exactly. I’ve been home and just hanging out. Well, I’ve been working. Let’s not discredit that, but I’ve been working, but pretty much stuck in my apartment.
Michelle Bishop:
Same here. Honestly, I tried yesterday to go outside for the first time to brush off my car, and in attempting to clean the snow off my car, I fell.
Ian Watlington:
Oh, no.
Michelle Bishop:
I know. Which you know is a very serious issue in the life of a person with a disability. You can’t just go outside in all this.
Stephanie Flynt McEben:
Ian, the only time I’ve gone out is to play Frisbee with my dog because she’s obsessed with playing Frisbee in the snow.
Michelle Bishop:
I mean, she’s a dog. I respect it. But can I tell you, the only response I got from my family about me falling while trying to brush off my car is, “I hope one of your neighbors captured it on their Ring cameras.”
Ian Watlington:
Oh, well that’s not very loving.
Michelle Bishop:
Mom.
Ian Watlington:
Yeah.
Stephanie Flynt McEben:
I was about to say, was that Carol? Because that sounds like a Carol response.
Michelle Bishop:
You know she’s a savage. So yes.
Stephanie Flynt McEben:
Shout out to Carol.
Ian Watlington:
She’s spicy.
Michelle Bishop:
So let’s talk about it, Ian. We wanted to pull you in on this episode as our resident expert on being snowed in as a person with a disability. Because you’ve been in the DMV for years now. You have gone through many… Also people don’t know in the DC area, we like to give ridiculous names anytime a single snowflake falls from the sky, Snowmageddon, Snowpocalypse, it’s very dramatic around here. And you’ve weathered a bunch of those.
Ian Watlington:
Right.
Michelle Bishop:
And talk a little bit about what it’s like as a person with a disability, especially the preparedness and response measures that we see from not just DC, we’re not here picking necessarily on the District of Columbia, from a lot of local governments in terms of their snow maintenance.
Ian Watlington:
Well, yeah. I wasn’t here for Snowmageddon, I don’t think, but I was here for Snow Apocalypse or however we called it. You’re exactly right. We come up with ridiculous names. But no matter… I mean, if a significant amount of snow falls, the lack of planning becomes very obvious rather quickly because then you have lovely, and I support my fellow drivers as much as I can, but when they start doing the streets, it brushes all of that snow debris, which is now a combination of snow and ice, can’t just have snow anymore. We have to have ice because they wait a while, and it goes right up on the curb cut. It’s like perfectly placed to do that. And I have made a big stink about this for many years because…
This one’s a little bit different because there’s a lot of ice. And I don’t know how my new motorized chair does with that, but I’m assuming not so well, so I’m being very careful. But when it’s time to get out of the house, you shouldn’t still have an ice block of slush and ice and dirt and whatever at the curb. And it’s just like nobody thinks about it. It’s just like, “Well, I guess they think I’ll just go around it somehow,” but I’m not sure.
Stephanie Flynt McEben:
Well, also… Oh, I’m sorry, Ian.
Ian Watlington:
No, it’s okay, Stephanie. I’m just not sure what their logic is or what they think or if they’re even thinking of us at all.
Stephanie Flynt McEben:
Well, that’s what I want to know. Isn’t it common… Because I know that I’ve seen it done where they will literally shovel the snow onto the curb cuts. There’s snow already there, of course. But I’ve heard about different folks having to deal with snow that is being shoveled even more onto the curb cuts. Is that something that you’ve experienced?
Ian Watlington:
I’ve mainly experienced the snow shovels on the street clearings covering the curb cuts. But I know a lot of times I have friends that live in suburbia, and a lot of times a neighbor will be so kind to put their snow on a ramp or a curb cut. So it’s an issue that people think it’s just a lovely place to put the snow. And what bothers me is nobody seems to care. And what I don’t understand further is that they’re creating more of a problem for themselves in the future. So for example, if I were to go outside and I were to try to get around the massive curb cut snow ice ball thingy, I’d most likely get stuck. And then who do I call? Except when I’ve gotten stuck before in other instances, which thankfully hasn’t been a lot, you call the fire department. The fire department can just get you out of that one little situation, it can’t take care of the weather. But again, the first responders even aren’t prepared.
Michelle Bishop:
Nor do we need to give our first responders more work to do in the middle of a weather emergency.
Stephanie Flynt McEben:
Right.
Ian Watlington:
Exactly.
Michelle Bishop:
Those things that are preventable, we should probably try to prevent, because they’ve got a lot on their plates when the weather goes wrong.
Ian Watlington:
Right, that’s why I’m hanging out at home. Exactly. I’m not trying to give anybody any extra work. I just wish I felt relevant. Does that make sense?
Michelle Bishop:
It does. Because I think something you said in the beginning to me is true. I think they’re not thinking about us at all. I think people are thinking they see a convenient place to pile the snow and they’re not thinking, “There’s probably a reason we built the curb that way. Why would you take the extra step of making it cut away if someone didn’t need it?” I think they’re not thinking about us.
Ian Watlington:
No. No, I don’t think so either. And I’ve tried calling the city council. I don’t know how many years ago. If you can believe this, I’ve been in DC now for 13 years, and so I can’t remember exactly when this was, but I was on the local news about the curb cut issue. So this is an issue near and dear to my heart, but I feel like I’m out of… I’m a professional advocate, but I feel like I’m out of strategies because I don’t know how to make it seem important to really focus on this issue.
Michelle Bishop:
Yeah, that makes sense to me. And I think it’s not even just the inconvenience of it, right? It’s really inconvenient if you can’t get out of your house. It’s inconvenient if you get stuck somewhere trying to get over some snow and the fire department has to get you out and all of that. But it’s also dangerous.
Ian Watlington:
Right.
Michelle Bishop:
In a number of ways, it’s incredibly dangerous. Wheelchairs and scooters that go sliding on ice can have serious consequences. A wheelchair that gets stuck in the snow could tip, and the person who relies on it could fall out and get injured. And in my experience, a lot of people who use wheelchairs and scooters end up rolling in the street, which is dangerous enough at any time, but especially in snow conditions where the roads are already going to be narrower, because snow piled up on the side of the roads, and the roads are slick, and cars don’t necessarily have the same level of control, and they can’t stop as fast. It’s dangerous. People could get hurt. And there are people who get hit in the street in their wheelchairs and die. It’s such a serious issue, and I agree, it’s really frustrating that we can’t get a spotlight put on it.
Ian Watlington:
There’s an acquaintance of mine in the Denver area, which is another area that experiences snow a little bit more often, but they’re not as on top of it as you might think either. And I have an acquaintance that did decide to go in the street and was unfortunately killed, because nobody could see him or people stopped but slipped and hit him. So I mean, that’s the thing about it, is it’s more than an inconvenience. It’s a issue of public safety. Because everybody’s inconvenienced during a blizzard or a big snow event, I should say, because this isn’t a blizzard I would call, but it’s significant enough to disrupt lives and people still need to get to doctors and to grocery stores. I was lucky this time, I really, really planned ahead and got my fridge stocked and all of that, so I would be able to be in the apartment comfortably at least.
Michelle Bishop:
That’s true. Although we’re also fortunate that when the weather takes a turn, we get to work from home. And not everyone can do that. There are disabled people who are essential workers that have to go into the workplace even when it snows.
Ian Watlington:
Yep, that is exactly right. And yeah, maybe I’ll get back on… This is kind of inspiring me to get back on my advocacy horse about this. I just said the word advocacy horse. Wow.
Michelle Bishop:
You did.
Stephanie Flynt McEben:
I love it though.
Ian Watlington:
Yeah.
Michelle Bishop:
It’s complicated with the wheelchair and the horse, it’s becoming very complicated metaphor.
Ian Watlington:
Yeah, it is. I did kind of muddle things and complicate things all with one metaphor. But maybe I’ll get on it again because it’s just frustrating. And one thing, people with disabilities share a lot of things in common because of what it’s like to live with a disability regardless of what the disability is. But one of the things that I think a lot of us share is the feeling of not being in control, because someone else is in charge of whether you get out of your apartment, whether you have medical supplies. We’re used to having to rely on others to get our basic needs met because we don’t have a choice. But I think it’s really when we can, we should help folks with disabilities out so they don’t have to feel out a control or trapped. That’s what you all do at NDRN is help people get their agency back and their control back.
But that’s something I think that people with disabilities often share is just that lack of control of your own destiny or your own future, or whether you’re going to get to go to the grocery store. It can be as big or as little of a thing as you want, whether it’s the grocery store, your own destiny, or whatever. But it’s that lack of control that I think is particularly what gives me the anxiety and what makes me feel less than comfortable in my own home or in my own apartment, is just that anxiety of, well, I have to be here because of circumstances and what if something happens? So I try to push some of those thoughts in the back of my mind because I think I have to keep moving forward. But it would be nice to have a little bit more empathy and a little bit more action on the city’s part to eliminate some of the problems and have an idea of what it really causes as far as stress and anxiety.
Michelle Bishop:
The whole time that you’re talking about this, the only thing I can keep seeing in my mind is… I think people know I grew up in upstate New York, and when I say upstate New York, I mean up upstate, like not that far from Canada upstate New York.
Ian Watlington:
Right.
Michelle Bishop:
The very snowy part of New York, where snowstorms are a real regular part of your life, which is part of the reason I don’t go out that much when it snows here because I don’t trust drivers who didn’t grow up in snowy areas to be on the road with me. Because you learn and you unfortunately learn some of it through trial and error, and I have been behind the wheel before and lost control of my vehicle on ice. And it is the single most terrifying experience. You’re in a car, you can’t control where it’s going, you can’t stop it from moving. You just really essentially have to wait it out. I spun out on a bridge once. I, actually in the same snowstorm, got on the highway and my car had turned around backwards. It’s terrifying. And no one should feel that feeling, that loss of control in their own lives.
Ian Watlington:
That’s how I feel. That’s certainly my feeling. Again, not all of us get to have control all the time, but this is a chronic thing that people with disability experience for a variety of reasons. So some of the issues that we can control and mitigate some of that feeling of lack of control, we ought to do it. And again, it’s how do we make this important enough to be heard? That’s my big question.
Stephanie Flynt McEben:
Yeah. And I want to go back to your point about control, right? Because while I understand that we can’t have control of all the things, there’s of course a lot of attention paid to the roads in order to ensure that they are clear. And the fact that, I’m not saying don’t clear the roads, don’t come at me transportation driver enforcers or whatever they call them. But what I am saying is that it’s important for us to ensure equal access for disabled people who utilize those curb cuts. And I think even looking at different things of what can we do? I mean, of course we work to educate and those types of things, but I think that even hearing you talk about writing to your city, to the city council members and trying to continue to hit those points home, I think that, while different things like that may not seem like they’re working the first time or even the second time, I think that sometimes what it comes down to is trying to figure out where to educate the people that need that education.
Ian Watlington:
Exactly. I couldn’t agree more.
Michelle Bishop:
I got to say advocacy horse, Ian, is my favorite version.
Stephanie Flynt McEben:
I’m here for that term.
Jack Rosen:
We will be generating that in chatGPT and using it as the promotional art for this episode.
Ian Watlington:
The advocacy horse.
Michelle Bishop:
With Ian. I think it needs to be Ian and the advocacy horse in the image.
Stephanie Flynt McEben:
Yes.
Michelle Bishop:
This is what AI was created for, honestly.
Ian Watlington:
Right.
Michelle Bishop:
This is how AI makes our lives better.
Stephanie Flynt McEben:
For this specific moment.
Ian Watlington:
I’m so glad that I’ve provided this additional fodder for you all. I think it’s hilarious. I appreciate you going forward with the advocacy horse.
Stephanie Flynt McEben:
Yes.
Michelle Bishop:
I remember you being on the news back in the day, Ian. I do remember that.
Ian Watlington:
Do you remember that? Yeah.
Michelle Bishop:
I do remember that news story. It was a good story. It was a good story. It takes so much to get people to stop and think about disability when they go about doing the things that they do. I don’t know if you guys feel this way. I often feel like if we’re not at the table reminding people about disability, and sometimes I say 90% of my job is showing up to meetings and saying, “You can’t do that because it’s not accessible.”
Stephanie Flynt McEben:
Retweet.
Michelle Bishop:
Right? Because people, they don’t think about it when we’re out there.
Stephanie Flynt McEben:
No.
Michelle Bishop:
I feel we have to go around behind the people who clear the sidewalks in the streets and be like, “You can’t put it there.”
Stephanie Flynt McEben:
It’s like if you’re not at the table, you’re on the menu at that point, or even off the menu in some of these circumstances.
Michelle Bishop:
The accuracy. And we have to figure something out because we don’t necessarily have the capacity to have… Although it would be fun to stage an action where a disabled person follows every city worker in cities across the country as they clear snow and reminds them not to put it on the curb cut.
Stephanie Flynt McEben:
Oh my gosh. Kind of like Live PD, but let’s make it snow insured, disabled rights edition, and then we’re going back and forth from one city feed. Let’s go to Denver where so-and-so is following this around, and let’s go to Washington DC where so-and-so is following these city workers around. Oh my gosh. I think we just came up with a million dollar show idea. Live Snow.
Michelle Bishop:
Can you imagine [inaudible 00:19:35].
Jack Rosen:
I might have to pitch this as my next video project.
Michelle Bishop:
Yes.
Stephanie Flynt McEben:
Oh, wait. You can call it The More You Snow. Get it? Like know.
Michelle Bishop:
Stephanie, I’m not going to lie, that one was pretty good.
Stephanie Flynt McEben:
Thank you.
Jack Rosen:
Yeah. That one got a chuckle out of me.
Michelle Bishop:
I like it. The more you know, like those things they used to do on TV with the shooting… Yes.
Stephanie Flynt McEben:
Yes, The More You Snow.
Michelle Bishop:
I like it. I dig it. Actually, Ian and I have done something similar before. Ian and I did a great piece with NPR on All Things Considered years ago where we went around with a reporter to polling places and literally showed her how they were inaccessible. And it was fascinating. There was a ramp that Ian went up, and then when he opened the door, it basically closes off the ramp so he can’t get inside.
Ian Watlington:
Yes
Stephanie Flynt McEben:
What?
Michelle Bishop:
Yeah. Some of the biggest design fails you can imagine that people just don’t-
Ian Watlington:
Right. Yeah. You opened up the door and it hit the chair and block the ramp and you really couldn’t get in because it opened outward. That was… Yeah. I work at Amtrak now, and so I work with engineers like crazy and you just… And architects, and you just see some of the failures of engineering. I mean, I love these folks, but it’s just like, “What were you thinking?” And they probably weren’t, but yeah, there’s just, again, it’s that lack of thought that is frustrating.
Michelle Bishop:
I think that’s really true. I have a friend who’s an engineer who makes voting systems, and he told me one time in conversation, he said, “Michelle, a solution that works for 75 to 80% of the population is a huge success as an engineer.” And I was like, “But in civil rights, that’s a failure.”
Ian Watlington:
Right, exactly.
Michelle Bishop:
It’s not everybody. It’s just completely different worlds. So I can imagine an engineering solution to snow removal that works for 80% of the people would seem great to an engineer except to the 25% of the population that have disabilities that can’t use it.
Ian Watlington:
Right.
Stephanie Flynt McEben:
And still growing.
Ian Watlington:
I mean, it’s just like it crosses… People with disabilities aren’t on the train as much as people without disability, duh. That would be the case. So sometimes the answer I get is, “Well, we have low ridership with people with disabilities,” and it’s my job to say, “So that ridership doesn’t count?” And I think that’s what we’re all getting at here, is we want to be counted and among the people that you consider when you make these key decisions. I don’t think that’s too much to ask either.
Michelle Bishop:
Oh, see, now I’m going to get on my advocacy horse. Because what I feel like I hear from that is also that people with disabilities should run for local offices and be the decision makers.
Ian Watlington:
Yes.
Michelle Bishop:
These things are hyper local. You could run for your city council or something like that and have a real impact. And like Stephanie said, be at the table instead of on the menu. So a little food for thought for some of our disabled listeners around the country.
Ian Watlington:
Yeah, I think you’re exactly right. Because what do we need? We need power. I mean, I hate to put it that way, that basically, but it is about who has power to make these decisions. And so we do need to run for office and become journalists and do the things that can really shed light and give people power to make better decisions.
Michelle Bishop:
Y’all, did we talk about all the things?
Stephanie Flynt McEben:
I think so.
Michelle Bishop:
Let’s talk about personal… Before we let go, Ian, let’s talk about personal snow day preparations. I want to hear what y’all bought at the grocery store before the snow came.
Ian Watlington:
Since going sober, I’ve become addicted to soda. It’s got to be addicted to something.
Michelle Bishop:
That’s hilarious. So you just have a fridge full of soda?
Ian Watlington:
So I have a fridge full of soda, and I have microwave dinners and lots of peanut butter and jelly.
Michelle Bishop:
I have so much respect for that. The last time I was in line at the grocery store before a snow storm came, I was like, “Man, I love DC, because everybody in line has nothing but beer and ice cream in their cart.”
Ian Watlington:
Yes.
Michelle Bishop:
No practical items whatsoever. And I’m going to say 20 bucks says Jack has pizza.
Jack Rosen:
Would you like me to Venmo it to you or?
Stephanie Flynt McEben:
Wow. Yo, pizza is essential, okay? The way that I prepped, so I got some sparkling water, because we ended up going to Wegmans, and Wegmans has the best sparkling water, so I got sparkling water-
Michelle Bishop:
You know I’m from upstate New York, right? I already told you I’m from upstate New York. So yes, shout out to Wegmans.
Stephanie Flynt McEben:
Yes. Their sparkling water is like the bomb.com double click.
Michelle Bishop:
Wegmans is amazing.
Stephanie Flynt McEben:
And so I got a lot of sparkling water. I got some Ben and Jerry’s Boston Cream ice cream topped, so there’s a huge top of chocolate coating on the top. I got some frozen pizzas, and then I got a veggie tray as well as some vegan mayonnaise. Follow Your Heart vegan mayonnaise is my favorite, so that I could make carrot tuna. And let me tell y’all, after this, I’m probably going to get some carrot tuna because that sounds so good right now.
Michelle Bishop:
The way y’all have, just Stephanie and Jack alone, have such different shopping priorities.
Ian Watlington:
Really.
Michelle Bishop:
I got mint chocolate chip ice cream sandwiches.
Stephanie Flynt McEben:
Ooh.
Ian Watlington:
Oh.
Michelle Bishop:
Cold weather makes me crave ice cream, which I realize is weird.
Stephanie Flynt McEben:
No, it’s not weird. I have to have something. Oh, and we got a fruit tray because I was trying to be healthy. Well, I also got the veggie tray, so I don’t know why I’m defending myself over here.
Michelle Bishop:
And vegan mayo. I don’t think you actually need to defend your healthy choices at all, Stephanie.
Stephanie Flynt McEben:
Oh my god. Vegan mayo is so good. You can make a quick garlic aioli or you can put some… Here’s my Maryland coming out. I like to put some Old Bay in my vegan mayo, and I will dip carrots in that all day long.
Michelle Bishop:
Not Old Bay vegan mayo. Okay, well, now we’re going to have to do some sort of weird Stephanie vegan cooking show.
Stephanie Flynt McEben:
Okay. I’m here for it. I’ve been trying to master a vegan mac and cheese recipe for like ever, and I cannot get it perfect, and it’s driving me bananas. I mean, I make pretty decent vegan mac and cheese, but I want to make perfect vegan mac and cheese.
Michelle Bishop:
I suspect it’s probably the lack of cheese.
Stephanie Flynt McEben:
Well, no. There’s like… No.
Ian Watlington:
Sorry that was funny.
Stephanie Flynt McEben:
That is pretty funny. I will give Michelle that.
Michelle Bishop:
I used to be vegan so I can pick on it.
Stephanie Flynt McEben:
I mean, look, vegan mac and cheese if done right is really good. It’s obviously different from actual regular macaroni cheese, but it’s pretty good. I’ve figured out a college kid type of vegan mac and cheese that I like, which is garlic powder with, you get some ramen noodles, right? And then you make the ramen noodles in the microwave or whatever, whatever. Don’t pour the sodium seasoning on there, but go ahead and stir in some vegan butter, some salt, some garlic powder, and some nutritional yeast. The nutritional yeast will thicken it up and it tastes like cheap college kid vegan mac and cheese.
Michelle Bishop:
I just didn’t wake up this morning thinking I’d hear someone say nutritional yeast in a sentence.
Stephanie Flynt McEben:
I love Noocho. It’s so good.
Jack Rosen:
I did not know that was a thing.
Stephanie Flynt McEben:
What?
Michelle Bishop:
How does that shock you?
Ian Watlington:
I didn’t really know that either.
Michelle Bishop:
You’ve met Jack. That should not be shocking.
Stephanie Flynt McEben:
Noocho is so good. Okay? I will have to make some Noocho stuff and bring it up. Like Noocho on kale chips is chef’s kiss.
Michelle Bishop:
I feel like it’s settled the next time it snows, we’re all camping out at Stephanie and Quinn’s, and they’re just going to make us some weird vegan recipes.
Stephanie Flynt McEben:
Quinn will be out because Quinn is like, “Nope, don’t want to eat the vegan stuff.” But Quinn will eat the vegetarian stuff.
Michelle Bishop:
I will bring the nutritional yeast.
Stephanie Flynt McEben:
Yes.
Ian Watlington:
Wow.
Michelle Bishop:
Oh my gosh. Look, this conversation has gone away off the rails. Okay, but-
Stephanie Flynt McEben:
The rails, and Ian works for Amtrak. It’s gone off the rails.
Michelle Bishop:
Oh, no did I do a Stephanie Pun by accident? Oh, no,
Stephanie Flynt McEben:
No. You did one earlier. You said weather, like weathering the storm.
Michelle Bishop:
I heard that one when it came out of my mouth. I was so proud of you for not pointing it out.
Stephanie Flynt McEben:
I had to laugh though. I was like, “Oh my gosh. I hope nobody thinks that I’m laughing at Ian.”
Michelle Bishop:
Ian, lots of bad railway puns in your business?
Ian Watlington:
Oh my God, there’s so many. Of course, I’m not going to be able to think of…
Stephanie Flynt McEben:
You also have lots of training.
Ian Watlington:
Oh God, training, off track, off the rails. Those are the big ones.
Michelle Bishop:
Speaking of bad jokes… Well, first I’ll say, Ian, thank you so much for joining us. This was amazing.
Ian Watlington:
Thank you.
Stephanie Flynt McEben:
It was, thank you.
Ian Watlington:
I so enjoy working with you guys. I really do. So keep up the good work and I’ll let you know about if I get up on my advocacy horse.
Stephanie Flynt McEben:
Yes, please.
Michelle Bishop:
So Stephanie usually ends the episodes with, I almost said a bad joke. I’ll just say a joke. If you want to hang out and hear Stephanie’s joke of the month.
Stephanie Flynt McEben:
Okay. I don’t know what my joke is yet because I didn’t know we were doing intros and outros today.
Michelle Bishop:
We’re not really, I just was-
Stephanie Flynt McEben:
I didn’t come prepared. I mean I they could do an encore joke.
Michelle Bishop:
[inaudible 00:29:10] you’ve been very punny today. You what?
Stephanie Flynt McEben:
I can do an encore joke from two years ago. What do you call someone who steals a bunch of fruits?
Jack Rosen:
What?
Stephanie Flynt McEben:
A smoothie criminal.
Jack Rosen:
Okay. And Stephanie, who did the song you’re thinking of?
Stephanie Flynt McEben:
Michael Jackson.
Jack Rosen:
There we go, okay.
Michelle Bishop:
Oh, no. I blocked that out.
Jack Rosen:
I’ll never forget. Ian, two years ago, Stephanie told this joke and then said, “You know, Smoothie Criminal, like the song by Santana.”
Ian Watlington:
Right. Oh, wow.
Jack Rosen:
Yeah.
Michelle Bishop:
Yeah. It was a whole thing. I clearly blocked it out.
Ian Watlington:
That happened.
Michelle Bishop:
It did.
Stephanie Flynt McEben:
What can I say? It was a thriller.
Ian Watlington:
Oh man, I got to go.
Outro Music Plays
The gang celebrates the holidays with a slightly disorganized episode talking about our holiday traditions and how we’re celebrating this year. Sort of featuring special guest Quinn McEben.
Link to our Bonfire shop: https://www.bonfire.com/store/national-disability-rights-network/
Stephanie Flynt McEben: Well, hello, podcast listeners of the universe. We are doing a different episode this month, which is why I chimed in before Michelle could to introduce the fun episode. So I’m Stephanie Flynt McEben. I am one of your hosts here at the National Disability Rights Network for National Disability Radio.
Michelle Bishop: Hey hey, it’s Michelle Bishop, and I am the manager for voter access and engagement here at NDRN, and one of your hosts. And I didn’t have to start the episode, so I guess I just get to retire now, guys, and this might be my last episode.
Stephanie Flynt McEben: No, no, no, no, no, no, no, no, that’s not how it goes. Also I forgot to say that I’m a public policy analyst. Excuse me for butchering my title after being here for three years.
Michelle Bishop: And we also have a producer.
Jack Rosen: Hi.
Michelle Bishop: I got in there with that real quick on producer.
Jack Rosen: Really, even at the holiday spirit, you couldn’t acknowledge my hosting?
Michelle Bishop: Pro host.
Stephanie Flynt McEben: Pro host.
Michelle Bishop: Pro host.
Stephanie Flynt McEben: Honestly, that sounds fancy. Like I almost like the title of pro host because it like makes you sound all like fancy and like you’ve got your s–t together.
Michelle Bishop: Pro host for the holidays.
Jack Rosen: I gotta remember to bleep that out.
Stephanie Flynt McEben: Oh, I did that on purpose.
Michlle Bishop: She gave you the ish, she said she censored herself like a rap song on FM radio.
Stephanie Flynt McEben: Exactly.
Jack Rosen: True.
Stephanie Flynt McEben: We’re National Disability Radio, so we’ve gotta like, you know, pretend like we’re the radio.
Jack Rosen: That’s true, we don’t want the FCC to fine us. Anyway, hi, everyone, Jack Rosen here. I am NDRN’s senior digital communications specialist.
Michlle Bishop: mean, maybe the FCC should fine us. I feel like, just like, you know, no press is bad press, right?
Stephanie Flynt McEben: I feel like Jack says that like every single time we meet to discuss anything podcast related.
Michelle Bishop That we’re gonna get fine or sued in some form?
Stephanie Flynt McEben: No, that no press is bad press.
Michelle Bishop: Oh, ’cause we’re definitely eventually gonna get sued.
Stephanie Flynt McEben: Yeah.
Jack Rosen: It usually is in the context of getting sued. Look, someone’s gotta sue us eventually. That’s how we make it in the industry.
Michelle Bishop: Just you know, waiting, I mean, we keep trying. I keep singing songs we don’t have the rights to and everything, and just everyone keeps letting us slide.
Stephanie Flynt McEben: Are we seriously advocating to get sued right now? Like I do not think our legal counsel would be for this.
Jack Rosen: Look, Stephanie, if you don’t have haters, you’re doing something wrong.
Stephanie Flynt McEben: ♪ Because the haters gonna hate, hate, hate, hate, hate ♪
Michelle Bishop Stephanie, you’re my favorite.
Stephanie Flynt McEben: Thank you.
Michelle Bishop: You know this is a sad time in my life. We’re in the post “Eras” era, and that’s just a very difficult time for me, so I appreciate you being supportive.
Stephanie Flynt McEben: You mean the post “Eras”?
Michelle Bishop: Exactly, Stephanie, you just get me.
Stephanie Flynt McEben: I know, I know, we’re both each other’s translators.
Michelle Bishop: It’s true, and it’s just, you know, a holiday season without watching grainy live streams of concerts I can’t afford to attend, it is just a very daunting prospect for me right now, so I appreciate all your love and support.
Stephanie Flynt McEben: Yes, retweet, and also too, like if you also wanna share your love and support and solidarity with me and Michelle, feel free to send an email to podcast@ndrn.org.
Michelle Bishop: That’s right, Taylor Swift. But anyway, so Stephanie, tell us about your holiday plans.
Stephanie Flynt McEben: Oh, wow, so our-
Michelle Bishop: End of the season, I guess we don’t have seasons. End of the year episode.
Stephanie Flynt McEben: Oh my gosh, okay, is this like season two? I don’t know.
Michelle Bishop: I don’t know. I don’t think we actually have seasons. This is not the most organized podcast in the universe.
Stephanie Flynt McEben: This is like chitchat holiday edition, and like yeah, I mean, I like the seasons pun anyway.
Michelle Bishop: Yeah.
Stephanie Flynt McEben: If you get that, feel free to email podcast@ndr.org.
Michelle Bishop: If you’re listening to this episode, you must really like us, ’cause we do not have any disability rights content planned.
Stephanie Flynt McEben: No, no, we’re getting a little up-close and personal, except not that personal. Anyway-
Michelle Bishop: So tell us about Nala’s holiday plans. I mean, your holiday plans.
Stephanie Flynt McEben: Oh yeah, my mine I guess are kind of important, I dunno. I’m going to Texas to spend the holidays with my wife’s family, which that’ll be exciting. Actually, we’re recording this on Tuesday, December, oh my God, I’m gonna get the date wrong, 17th, so I actually fly out on Thursday, December 19th, which is super exciting. And we got matching Christmas pajamas for our dogs, because of course we did, and we also got matching human pajamas that coordinate with our dogs’ pajamas because of course we did, so that’s exciting.
Michelle Bishop: So you’re getting back in touch with your southern roots for the holidays.
Stephanie Flynt McEben: I am. Well, the thing is, is like, we always have to have matching pajamas. Like Nala and I have done that for a while. Hopefully we’ll get their pictures with Santa. Apparently Bailey has never had a photo with Santa Paws, so it has to be fixed, ’cause Nala gets a photo like almost every year with Santa Paws, and she’s obsessed.
Michelle Bishop: Right, the scandal. I meant you were going to Texas is getting back in touch with your southern roots.
Stephanie Flynt McEben: Oh yeah, I mean, like, I’m going to like the panhandle of Texas. Quinn, did you have something to add? I said that. My wife is making a cameo on our podcast. You’re being recorded.
Michelle Bishop: We can’t hear Quinn, we just hear you yelling at Quinn.
Stephanie Flynt McEben: I mean, that’s per, I mean, they were like, oh.
Michelle Bishop: Ah, marriage.
Stephanie Flynt McEben: ♪ Love and marriage, love and marriage ♪ ♪ Doo doo doo doo doo doo doo doo doo ♪
Stephanie Flynt McEben: Anyway.
Michelle Bishop: Tell me, what’s in the panhandle of Texas?
Stephanie Flynt McEben: Well, my wife just came in here, so maybe they can describe, what’s in the panhandle of Texas?
Michelle Bishop: Tell us about the panhandle, Quinn.
Stephanie Flynt McEben: Quinn said nothing and then walked out.
Quinn McEben: I didn’t walk out.
Stephanie Flynt McEben: Oh, Quinn didn’t walk out, yay.
Quinn McEben: Cows, oil, eggs, basically that.
Michelle Bishop: Oil, there’s oil in the panhandle?
Quinn McEben: Yeah, it’s big oil and cow, pig, and Bailey is also joining.
Michelle Bishop: Is all the oil owned or like if me and Jack show up and we start like digging, is there a chance we could make some money here?
Jack Rosen: Yeah.
Quinn McEben: Well, my grandparents found some on their land when they were digging. Well actually, their cattle found some, which is like perfect for this story.
Jack Rosen: So I could be a Texas oil man, because that does sound fun, and I was watching “There Will Be Blood” last night.
Michelle Bishop: You give oil tycoon a little bit.
Jack Rosen: I would love to be an oil tycoon. I could have the big hat. I could have the alligator leather shoes. That would be fun.
Michelle Bishop: You’d have a belt buckle in the shape of Texas.
Quinn McEben: When I was looking for gifts, I found this thing that you can put your cowboy hat and so you can put it on the dash of your car, and it’s like a little sucker thing, like, you know, a suction cup thing.
Jack Rosen: That is so aggressively Texas, I love it.
Michelle Bishop: Most Texas thing I’ve ever heard.
Quinn McEben: All right, I’m gonna get out of this room. I’m sorry, guys.
Stephanie Flynt McEben: No, we wanted you to make a cameo.
Michelle Bishop: Now we can advertise this episode as having special guests.
Stephanie Flynt McEben: Yes.
Quinn McEben: Exactly.
Stephanie Flynt McEben: See, see, there we go, thank you. Thank you, Quinn, round of, okay, anyway.
Jack Rosen: I think Quinn might be one of our most frequent guests at this point.
Stephanie Flynt McEben: That’s fair, I mean, honestly, like Quinn and Amy are like pretty rad guests if I do say so myself. But anyway, what are y’all doing this year for the holidays?
Michelle Bishop: I feel like we just learned a lot about Jack, who wants to be, secretly wants to be a Texas oil tycoon.
Jack Rosen: I mean, I’m just saying it pays a little more than working in the nonprofit world.
Stephanie Flynt McEben: Okay.
Michelle Bishop: That’s fair. I’m oddly not that surprised too.
Stephanie Flynt McEben: So Jack wants to be an oil tycoon for the holidays. Didn’t realize we were going back to Halloween. Michelle, what are you doing for the holidays?
Michelle Bishop: Baking, guys, you know that’s my thing. We did a whole election day episode of me stress baking, so that’s my jam. I’m going to be making my famous frosted rollout sugar cookies. Christmas, I believe, is my biggest collection of cookie cutters. Well, nope, Halloween might be, but they’re rivals, it’s close, and I’m going to be making, you’ll be very interested in this, Stephanie, I will be making Taylor Swift’s recipe for chai latte sugar cookies.
Stephanie Flynt McEben: Oh my God, okay, are you planning on bringing Stephanie some cookies at the beginning?
Michelle Bishop I’m gonna have to. The Taylor Swift cookies are a big hit with the family.
Stephanie Flynt McEben: I can’t bake to save my life, so I’m ready for this.
Michelle Bishop: Oh, baking, my god, I can’t cook, so I have to bake.
Stephanie Flynt McEben: Fair enough, I can cook. I think I can cook anyway, but.
Michelle Bishop: So that’s my job. I’ll be making the desserts, so I’ll be doing a bunch of baking and then, I mean, my family is local these days, so I don’t have to go anywhere. I don’t have to travel, which is the best. I spent a lot of my life trying to get between St. Louis, Missouri, and Syracuse, New York during winter holidays, and that is brutal enough to last me a lifetime. I can’t tell you the number of times I’ve been stuck in O’Hare in a snow storm in the middle of the night, trying to get there for Thanksgiving, so I-
Stephanie Flynt McEben: God. O’Hare of all places, why didn’t you go through Midway? That might have to be cut out.
Michelle Bishop: We’re gonna get sued by O’Hare Airport. Of all the things we could have gotten sued by, we’re gonna get us sued by an airport. That’s so boring.
Jack Rosen: Hey, we’ve been doing a lot of work around antagonizing the airline industry lately. I just see this as an extension of that.
Michelle Bishop: It’s true, it’s a culmination of months and months worth of work.
Stephanie Flynt McEben: Fair enough, fair enough, oh my goodness. Okay, so do y’all have any funny stories? I know this is kind of weird, but like, do y’all have any funny stories from the holidays that like y’all wanna share with the people? I told ’em we were getting personal.
Michelle Bishop: Ooh, that’s a good question. Jack, do you have a story?
Jack Rosen: It’s less a story, more of a tradition. Most years we spend it with these family friends of ours, and it’s very sweet, the mom refers to me as her Jewish son and I get my own stocking, but usually it’ll be like, she’ll find like a star of David one or a Hanukkah themed one, and it’s really sweet, and we just spend it with them.
Michelle Bishop: That’s super cute, Jack. You know, for a while my family used to, we have some little kiddos back in the family again, you guys both know I have very young niece and nephews, but when we were just a bunch of adults celebrating Christmas, we did the grand tradition of ordering Chinese food and going to the movies on Christmas Day, and I feel like that’s gonna resonate with you.
Jack Rosen: Okay, so I’m trying to find a Chinese place in DC that’s open on Christmas day.
Michelle Bishop: They’re not open?
Jack Rosen: I’ve not had any luck. Literally my next call after this is calling up Chinese restaurants to see who’s open because I can’t find anything on OpenTable.
Michelle Bishop: I’m so sorry, that’s terrible. Are there at least good movies opening on Christmas day? Are you going to a movie?
Jack Rosen: My dad’s coming down, so maybe we’re thinking of watching the Bob Dylan movie, but decent chance we end up just watching football.
Michelle Bishop: Mm, do they play football on Christmas day?
Stephanie Flynt McEben: Oh God.
Jack Rosen: Yeah, actually Netflix got the rights to it this year.
Michelle Bishop: Netflix shows football?
Jack Rosen: They’re showing two games this year, and they’re making a big production out of it.
Michelle Bishop: Oh.
Michelle Bishop: Please do not send us angry emails just because I don’t know anything about football. I’m sorry, I apologize. I realize it’s incredibly un-American of me, but I’m not, I don’t watch football.
Stephanie Flynt McEben: I know about football tailgate food.
Jack Rosen: Oh wait, no, y’all should watch because the halftime show for the Ravens Texans game is Beyonce.
Stephanie Flynt McEben: Ooh.
Michelle Bishop: Oh, is she doing Christmas day? I thought she was doing the Super Bowl. Who’s doing the Super Bowl?
Jack Rosen: Kendrick Lamar is doing the Super Bowl.
Michelle Bishop That’s right, Kendrick Lamar, and he’s probably just gonna do “Not Like Us” six times in a row or something, which is not a complaint from me. That’s kind of what I’m hoping will happen. Okay well, then I’ll definitely put on Beyonce on Christmas day, I’m down.
Jack Rosen: I’m going to his tour with SZA, and I need to hear him do “Not Like Us.”
Michelle Bishop: He’s touring with SZS, that’s gonna be amazing.
Jack Rosen: Yes, though I’m so annoyed because the local DC show is at, I don’t know what it’s called, it’s FedEx Field, but they changed the name and-
Stephanie Flynt McEben: Oh, did they?
Jack Rosen: Yes, it’s Northwestern now, I think.
Stephanie Flynt McEben: Oh God.
Jack Rosen: But they were charging more than the other stadiums, and it was so annoying to go to that like crappy venue.
Michelle Bishop: That’s weird.
Jack Rosen: You know what, FedEx Field, you can sue us. I will stand by what I said, It’s a bad venue.
Michelle Bishop: Whoa, whoa, this episode took a turn real fast. Little-known fact, NDRN staffer Corey Bernstein, big SZA fan.
Stephanie Flynt McEben: Who is SZA?
Michelle Bishop: Oh, Stephanie.
Jack Rosen: Really?
Stephanie Flynt McEben: Yeah.
Michelle Bishop: Stephanie.
Stephanie Flynt McEben: Is it SZA or SZER?
Jack Rosen: S-Z-A, SZA.
Michelle Bishop: Oh my God, Stephanie.
Jack Rosen: She’s really good. She’s like R&B and pop, like.
Michelle Bishop: Oh, her album’s a masterpiece.
Stephanie Flynt McEben: Okay, I will look up SZA after this.
Jack Rosen: Oh my God, I saw her last year at a music festival, and I was like, “Oh, I don’t really know her music,” and then she’s doing her headliner set, and I’m like, “Oh wait, I know every single one of these songs.”
Michelle Bishop: Yeah, you know her whether or not you think you do, for sure. She’s everywhere, her music’s incredible.
Stephanie Flynt McEben: The more you learn.
Michelle Bishop: Don’t hurt us like this on the holiday episode, Stephanie.
Stephanie Flynt McEben: I’ll try not to, oh my goodness. Jack, do you have any funny Christmas, oh, sorry, Jack already went, oops. Michelle, do you have any funny Christmas stories?
Michelle Bishop: Do I have any funny Christmas stories?
Stephanie Flynt McEben: That’s the question.
Michelle Bishop: I can think of a couple things. Well, Jack was talking about stockings and it reminded me we still do stockings with our family and everyone has their own stocking, and the biggest stocking in the house by far, it’s ginormous, belongs to Mason the Yorkiepoo.
Stephanie Flynt McEben: Yes.
Michelle Bishop: Yes, the dog has a ginormous stocking with his name and his face on it because he is by far everyone’s favorite member of the family.
Stephanie Flynt McEben: I love that so much.
Michelle Bishop: There’s no competition. There will be treats in that bad boy on Christmas morning, I promise you. But okay, a funny story, I was thinking about this when you asked it. So I’m a youngest child, which I assume all of you know, because even if you haven’t heard that, I feel like it’s incredibly evident in my personality that I am a youngest child. You don’t talk this loud for no reason. So growing up, Christmas Day used to be me and my older brother and my parents, like in the morning, right? We come down and we do gifts and everything, and then we’d see like, you know, the rest of our family later in the day, and we’d see them on Christmas Eve. So Christmas morning, so first of all, it somehow became my job to hand out everyone’s gifts, like it just became a thing, I don’t know why. So I’d put on this like little, you’d love it, Stephanie, little sequin-covered Santa hat.
Stephanie Flynt McEben: Oh my gosh, yes.
Michelle Bishop: I still have it, and I would hand out all the gifts, and one year, we’re sitting there and I kid you not, I’m like 27 years old at this point, and this is not like a childhood memory, I’m an adult, guys. I have a job and a 401k and health insurance and everything. I had to fly in for the holiday. We’re opening gifts, everyone has a gift that’s, you know, from Mom and Dad, from Chris, that’s my brother’s name, whatever. Every single one of my gifts is from Santa. I was an adult, guys, I was an adult. I was like, literally, not only do my parents still give me gifts from Santa as an adult, but my older brother still gives me gifts from Santa.
Stephanie Flynt McEben: That is wild. That actually makes me think of what my dad has been doing for the past five years when he wraps gifts. So like, he just puts like random people on there, like from George Clooney. Like he got me a Nespresso like a couple years ago, and so he put from George Clooney.
Michelle Bishop: Oh, he does ads for Nespresso, I think.
Stephanie Flynt McEben: Yeah, I think so. But like he will put like different politicos, and yes, he does both sides of the aisle. I’ve gotten a present from Trump. I’ve gotten a present from Joe Biden. I’ve gotten a present from, oh gosh, Paris Hilton, I think. And then I got a present from, oh God, what is his name? Or I don’t know, anyway, my dad like does, oh, and of course the Santa presents, but yeah, no, nobody gets presents from like people, but celebrities in our house now, which is so funny.
Michelle Bishop: I mean, it’s not like I get like some presents that are from Mom and Dad and then some from Santa. Every single one of them is from Santa.
Stephanie Flynt McEben: Yeah, that’s wild.
Michelle Bishop:: Every single one of ’em, and the best part is the ones that are from my older brother, it’s like, it’s one thing when it’s from my parents and it’s beautifully wrapped and it has a little gift tag on it that’s like to Michelle from Santa. It’s another thing when you get one that’s like wrapped in an old page of a desk calendar with some of his old appointments on it, and he wrote from Santa in a Sharpie on it. That just doesn’t, it doesn’t.
Jack Rosen: That’s hilarious.
Michelle Bishop: It’s not giving Santa Claus.
Stephanie Flynt McEben: From Santa, the accountant. I don’t know what your brother does, but.
Michelle Bishop: He’s a graphic designer.
Stephanie Flynt McEben: Okay, from Santa, the designer.
Michelle Bishop: It’s really hilarious stuff on his old desk calendars. But so the morning it happened, like Christmas morning when we finally realized, I was like, “Guys, where are all my presents from Santa?” And I was holding a gift from my older brother and I looked down it and I said, “Actually, I think this one is from Sarta,” because that’s how bad his handwriting is. So to this day, I’m not 27 anymore, I’m not gonna tell you how old I am, but I am no longer 27, to this day, I get at least one gift every year of something incredibly random from Sarta, who labels the gift in a Sharpie.
Stephanie Flynt McEben: That is so funny.
Michelle Bishop: That is a long running-family tradition. I mean, short-running family tradition, ’cause obviously I’m not 27, but you know, I’m not like a day over like 32, right? So.
Stephanie Flynt McEben: I was about to stay. Yeah, aren’t you like 30, flirty, and thriving or something?
Michelle Bishop: Right, just kidding, this all happened like last year, ’cause I am so young, but.
Stephanie Flynt McEben: I love this so much. Oh goodness, speaking of presents, I’ll never forget when I was in the ninth grade. So I really love playing piano and have been playing piano since I was four, and so I opened a Christmas present from my parents in the ninth grade, and I was looking at it, I’m like, “What is this?” Now, to describe it, I’m gonna try to describe it as best as I can without completely and totally giving it away. But there was like this lever that went up and down and up and down and I’m like, “Did they seriously just give me a lever?” Like I’m about to throw it back. Some of my millennial, my like millennial, early Gen Z people are gonna get this. But like, gave me a lever, like it was “The Emperor’s New School,” like pull the lever, Cronk, or whatever, and so I was just like, “They gave me a lever,” and then I continue to look, and I’m like, “This thing has a chord in the back.” I’m like, “What is this supposed to do?” And so like, I’m literally playing 20 questions, trying to figure out what this is, and finally like my parents give up, or my mom specifically gave up and was like, “Just come into our room.” And I was like, “Oh my God, am I in trouble for not being able to guess like what this is?” And so I go in there, and y’all, it’s like an electronic Yamaha keyboard. They wrapped up like a keyboard pedal for me for Christmas and confused the helicopter out of me. So yeah that was a thing. Blindness Christmas moment, if you will. ’cause I’m pretty sure it had Yamaha on like the bottom of the pedal
Michelle Bishop: Did it like, was it like ingrained or didn’t stick out? Could you figure out it’s in Yamaha? You can’t give part of a gift to a blind person, I feel like.
Stephanie Flynt McEben: I know, it just seemed, I mean, like, I don’t remember if it did. If it was engraved, I didn’t see it, but like, I can also, like, I could also see if it was like, you know, printed on a sticker at the bottom or something, and I just didn’t know it was there. So yeah, that was a weird Christmas, but.
Michelle Bishop: They got you pretty good with that one.
Stephanie Flynt McEben: Yeah, I still have that keyboard.
Michelle Bishop: Fabulous, wait, you have to play something for us.
Jack Rosen: Yeah, when are we getting the jingles, Stephanie? You’ve been-
Michelle Bishop: Oh.
Stephanie Flynt McEben: Oh no, oh, the jingles.
Stephanie Flynt McEben: Here we go.
Michelle Bishop: It starts.
Stephanie Flynt McEben: I’ll work on the jingles.
Michelle Bishop: You have been promising to write jingles-
Stephanie Flynt McEben: I know.
Michelle Bishop: For like how long has it been now, Jack? It’s been a while. He’s been very anxious for the jingles. It’s a whole thing.
Stephanie Flynt McEben: It really is, though. Okay, I will work on that in the new year.
Michelle Bishop: And it’s your fault you brought up the keyboard.
Jack Rosen: Think about how much money we could save if instead of having to pay for a music library, all of our podcasts, videos, et cetera, just have jingles done by Stephanie.
Stephanie Flynt McEben: I didn’t realize we had to pay for a music library. That’s kind of annoying.
Jack Rosen: We do, or otherwise we’d be using copyrighted music and getting sued.
Stephanie Flynt McEben: Oh, well you wanna get sued, so.
Jack Rosen: In that case, we’d be too guilty. I don’t wanna get sued for that one.
Michelle Bishop: Yeah, it’s gotta be something we can potentially defend ourselves and get out of it. We have to come out vindicated.
Stephanie Flynt McEben: Selected suing or selective suing.
Michelle Bishop: Yeah, we have to get sued by somebody really, really big, and then we win, and we come out of it looking like “The Karate Kid,” you know what I’m saying?
Stephanie Flynt McEben: Fair enough, fair enough.
Michelle Bishop: Gotta give it, it’s gotta be like underdog vibes, and then we’re vindicated in the end.
Stephanie Flynt McEben: I love that.
Michelle Bishop: And then when they make a movie or a Netflix short series about us, we come out victorious in the end.
Stephanie Flynt McEben: I love that, National Disability TV.
Michelle Bishop: Oh, we should have a TV show. Jack, can we do a TV show?
Jack Rosen: Honestly, yes, I’m on board for that one.
Michelle Bishop: Oh, I really thought you were gonna say no.
Stephanie Flynt McEben: Yeah, me too.
Michelle Bishop: Caught the holiday spirit.
Jack Rosen: That one’s, I’m on board. The only condition is you get to be the one to pitch Marlena on that.
Stephanie Flynt McEben: Wait, who is the you?
Jack Rosen: I’d guess either of you.
Michelle Bishop: Not it.
Stephanie Flynt McEben: Oh, come on, Michelle.
Michelle Bishop: Nah, it’s Stephanie, I said not it.
Stephanie Flynt McEben: Yeah, but like remember when you guys pitched the documentary? Like you have a golden streak so far.
Michelle Bishop: Yeah, but I said not it, though. I feel like that’s the rules.
Stephanie Flynt: Fake news.
Michelle Bishop: Yeah, I did a preemptive not it, so that’d definitely be you.
Stephanie Flynt McEben: Fine, all right, I’ll be it.
Michelle Bishop: Show up with Nala.
Stephanie Flynt McEben: Oh, y’all can hear Nala’s collar jingling in the background?
Michelle Bishop: No, but that’s amazing. I was just thinking bring Nala into that meeting when you pitch the idea.
Stephanie Flynt McEben: Yep, there you go. I mean, I’ll just let Nala pitch the idea. I’ll put like a sticky note on her collar that says TV show with a question mark.
Michelle Bishop: I feel like that would work, actually.
Stephanie Flynt McEben: Yeah, low key. If anyone has any other ideas on how to pitch a TV show, please feel free to email podcast@ndrn.org.
Michelle Bishop: You’ve been really pushing that email pretty hard.
Stephanie Flynt McEben: Yeah, ’cause you know, we gotta let the people know how to contact us if they think we’re cool cats.
Michelle Bishop: Or if you also, you know, I’ve like topics for episodes that are actually about disability rights stuff.
Stephanie Flynt McEben: Yeah, that’s I guess a thing too, right? Because-
Jack Rosen: Or if you want to give NDRN money and want to make us look good in the process.
Stephanie Flynt McEben: Oh yeah, that reminds me.
Michelle Bishop: Do they know about the store? Do they know about the store, Jack? Have we told ’em about the store?
Stephanie Flynt McEben: I was gonna say. This reminds me today’s sponsor.
Michelle Bishop: Hello, if you haven’t finished your holiday shopping.
Stephanie Flynt McEben: Thank you, NDRN’s new merch store for sponsoring this episode. We’ve got lots of T-shirts, we’ve got some Nala merch. We’ve got a mug that says Protect, Advocate, and Caffeinate, which I desperately need to get. Y’all know that I, you know, need coffee on an IV drip.
Jack Rosen: Yes, and you can find our store at…somewhere. I’m trying to find it.
Stephanie Flynt McEben: Bonfire.
Jack Rosen: It’s at Bonfire.
Stephanie Flynt McEben: We’ll put a link in the show notes.
Jack Rosen: It’s something, it’s somewhere.
Michelle Bishop: We might have to edit this part. We might have to take this out and put in a clip of you sounding very confident about where to find our store.
Jack Rosen: Okay, it’s at bonfire.com/org national-disability-rights-network-inc-592333653.
Michelle Bishop: Is there a possibility of making a URL that redirects to that?
Stephanie Flynt McEben: Right.
Jack Rosen: It’ll be in the show notes.
Stephanie Flynt McEben: I was gonna say, yeah, that’s like a very intense URL.
Jack Rosen: And I’m only 70% certain I got the number of threes right.
Michelle Bishop: It didn’t sound that confident. What’s the name of the website that hosts the store?
Jack Rosen: It’s Bonfire. If you look up National Disability Rights Network on Bonfire, you’ll find us. Yeah, we have a Nala mug. We have a tote bag featuring Nala that says may contain treats. We have a shirt that says The Future is Accessible. We’ve sold a few of those. Oh, and my personal favorite, for our mobility aid users out there, we have one that says Don’t Make Me Roll Over Your Foot.
Stephanie Flynt McEben: We need a cane one.
Michelle Bishop: I have actually seen the Don’t Make Me Roll Over Your Foot one posted on TikTok.
Jack Rosen: Wait, really?
Michelle Bishop: Yeah.
Jack Rosen: Did you post it on TikTok?
Michelle Bishop: I never post on TikTok. I’m not trying to get roasted by children. Literally never posted on TikTok in my life. I think it might have been one of the P&As. I’ll find it, Jack, I’ll find it.
Jack Rosen: Okay.
Michelle Bishop: My bad.
Stephanie Flynt McEben: (Inaudible) In the tote bag.
Michelle Bishop: Should have sent it to you before. But if you haven’t finished your holiday shopping, you can still order from our new store at Bonfire, the single best Childish Gambino song ever released.
Stephanie Flynt McEben: Who’s that?
Michelle Bishop: Don’t hurt me like this, Stephanie.
Jack Rosen: That, oh, now I gotta think about what my favorite Childish Gambino song is.
Michelle Bishop: Definitely “Bonfire.”
Jack Rosen: “Camp” is his best album.
Michelle Bishop: “Camp” is his best album for sure.
Stephanie Flynt McEben: You guys keep me young, as Regina George’s mom says.
Michelle Bishop: That’s hilarious.
Jack Rosen: Stephanie, this album came out like 12 years ago.
Michelle Bishop: Yeah, this is not a new album.
Stephanie Flynt McEben: Oh.
Michelle Bishop: I know, Stephanie, Stephanie.
Stephanie Flynt McEben: I just, I don’t even know who Childish Gambino is.
Michelle Bishop: Donald Glover.
Stephanie Flynt McEben: Who’s that?
Stephanie Flynt McEben: Okay.
Jack Rosen: He was in “Community.”
Stephanie Flynt McEben: What’s that?
Jack Rosen: He was in “30 Rock.”
Michelle Bishop: Stephanie.
Jack Rosen: He did “Atlanta.”
Stephanie Flynt McEben: Atlanta?
Michelle Bishop: The TV show.
Stephanie Flynt McEben: There’s a TV show called “Atlanta”?
Michelle Bishop: Stephanie.
Stephanie Flynt McEben: I watch “Live PD” and “The Golden Girls.” I should get credit for that.
Michelle Bishop: You know, if there’s a spectrum of television shows, “The Golden Girls” and “Atlanta” are shockingly at opposite ends of the spectrum and surprisingly similar.
Stephanie Flynt McEben: Yeah, in case you have a guess, Stephanie has really bad knowledge.
Michelle Bishop: I feel like anyone who listens to this podcast enough knows.
Stephanie Flynt McEben: Well, we have to make sure that people have a definitive answer to this.
Michelle Bishop: It’s good that you’re admitting it.
Stephanie Flynt McEben: I’m trying, I’m trying to be more honest with the people.
Jack Rosen: Stephanie, I just have a question about your pop culture knowledge.
Stephanie Flynt McEben: Oh gosh.
Jack Rosen: Since it’s been out half a year, Have you listened to “Brat”?
Stephanie Flynt McEben: Oh, no, I need to do that. That’s the Charli XCX album, right?
Jack Rosen: Yeah.
Michelle Bishop: I haven’t listened to it either, I’m gonna confess.
Jack Rosen: You guy’s missed “Brat Summer”
Michelle Bishop: I did, I missed “Brat Summer.”
Stephanie Flynt McEben: I know the like, I don’t know, there was some sort of “Brat” thing going around social media.
Michelle Bishop: My musical tastes are a little bit more sad girl autumn than they are “Brat Summer.”
Stephanie Flynt McEben: The, like Maggie Rogers and-
Michelle Bishop: I love Maggie Rogers, Stephanie.
Stephanie Flynt McEben: Yes.
Michelle Bishop: Why have we not talked about this before?
Stephanie Flynt McEben: I don’t know.
Michelle Bishop: Yes.
Stephanie Flynt McEben: We really should like swap playlists.
Michelle Bishop: I love Maggie Rogers, also just like “Folklore,” “Evermore” kind of vibes.
Stephanie Flynt McEben: Yes, I completely agree.
Michelle Bishop: Yes, yes. People think being a Swifty means you like dance around your house to “Shake It Off,” and it more often means lying face down on your bed crying to “Champagne Problems.”
Stephanie Flynt McEben: Basically. People don’t get it. Or like, crying because of, what is that song? Oh, “Nothing New,” goodness.
Michelle Bishop: Surprising amount of anxiety, depression, murder, and suicide in her music.
Stephanie Flynt McEben: Yeah, mm-hmm, fair enough.
Michelle Bishop: A truly shocking amount if you haven’t listened to the full catalog.
Stephanie Flynt McEben: Yeah, no, fair enough. I will say this, “Nothing New” makes me feel like really ancient whenever I listen to it, because like, I’ll go on the Hill, and there are all these like early 20 something staffers, and I’m like, “Oh my gosh.”
Michelle Bishop: I’m sorry for what I’m about to say to hurt your feelings, Stephanie, but when I went to “The Eras Tour,” at MetLife, night one, Phoebe Bridgers came out and they performed that song together.
Stephanie Flynt McEben: That’s not fair.
Michelle Bishop: It was amazing.
Stephanie Flynt McEben: I’m upset, what? I love Phoebe Bridgers, though.
Michelle Bishop: Well, Phoebe Bridgers was the opener for that show.
Stephanie Flynt McEben: I’m so sad.
Michelle Bishop: It was amazing, I’m sorry you weren’t there. You should have come.
Stephanie Flynt McEben: I’m sorry I wasn’t there.
Michelle Bishop: You and Nala should have been right there with us.
Stephanie Flynt McEben: Gosh, Nala just heard her name, and her little ears perked up.
Michelle Bishop: ‘Cause that’s my bestie.
Stephanie Flynt McEben: Mm-hmm.
Michelle Bishop: Sorry, Nala’s like, “That’s right. I should have been there.” Oh, can you see Nala with little friendship bracelets on her little paws?
Stephanie Flynt McEben: Oh my gosh, yes.
Michelle Bishop: Right?
Stephanie Flynt McEben: Like around her collar or something.
Michelle Bishop:: We could have dressed her up in a little themed outfit. They actually do make dog collars that look like big friendship bracelets.
Stephanie Flynt McEben: Wait, for real?
Michelle Bishop: In case anyone’s looking for a last minute holiday gift for Stephanie.
Stephanie Flynt McEben: Yes, we also take gifts, but we don’t take solicitations.
Michelle Bishop: So the second we started talking about Maggie Rogers and Taylor Swift, Jack just went on mute.
Stephanie Flynt McEben: Oh. Jack, we can talk about Chappell next. Wait, did that get him?
Michelle Bishop: He just went off mute as soon as you said that.
Jack Rosen: Look, I don’t know if I could talk about Chappell. I’m still sad about not getting to go to the tour.
Stephanie Flynt McEben: I feel this on a spiritual level. Oh yeah, if anybody wants to buy me and Jack Chappell Roan tickets.
Jack Rosen: Listeners, it’s really bad. Stephanie and I at one point talked about flying to Iowa to see her.
Stephanie Flynt McEben: Yeah, like, you know it’s bad.
Jack Rosen: And the problem was that we couldn’t get tickets, not that it was a terrible idea.
Stephanie Flynt McEben: Right.
Jack Rosen:: But the tickets sold out.
Michelle Bishop: I went to Europe for “The Eras Tour” twice, so you know I don’t think there’s anything outrageous about going to Iowa for a concert. I fully support this idea.
Stephanie Flynt McEben: Yeah, I just wanna see her so bad.
Jack Rosen: I know, and now I feel like it’s gonna be a whole different thing for the next album because she’s doing the country thing.
Stephanie Flynt McEben: I know.
Michelle Bishop: She’s doing a country album?
Jack Rosen: I think.
Michelle Bishop: Oh
Stephanie Flynt McEben: Yeah, we’ve gotten some teasers.
Michelle Bishop: It’s probably gonna be really good.
Stephanie Flynt McEben I could totally see that.
Michelle Bishop: I can see it.
Stephanie Flynt McEben I mean, it’s Chappell.
Michelle Bishop: So maybe the moral of this episode is that Chappell Roan needs to do a concert for us as a holiday gift.
Stephanie Flynt McEben Oh my gosh.
Michelle Bishop: If someone can just get this into her hands, please. Thank you.
Stephanie Flynt McEben I would, oh my gosh. I have the biggest smile on my face right now. I’m like imagining this, and like, my heart is so happy and full.
Jack Rosen: Chappell, come on, you know Tiny Desk? We have something similar called Tiny Conference Room where you perform in our conference room.
Stephanie Flynt McEben: Right, very tiny conference room, and we even have complimentary coffee.
Michelle Bishop: You could do like Tiny Accessible Desk, where we have those desks that can be raised or lowered for wheelchairs.
Stephanie Flynt McEben: Yes.
Michelle Bishop: We should start hosting Tiny Accessible Desk concerts. We’re definitely gonna get sued if we take that. We’re definitely gonna get sued if we do our own version of Tiny Desk concerts, right? That seems problematic.
Jack Rosen: That one might be pushing the line, but let’s see.
Stephanie Flynt McEben: Just apparently wanna get sued. ♪ We apparently want to get sued ♪ ♪ We apparently want to get sued ♪ ♪ We apparently want to get sued ♪ ♪ And we made it clear this episode ♪
Michelle Bishop: The number of times we told Stephanie she cannot sing Christmas carols on this episode.
Stephanie Flynt McEben: Hey, at least I didn’t do the 12 days of the P&As.
Michelle Bishop: Do not do it.
Jack Rosen: I was really hoping you had that ready for us.
Stephanie Flynt McEben: ♪ On the first day of Christmas ♪ ♪ NDRN gave to you ♪
Stephanie Flynt McEben: Oh, wow, y’all are actually listening. The people actually want this. I can’t remember what the first line was.
Michelle Bishop: I mean, it’s your moment. We both literally were just quiet, we were listening. We were gonna let you do your thing.
Stephanie Flynt McEben: I know, but like, y’all have been discouraging this since like day zero.
Michelle Bishop: And that’s because I’ve heard the lyrics and they weren’t great, but we were gonna let you do your thing.
Stephanie Flynt McEben: ♪ A membership organization ♪ ♪ On the second day of Christmas ♪ ♪ I need to find some words ♪
Jack Rosen: All right, maybe we can have this ready by next year’s Christmas.
Stephanie Flynt McEben: Yeah, no, that’s totally fair, that’s totally fair. I feel like at some point we should probably end the episode because, you know.
Michelle Bishop: Yeah.
Stephanie Flynt McEben: People might be annoyed with us. But we hope you enjoyed this fun Christmas special and getting to know us a little bit more, and yeah, we’ll be back with our regularly scheduled programming come January, am I right, guys?
Michelle Bishop: Wait, Stephanie, do you have a holiday joke?
Stephanie Flynt McEben: Oh, I have an encore joke.
Michelle Bishop: Okay, do it.
Stephanie Flynt McEben: All right, what do you get blind people for Christmas? There are listeners who probably have heard this if you’ve been an OG, longtime listener, but don’t ruin it for those of us who are new.
Michelle Bishop: And if not, we wanna remind you that Stephanie is blind and it’s okay for her to make blind jokes.
Stephanie Flynt McEben: Oh yeah, that’s a thing. I’m a blind person, so yeah. What y’all gonna get me for Christmas?
Jack Rosen: What are we gonna get you, Stephanie?
Stephanie Flynt McEben: Candy canes.
Jack Rosen: Oh my God.
Stephanie Flynt McEben: Blind people use candy canes.
Michelle Bishop: I asked for this.
Stephanie Flynt McEben: Yes, you did. It’s all right. Anyway, Jack, do you wanna tell the people where they can follow us?
Jack Rosen: Yes, you can follow us on Twitter, LinkedIn, Facebook, Instagram, Threads, Bluesky, YouTube, and the TikTok that we do not and will never use. I think they’re banning TikTok, so I finally outlasted you guys asking me to make TikToks.
Stephanie Flynt McEben: Okay, how many followers do we have on our TikTok? Before we go, do the people know?
Jack Rosen: I do not know if we have any.
Stephanie Flynt McEben: Okay, well, fair enough. Yeah, go follow us on TikTok so we have at least like two followers. Anyway, y’all, until next time.
Jack Rosen: And Stephanie, where can they email us?
Stephanie Flynt McEben: Oh yeah, I haven’t said that enough this episode, podcast@ndrn.org. That is P-O-D-C-A-S-T@N-D-R-N.O-R-G.
Michelle Bishop: Look at Stephanie taking the lead on this whole episode. I’m totally retiring after this, bye.
Stephanie Flynt McEben: Nope, nope, you’re not.
Michelle Bishop: No, I’m out, I’m out.
Stephanie Flynt McEben: Nope. Remember, you’re voter access and engagement manager, manager.
Michelle Bishop: It’s been fun, guys, oh, it’s been so lovely. I’ll be a listener in 2025.
Stephanie Flynt McEben: And you’ll continue.
Jack Rosen: You know, Stephanie, just yesterday, someone was telling me about an accessible audio editing software. I think you’ve got this from here.
Michelle Bishop: Oh, so are you gonna retire too, Jack?
Jack Rosen: Oh yeah, I’m retiring.
Stephanie Flynt McEben: Oh my God.
Michelle Bishop: All right.
Stephanie Flynt McEben: No.
Michelle Bishop: Stephanie, we’re so excited for you to have your own podcast.
Stephanie Flynt McEben: This is not the Stephanie Show, I object.
Michelle Bishop: Oh, we can call it the Stephanie Show and everything. I can’t wait to listen to the Stephanie show in 2025.
Stephanie Flynt McEben: Oh, that’s cute. Stephanie’s retiring if it becomes the Stephanie Show.
Michelle Bishop: It’s just gonna be Stephanie singing for you and making up jokes.
Stephanie Flynt McEben: ♪ On the first day of Christmas ♪
Stephanie Flynt McEben: Yeah, no, the people do not want that.
Michelle Bishop: You can’t even stop yourself.
Stephanie Flynt McEben: I know, but the people do not want that. We have to give the people what they want, and that is the pro host, that is Michelle, and that is me-ish, kind of. I don’t know, people probably think I’m a ding-dong, but anyway.
Michelle Bishop: So we just wanna say Happy Holidays to all of you, no matter which of the million holidays you celebrate between November and January, and the Stephanie show coming to you in 2025.
Stephanie Flynt McEben: No, NDRN is, or NDR is staying a thing. Anyway, until next time y’all, bye.
We're coming to you live on Election Day for a special episode of National Disability Radio. With surprise guests (even we don't know who they'll be yet!)
In celebration of NDEAM the pod squad is working extra hard! We interview the folks at the FAIR Program at Disability Rights Louisiana, and then we speak to Dr. Josie Badger.
Things are a bit upside down on this episode. Our producer, Jack Rosen, is one of the guests this time, so David Card is a guest host (he’s guesting as a host, Jack is guesting as a guest). They are joined by Monica Wiley (also a guest) and Michelle Bishop (still a host) to discuss “Accessing Democracy” a documentary short directed by Jack and staring Monica focused on voters with disabilities. The documentary was produced by NDRN and created in partnership with Disability Rights New York.
Register for the world premiere of Accessing Democracy: https://us06web.zoom.us/meeting/register/tZAuc-ugqzksGNBHggVvDOiyio-S29EWgca5#/registration
Full transcript available at: https://www.ndrn.org/resource/ndr-sep24/
Michelle Bishop:
I’m so sorry you didn’t get that part.
Jack Rosen:
I wish I did, but I mean, David Hutt would’ve made us censored anyway, so it’s fine and let’s just move on.
Jack Rosen:
We’re doing things very backwards this time, which is why I’m kicking us off. I’m actually the guest this week along with Monica. Michelle is the only permanent host present, and David Card is subbing in as a guest host because I don’t think I can interview myself, though if we do some more experimental podcasts in the future, maybe that’s something we’ll explore. With that, I guess I will throw it back to Michelle since I’m a guest and I’m not supposed to be doing the intro.
Michelle Bishop:
The only thing I heard in all of that is that Jack is not a host on the podcast.
Jack Rosen:
Damn it.
Michelle Bishop:
Victory is mine. All right, so this month we’re actually going to be talking about Accessing Democracy, a brand new short documentary that if NDRN does say so ourselves, is amazing and groundbreaking and about to change the world to make you cry all at the same time. With that said, our guests, would you like to introduce yourselves?
David Card:
Hi everyone. I’m David Card. I’m NDRN’s Deputy Executive Director for External Relations, which means I oversee our communications department. I am super excited to be a co-host today. I’ve been secretly very jealous of everybody who gets to be part of the podcast, so I feel like I’m the weekend host on the Today Show, who gets to fill in for one of the regular hosts during the week. This is really exciting for me.
Monica Wiley:
Thank you. It’s a pleasure to be here today. I am Monica Wiley, the Voter Engagement Specialist at the National Disability Rights Network in the voter department. I had the great pleasure of working on this project with Mr. Jack Rosen as we interviewed quite a few of amazing voters from our community. This project was something that was very, very important, very much needed, and also had some fun moments at times, but definitely a pleasure to be here and to talk about this today.
Jack Rosen:
I am Jack Rosen. Normally I am the producer and a co-host of National Disability Radio, but today I’m here as a guest. I served as director of Accessing Democracy. It was really a privilege to get to work on this project, and I’m glad that NDRN was willing to take the chance on a first-time filmmaker and invest in me and Monica going across the country to interview voters with disabilities.
David Card:
Could you tell us a little bit more about this project and what its message is?
Jack Rosen:
It’s a documentary short focused on voters in our community and the power of our votes and the issues that we wish those seeking office were addressing. Close to a year ago, we were trying to come up with ways to get our community excited about the upcoming presidential election. Marlene Sallo, our executive director, half-jokingly, suggested that we do a buddy comedy of me and Monica going around the country, interviewing the candidates running for president. We at first decided to actually pursue that. We reached out to all of the people running to be the next commander-in-chief.
Jack Rosen:
The truth of the matter is, we did not hear back from a single one. What we decided to do was instead focus more on the voters in our community because the voters in our community are rarely heard. We occasionally get a few news articles every cycle about these voters with disabilities went to their polling place and found out it was inaccessible or their absentee ballots were never sent out. We always hear about the barriers impacting people in our community, but we don’t hear what voters in our community want. We don’t have the media asking us, and we very rarely have those running for office actually take the time to develop a detailed disability platform. I mean, it’s so rare that our issues get addressed that it was newsworthy when a single question was asked about disability during the 2020 primary.
Jack Rosen:
We wanted to give folks in our community, in the disability community, a chance to say what they want, what their lives are like, what kind of barriers they encounter that could be given political solutions. While I don’t know if the next commander-in-chief can solve ableism at a societal level, they absolutely could make it easier for people with disabilities to get jobs, to have access to accessible and affordable housing, to have access to healthcare and to the service providers they need. We interviewed about a half dozen people across our community about just that, about what they want and what they need from the next commander-in-chief.
Michelle Bishop:
Monica, could you talk a little bit about what it was like working on this project?
Monica Wiley:
Absolutely, Michelle, and thank you for the question. Working on this project from a personal, I’ll speak for it from a personal and professional perspective. From a personal perspective, as a person with a disability that has been very involved in voter engagement work in the cross-disability community, it was very eye-opening in certain ways in terms of others with different types of disabilities that their disability has impacted their ability to be confident and wanting to do their civic duty, which is voting, helping to promote voting for our community. Just how society just uses our disability against us as someone or as individuals, that don’t know what we want from our leaders or that we’re not capable of being able to vote, of having the ability to exercise our voice, whether it be in voting or whether it be in advocacy.
Monica Wiley:
To hear firsthand in a one-on-one discussion, I called it a conversation, was what I called it when I was interviewing the different voters, people in the cross-disability community, because that’s what we were having, we were having a conversation about these challenges, about what we want to see from the next commander-in-chief, and furthermore, what we want to see from our elected officials period.
Monica Wiley:
The next commander-in-chief is going to need these leaders to be in support of the work that needs to take place in our community, the policies, the laws that need to be for the betterment of our community. If we don’t have elected officials on the local level and state level to work closely with the next commander-in-chief, then we would continue to have these roadblocks. Being able to speak with individuals up and down the East Coast about their needs, about the challenges that they have faced, especially some of those who were first-time voters when they voted in the last election and are looking forward to voting again in this election. The feeling that I experienced when hearing these individuals talk about their level of excitement for wanting to be involved in voting, it was just simply amazing, Michelle.
Monica Wiley:
I would highly encourage the media and others to really pay attention to what, because we do know what we want to see for the next commander-in-chief. We do know what we expect from these leaders. We are very, very aware of what we’re voting for, what to take place, and making sure that we have the accommodations to be able to vote. I hope that answers your question,
Michelle Bishop:
Ew, David, if you want to be a co-host, you have to ask a question. Failing.
David Card:
Sorry, I was muted.
Monica Wiley:
I was like, “Is David supposed to go?”
Michelle Bishop:
He is. He is and he just ghosted us.
David Card:
I know. I’m sorry. This is my first time.
Michelle Bishop:
Excuses.
David Card:
Okay. Monica, what did you learn about voters in our community? Was there anything that surprised you as you talked to voters?
Monica Wiley:
Actually, there was. There was some things that surprised me from voters. One was, and I know that we are in the process of trying to expand technology and making sure that we have better access digitally, but I was surprised at how there are voters who are deaf and blind still encounter some of these challenges even when the HAVA Act says that you should have at least one voting machine that is accessible. As a person who’s not deaf and blind, but is a person that has a physical disability, I couldn’t necessarily connect with that challenge because that wasn’t my challenge. I would have thought that we would have done better with this, especially since I’ve been involved in organizing around voting and voting access for quite some time.
Monica Wiley:
To still hear and witness from these individuals that we have spoken to about their lack of access to the voter ballot, was still pretty interesting. I would say that was probably, for me, the biggest thing that I learned in terms of access. We talk about everyone having the right to vote and having access to the voter ballot, but then yet there’s still these various challenges as it pertains to a particular group within the cross-disability community. I was pretty perturbed by that piece.
Monica Wiley:
I am trying to think, because there were so many great individuals that we spoke with that had different types of disabilities. I would just say, David, that when you look at this short film, this short documentary, you will definitely see a reflection of the cross-disability community of those with different types of disabilities, their advocacy, their passion behind wanting to vote in this election, and their desire to really make an impact, and also make sure that society knows that they know what they’re doing, they are educated voters, and that they will be at the voter ballot in this election cycle. I hope that answers your question.
Jack Rosen:
I just want to add on to that, that one thing that really struck me was we had the chance to interview this gentleman, Jim Piat, and he is a retiree, and he grew up in what you could simply call the bad old days before the ADA, before HAVA, I mean before the disability rights movement really. I mean, he was even at the signing of the ADA. What struck me was some of the things he described. I mean, you hear about it when you talk to elders in our community. You read about it. You see it in films like Crip Camp. It was just striking to me when he described what things used to be like.
Jack Rosen:
I mean, he grew up going to school in a segregated environment. He tells this story in the movie that we made where he describes the first time he voted, he had to do it from a car because the polling place, forget having an accessible machine, he couldn’t get into the polling place. He couldn’t even mark the ballot himself because they didn’t have the technology at the time. He had to tell someone who he wanted to vote for. It really reminded me why we need politicians to promote change for our community because 50 years ago, that was the baseline. In spite of the progress we made, people like Jim and all of the voters we spoke to, are still not satisfied. They want more. They want and deserve a society that really meets the needs of people with disabilities.
Michelle Bishop:
This is amazing. Y’all know I get hype about elections, so I’m into it, but it’s also entirely too serious for this podcast. Do you all have any funny stories from filming?
Monica Wiley:
Actually, I do. We were filming in an area in North Carolina. It was an individual we were considering for the documentary. This person had, I would say, at least 15 cats. I may be exaggerating a tad bit, but there was quite a few cats. I get very scared and nervous around certain animals. While we were filming, the respective voter said, “Oh, they won’t come near you because they’re not familiar with you. They’ll probably just stay away and some of them will hide.” Well, there were two of them, maybe even three, that did not pay attention to those instructions or was just wanting to do their own thing.
Monica Wiley:
While I was about to ask the first question, the cat jumped up on the couch and I think, I believe I may have screamed, I may have screamed. Jack had to say, “We got to cut. We got to cut.” Of course we had to because at that point I was out of focus, I didn’t know how to handle it, and it was just a little bit scary for me. The cat was getting very close, and I would shy away a little bit. It was funny. I think the second time was, I think the cat actually, I’m not sure if the cat actually got on my leg but was close to my leg and so I had to keep my composure. I think the first one was me, actually, I think I did scream. I think I screamed a little bit. After we finished filming, I think we had to do it maybe two or three times. I can’t remember, Jack.
Monica Wiley:
For me, that was actually kind of funny now that I think about it and once we left. I actually screamed as if I was being attacked and I wasn’t. I was not used to cats and especially animals jumping up on the couch. I was trying to make sure that I was doing my job and being professional, and I was very focused. The cat took me off of focus. Yeah, I actually screamed. To me, that was funny.
Jack Rosen:
Oh my God. Yeah. I think with maybe one exception, every single voter we interviewed had cats. Yeah, going into this, I did not know Monica was afraid of cats. I never really thought to message people, “Hey, if you have cats, if you can get them to go in another room,” or whatever. Just by the end of it, I was just sending everyone, “If you have any pets, please, please try to put them in another room,” because it was literally every person had pets. You’d think at a certain point, statistically someone wouldn’t, but they all did. It was always a challenge because they would also try to jump on the cameras, on the lights. There are a lot of cords. A filming environment is barely a safe place for a person to try to walk around. There are a lot of tripping hazards, but then you add cats into the mix and every shoot was a bit of a challenge.
Monica Wiley:
Yes, I second that. Yeah, they wanted their spotlight. They wanted their five seconds of fame as well. To a certain extent, I can’t quite blame them, but yes, they were everywhere. They were on the cords, near the cords, but they would just jump around. To Jack’s point, just about everyone had a cat. Yes, I think the funny part was when I screamed. I think the other funny part was when one of the cats was actually behind me in the actual filming, and I believe we had to cut again because the cat was moving around and that type of thing. Yes, those were the funny moments.
Michelle Bishop:
Do we have enough footage for a blooper reel of Monica being attacked by house pets?
Jack Rosen:
I’m going to need to look back in the footage. We might have to put that out.
Michelle Bishop:
Give it some consideration. Just something to think about.
David Card:
I agree. As a cat lady, I would appreciate a blooper reel of cats.
Monica Wiley:
You know what, David? At times I thought about you, at times.
David Card:
Jack, you guys are premiering the film soon?
Jack Rosen:
Yes. October 10th at 3:00 P.M. Eastern Time. We’re going to be doing the virtual world premiere for Accessing Democracy. I’m going to put a link in the show notes. You can also find it under the events tab on the NDRN website. Be sure to register for that. Spots in our Zoom are filling up pretty quickly for that.
Jack Rosen:
After we show the film, we’re going to be doing a panel featuring Monica, myself, and hopefully a few special guests talking about how this film came together, what we learned in the process, why we think it’s so important for politicians and those who want to be in positions of power to listen to our community, and answering any questions that attendees have. Please be sure to register for that.
Jack Rosen:
You can also catch Accessing Democracy at a couple of film festivals. We’re going to be at the Utopia Film Festival that is in Greenbelt, Maryland. It takes place October 19th to the 21st. If you are a DMV local, be sure to buy a ticket and come out to that. We were also accepted to International Social Change Festival. We’re waiting back to get a little more info on how you can view the film through that festival, but be sure to check those both out. If you are a organization interested in organizing a screening, please reach out to me at jack.rosen@ndrn.org.
Michelle Bishop:
I see. Okay. The special guests for the premiere panel are supposed to be people who are actually related to the film. I didn’t know that. I’m going to go ahead and not send you the list, Jack, of special guests that I was going to recommend. Hold on, let me get it out. My list was Kendrick Lamar performing Not Like Us, or Taylor Swift and Travis Kelce. Don’t take my word on that. I don’t think those people are coming to the premiere. Otherwise, it should be amazing and we hope to see all of you there.
Jack Rosen:
We’re not saying they won’t be there, we’re just not saying they will. Show up. You never know.
Michelle Bishop:
You never know. You never know who the surprise guest might be. Y’all, thank you so much for giving us your time today. This was really fantastic. I’m so excited for the premiere. I’m excited for the premiere, and I’ve actually already seen the film, so you know it’s that good. All of you should come check it out. Definitely if you’re in the area, come see us at some film festivals because that’s really cool. To close this out today, I don’t actually know where half of the podcast team are, and Stephanie usually tells us a joke, like a bad, I don’t want to say a bad joke, but a bad joke to close this out. David, our special guest host, do you have a joke for us?
David Card:
Oh, geez. I think any joke I would tell would end up with a visit to HR, so I’m going to decline.
Michelle Bishop:
Oh wait, I have a joke and it’s on theme. It’s on theme from the interview. Okay, you guys ready? Okay, so a cat walks into a, see it’s a cat, so it’s on theme, a cat walks into a library and goes right up to the front desk of the librarian and says, “I would like some tuna fish, please.” The librarian’s like, “You’re in a library?” The cat says Michelle whispers “Oh, I’m so sorry. Forgive me. I would like some tuna fish, please.”
Monica Wiley:
Oh my God.
Jack Rosen:
And you boo Stephanie after every single one of her jokes.
Michelle Bishop:
That joke is hilarious. He whispered because it’s a library. That joke is funny. That joke is funny. Stephanie is somewhere laughing and she doesn’t even know why.
Jack Rosen:
Oh my God. All right folks, as always, you can follow us on Twitter, Instagram, LinkedIn, Facebook, Threads. You can follow the TikTok we don’t use. You can visit us at ndrn.org and you can email the podcast at podcast@ndrn.org. Until next time, folks.
Paralympic medalist and World Games record holder Sandy Hanebrink joins us to talk about her journey from St. Louis to the 1996 games in Atlanta. We discuss how the treatment of Paralympic athletes has progressed and where more investment needs to be made in athletes with disabilities.
You can find Sandy at: https://www.linkedin.com/in/sandy-hanebrink-otr-l-24432029
To find out more about the Carvan for Disability Justice and Freedom: https://thedisabilitycaravan.com
Full transcript available at:
Michelle Bishop:
Oh, God. Okay. Are we ready, Jack?
Jack Rosen:
Ready as we’ll ever be.
Michelle Bishop:
Oh, that’s scary and not at all comforting. Laughs Okay, give me a sec.
Jack Rosen:
Today we’re sitting down with Sandy Hanebrink, who is executive director of Touch the Future. She’s a occupational therapist and has worked with the Neuro-Abilities Advisory Committee for the United Nations G3ict, which is under the Convention for the Rights of Persons with Disabilities. She’s an accessibility expert and she is also a Paralympian.
Jack Rosen:
Sandy, do you want to introduce yourself?
Sandy Hanebrink:
Hey, it’s great to be here with you guys. I think you pretty much covered it, Jack. I am Sandy Hanebrink, I am all those things he said, and I’m just happy to be here with you guys today.
Michelle Bishop:
Sandy, thank you so much. We’re excited to have you here. Actually, you have such an amazing list of credentials I’ve now thought of like five different podcast episodes we could interview you for on different topics, but this one is actually our Olympic special, so I was wondering if you could start by telling us a little bit about your history with the Paralympics and how you got involved.
Sandy Hanebrink:
So actually I got involved back in the glory days in the ’80s when rehab was kind of exploding and custom equipment and things were exploding. And I was a patient at St. Mary’s Rehab in St. Louis and was introduced to an adaptive sports program at the Jewish Community Center Association. It was an adaptive fitness program that had racquetball and whatever type that, and that was my first introduction to some of the guys who were doing disabled sports. So I learned about wheelchair basketball and wheelchair tennis and racquetball during my time in that program and started competing with the local wheelchair sports program in St. Louis, as well as playing tennis. And so I got introduced because I was invited to be part of a development team for Team USA to the Pan American Games in Venezuela. And so we competed in Venezuela as part of the Team USA and got a gold medal in wheelchair basketball. The next year I played in the U.S. Open in the Quad A division for wheelchair tennis, and I beat the guys. So I kind of caught the tennis bug. And then I started learning more about different sports and competing in different events and trying different wheelchair sports events because St. Mary’s sponsored many wheelchair sports teams. So they had people doing road races and track and field, and they had a wheelchair softball team, of course wheelchair basketball, and then tennis.
Sandy Hanebrink:
So that’s where I got my start. And then after I went to occupational therapy school, I actually moved to South Carolina where my parents were. And part of what I did while I was going to school was start a wheelchair sports program and get involved with the regional wheelchair games, the state games that were happening, which was then called the Southeastern Wheelchair Games. And that’s when I started trying different sports and did field events and competed in swimming. I went on to win the National Wheelchair Athletic Association is what it was called at the time, the female athlete of the year. Got invited out to Paralympic training camps, which at that time swimming and field were out at Sacramento State where they were doing just at the infancy… Rory Cooper, who’s at University of Pittsburgh, had just started the research into elite athleticism for Paralympians. And so part of those training camps, we were part of some of the initial studies on what form and technique and endurance and oxygen capacity of people with paralysis and different disabilities and things like that and how it impacted things. So kind of in the infancy of what is now what I call the modern Paralympics.
Sandy Hanebrink:
And then I competed in the World Games for swimming and field events and got silver medal at swimming in Worlds, continued to compete at national level. I actually still have the national records for shot put discus and javelin, and a couple of swimming events which will be forever because nationally we used to do yards and not meters, and now all Paralympic events are meters in the U.S. as well, so those will never go away. So that’s pretty exciting. And then because of my qualifying in attending the Paralympic sports camps, I made Team USA, competed in the trials, and then actually made the team for Atlanta Paralympics in ’96 for both field and swimming. But unfortunately when they restructured the games, they didn’t have all the classifications and they combined like I’m an incomplete quadriplegic, so my class was… All the quadriplegic females were lumped together with two different classes of paraplegics. So I could have done prelims, but there was no way I was going to make it to finals competing against people two classes ahead of me. So I competed in swimming and got a bronze medal at the Atlanta Paralympic Games, and then continued to compete for a while until that life thing called work happened and then started working. And then I did more with coaching, youth development programs, and wheelchair sports programs, and hosting events.
Michelle Bishop:
Sandy, first and most importantly, you’re from St. Louis? Because I’m from St. Louis, and I see now why our producer Jack did not mention that to me before we started filming this episode so that I didn’t spend the entire episode talking to you about toasted ravioli, which is-
Sandy Hanebrink:
Exactly
Michelle Bishop:
Right?
Sandy Hanebrink:
St. Louis pizza and toasted rav. You got to have it.
Michelle Bishop:
Right? We could do a whole episode on that. We should. We should do a St. Louis episode. We can go, we can record there live, and we’ll do it from an Imo’s. But sorry, all that aside, I mean congratulations. Your career sounds amazing and I can’t believe you’re an actual Olympic medalist. Like that blows my mind, and thank you just for representing our country at the Paralympics. Sorry, the Olympics make me really patriotic in a way that usually only elections can. But that’s an incredible story, just thank you for joining us. And I think Jack had another question for you.
Jack Rosen:
Sandy, so before we started this interview you were also talking about some of the challenges you faced when you were involved in the Paralympics, that they didn’t really invest in their athletes at the time. Do you want to talk about that a little and how things have changed?
Sandy Hanebrink:
Yeah, I think it’s kind of the evolution of disabled sports and Paralympic sport was back in the ’80s when you started seeing more and more countries participating in the Paralympics. You saw the rehab centers as another way to improve the quality of life of people with disabilities, sponsoring adaptive sports programs and Paralympic competitive teams. You saw leagues and stuff spreading across the country. But as an individual who’s competing back then, you were on your own to fundraise for all your equipment and training and that unless you happen to be part of one of these few wheelchair sports programs that existed out there, and they maybe had some team chairs. Or like some of my first equipment, my throwing chair actually, we made, I had a tool and die shop in town make for me.
Sandy Hanebrink:
And a lot of the equipment was evolving from where wheelchairs were now custom for every day. My first wheelchair when I first became paralyzed was an ENJ folding chair. And then by getting involved in the adaptive sports program that I talked about, I was introduced to custom chairs and sports chairs. And back then our everyday chair was also our basketball chair. Very few people had a piece of equipment for different sports, other than racing. That’s when the Eagle Sports Chairs had evolved with, at that time was still four wheel racing chairs, and just starting with the three wheel racing chairs that were much shorter and not as aerodynamic and not as much technology into it and innovations and engineering that we see today where BMW even makes custom molded wheelchairs for our Paralympic racers and stuff. But in the beginning you funded yourself, so sometimes the best athletes didn’t go, but the athletes who could fundraise or had a program backing them got to go.
Sandy Hanebrink:
When you made a national team, it’s much like Paralympics now and the Olympics where the national team coach and support staff are named. But like in gymnastics we were talking about earlier, you’ll see there’s the head coach but then you see the other coaches for the athletes are there. The athletes don’t have to just listen to the head coach that doesn’t really know them and things like that. Well when I went to Worlds with swimming, I didn’t know the coach or the team leaders and so they would make tips and stuff, but you’re kind of on your own to do your training and be prepared because you didn’t train with… The teams were named and you left, you didn’t have time to practice together and train like they do now. You had a couple weeks kind of thing. And again, it was like you had to fundraise. So I would hold fundraising events and sell t-shirts and do things like that to raise the money to be able to go to competitions and then to go to the Paralympics and that you had to buy your own uniforms and everything. There was fees and stuff, and you actually contributed to support the coaches and team leaders that you didn’t know.
Sandy Hanebrink:
Well, that changed after the Atlanta Games and the lawsuits that went through that changed to where the USOC now is the U.S. Olympic and Paralympic. And so you started seeing the evolution of more camps and stuff at the USOC and that, and now where there are resident athletes, and wheelchair athletes or other disabled athletes now are also professional athletes just like our peer Olympians. And at the last Olympics for the first time the Paralympians receive the same financial compensation for medal counts. The game sites, if a country hosts the Olympics, they have to host the Paralympics. There’s been a whole evolution because that wasn’t always the case. And then the medals and the clothes and the regalia and stuff that, even at the Atlanta Olympic Games the Paralympians we didn’t get anything that was even comparable. But now Team USA is Team USA, Olympic and Paralympian, which is a beautiful thing.
Sandy Hanebrink:
But with those changes it’s been a huge improvement for elite athletes. But with everything there’s a yin and a yang. It seems like some of the developmental programs aren’t there that were once there, and some of the state games and regional games you don’t see as many of that I’m aware of. I know in our area that there once were, and the size of the games aren’t as big. Because at the state games it was a combination of recreational, emerging and elite athletes because that’s where you learned about the different sports and you kind of learned techniques and strategies, and you learned about the national team and how to be a part of national teams. You learned about Paralympic trials and classification and all the different components that go with Paralympic sports.
Michelle Bishop:
It’s fascinating to me just how much it’s evolved from what you’ve described. It’s just the Paralympics have come so far, it’s really incredible, in a really a fairly short period of time. I mean what you’re describing was not that long ago, but it strikes me that you talked about how state and regional games seem to be on the decline, and I’m wondering if you have thoughts about how we could get more disabled youth involved in sports?
Sandy Hanebrink:
Yeah, I think it’s critical to start… We’re starting to see more and more facilities and infrastructure in place since the ADA, of course it’s been 34 years and we’re just now seeing adaptive playgrounds and access, better access to gyms and training facilities like fitness clubs, tracks, being able to park and have a route to a track and things like that. You’re seeing more and more in the media. Some of the national governing bodies are much more advanced and inclusive than others. Like local swim meets, if they’re part of U.S. Swimming, they can compete at their neighborhood swim club. Individual sports it’s easy to do, but then you’re always competing alongside your non-disabled peers, but against the clock. It’s still critical to have those competitions where you’re in a heat with people with your own classification and that.
Sandy Hanebrink:
So I think some of the change happened just with the changes in our healthcare paradigms and rehab and how long people are part of rehab facilities in order to be in that community and engaged. Certainly major rehab centers like Lakeshore Foundation is also a Paralympic training site and research center, so there’s ongoing program there. But then in my local community, we used to have wheelchair sports teams for track and field and basketball and tennis, and they kind of went away and now they’re starting to come back. It’s that wax and wane. And then when the Paralympics came under the US Olympic Paralympic, now it’s about elite sport and there’s all these feeder systems from Little League and local recreation and high school and colleges and professional races and things like that that are already in the mix for Olympians. And those individual sports like road racing, hand cycling, swimming, tennis are in that mix, but wheelchair basketball and softball and some of the team sports, sitting volleyball and that, those have to be unique leagues, right? Because those are only people with disability sports.
Sandy Hanebrink:
And so the USOC, Olympic Paralympic organization is about elite athleticism and they’re not… And they do the youth development just like they do for Olympics and that, but the people who compete in those development programs are already involved in recreational level and competitive club teams and things like that. And we just haven’t gotten there yet with Paralympics. A lot of focus was on our disabled veterans with the Paralympics because, let’s face it, we have young, strong, athletic people who thankfully were there for serving our country now with disabilities and were easy to integrate into programs. And I think the focus went there and the balance of continuing youth programming and adult community program kind of slacked off a little. Then there was a resurgence of trying to do programming and build Paralympic sports clubs, and I think some focus is there.
Sandy Hanebrink:
But really how I got involved was we said, “Hey, we don’t have this and we want to do this”. And we found, like in St. Louis, my uncle worked at Bishop DuBourg High School and they have a big parking lot. So I went to them and said, “Hey, can we paint a wheelchair softball field in your parking lot?” And that’s how we got a wheelchair softball team. In Mauldin here in South Carolina there was a Miracle League field and we got the city to make the outfield bigger so that it could accommodate wheelchair softball. And so now they just had a tournament last month that I attended to watch with teams from four different states. But the sustainability of trying to get more people into the program was what I was hearing from all of the teams, even the ones that came from rehab centers. And it’s like, “How do we get the younger people engaged?” And I think part of that’s going to have to start with it’s time for the high schools and junior high schools that have athletic teams to have them. It’s time for local rec centers to partner with the whole area in order to have the numbers they need for teams and to develop those feeder programs. And a lot of it still comes from people with disabilities just making that ask and forming the teams and keeping things going.
Stephanie Flynt McEben:
Thank you so, so much Sandy. I really appreciate. I know that we all really appreciate you discussing your lived experiences and participating in the Paralympics, and also talking about different ways that we can get today’s youth engaged in disabled sports. I know for me personally I did benefit from participating in disabled sports growing up. I was able to play soccer, I was able to participate on a swim team, and so participating in those things really does help in terms of helping with youth develop social skills and competency skills and leadership skills and various transferable skills and character development that can transfer into adulthood. And so I just wanted to know if you have any closing thoughts that you’d like to share with our listeners, any final thoughts that you have?
Sandy Hanebrink:
Yeah. I think for me I was an active athlete before I became disabled, and so being involved in disabled sports was all about what I can do, not what I can’t do. It was all about setting goals and pushing the limits and being a part of a team again. It was a way to achieve and to push things beyond what you thought you could ever do. I know like with the program we did in South Carolina, youth program… That was South Carolina and North Carolina we actually combined two states and we do some practices in South Carolina and some practices in North Carolina, and then we’d practice separately and that to make it happen. But it evolved into a Paralympic sports club. And the youth that started at four or five, six years old, some in their teens went on to college, they have families, they’re working. And when you compare it to statistically the same things that happen for youth who compete in non-disabled sports, the same benefits happen for youth in disabled sports. You develop those life skills and you’re successful and productive members of the community and you give back to the community.
Sandy Hanebrink:
And what I really love about the Paralympic movement is everybody kind of pays it forward. Like I’ve passed on my equipment to new athletes so that they could try things and get involved, other people have done that for me. People share their strategies. If my equipment broke, I’d actually had other athletes give me their equipment to use and I was competing against them. So it’s just a whole community dynamic, and to see from where we came in the ’80s where things were starting to boom with the evolution of sporting technologies, the changes in classification systems, the growth of Paralympic movement across the world to where it is today as considered equal athletes to our peer Olympians is quite amazing. The TV time, it’s part of everyday life of everyone, not just people with disabilities. Disabled athletes are recognized by the general public. It’s just the huge opportunities, and I just think it’s critical that youth sports and recreational sports for adults with disabilities be available so that we can continue to grow our teams for the Paralympics, but more importantly that we create those opportunities and those life skills for people with disabilities that should be available just like our non-disabled peers have.
Jack Rosen:
Well Sandy, thank you so much for taking the time to speak with us today. Where can the people find you? Do you have any social media or anything you’d like to promote?
Sandy Hanebrink:
Sure. Right now I’m actually part of the Caravan for Disability Freedom and Justice. So if you go to the Caravan for Disability Freedom and Justice 2024, we’re on Facebook, or The Disability Caravan. We’re traveling around the country celebrating people with disabilities, the history of people with disabilities, the resources and stuff today, and working towards the future. You can also get me at Touch the Future, we’re on Facebook. Or you can find me personally at Sandy Hanebrink on LinkedIn or Facebook tend to be the ones I’m on most. But I appreciate the opportunity and I’m just excited to be a part of it and really celebrate the growth of Disabled Sports and the Paralympic movement to where it is, this amazing competitive professional movement that it is today.
Jack Rosen:
And you can find those links in the show notes. Thank you so much for joining us today, Sandy.
Michelle Bishop:
Wow, y’all. Thanks so much to Sandy. It was really interesting hearing just how far things have come in terms of the Paralympics from where we started up through this year. And if you haven’t seen the little mascot for the Paralympics, it’s so cute. It’s that red hat that was the mascot for the Olympics, but he has a prosthetic leg. It’s super cute, you should check it out. Okay. Also, in honor of the Paralympics in Paris, Stephanie, I believe you have an on topic joke for us this month.
Stephanie Flynt McEben:
Of course I do, except it’s more of a question. And it’s something that I feel like people asked in 1982, but I wanted to know if anybody’s refrigerator is running? Get it? Because of the Olympics.
Michelle Bishop:
Oh, no.
Stephanie Flynt McEben:
Are there cricket noises that we can insert?
Michelle Bishop:
What worries me about that joke was not that I didn’t get where you were going, but that it’s an election year and I immediately took it as, “Is your refrigerator running for office?”
Stephanie Flynt McEben:
A frozen legislator? Oh, no.
Michelle Bishop:
It scares me when we’re too in sync, Stephanie, and it should scare everybody else.
Stephanie Flynt McEben:
Yeah, it’s fine. Well, hopefully you have been able to catch the end of this episode and my joke and all the things.
Michelle Bishop:
Jack, please tell the people where they can find us on social media and save us from this episode.
Jack Rosen:
As always, you can follow us on LinkedIn, Twitter, Instagram, Facebook, and Threads. And you can reach out to us at podcast@ndrn.org. Untill next time folks –
Stephanie Flynt McEben:
What about TikTok?
Michelle Bishop:
She really snuck, “What about TikTok?” in there.
Jack Rosen:
Was that what you were yelling?
Stephanie Flynt McEben:
Yes.
Michelle Bishop:
Yeah.
Amy Scherer joins us for her fourth appearance on the pod to discuss her work covering the US Olympic Gymnastics trials, and the accessibility challenges she’s faced both at the events themselves and while traveling for them.
Check out Amy’s coverage at: https://www.intlgymnast.com/
Full transcript available at: https://www.ndrn.org/resource/ndr-july24/
Stephanie Flynt:
Do I just start?
Jack Rosen:
Yeah.
Stephanie Flynt:
Yeah. Well, we’ve got to be up. Hold on, well. Aghhhhhhh. I almost fell over Nala.
Intro Music Plays
Jack Rosen:
All right. Well, our podcast team has been decimated by meetings and migraines and everything else. So it’s just me and Raquel here to kick us off today. Guess what, Michelle? I’m doing the intro this time. So I guess I am a host. Raquel, do you want to tell the folks who we have on today?
Raquel Rosa:
Thanks, Jack. Today we are going to be joined by Amy Scherer, one of NDRN’s dynamite attorneys. She focuses on supporting the CAP program, or the client assistance program. She’s going to be talking to us today about a recent trip she took to Minneapolis where she was fortunate enough to see the gymnastics Olympic trials. Take it away, Amy.
Amy Scherer:
Wow. Raquel, thanks for such a kind introduction and I’m really glad to be on here today to talk a little bit about my experience. As Raquel said, my day job is as a staff attorney at NDRN, focusing on CAP, or client assistance program, VR related employment issues.
And I just happen to have a little side job that is also quite fun and I feel lucky to be able to do it. Maybe something that not everybody gets to do every day, but I essentially work as a freelance writer for International Gymnast Media. It used to be International Gymnastics Magazine, but as many things have happened over the last couple of years through the pandemic and everything, it’s now essentially a website, but it is the main media that covers international gymnastics, and it’s been around since 1956. So it’s really great to be able to be a part of that organization.
And the gentleman that runs the website and was a publisher of the magazine, I actually had a chance to meet him when I was 10 years old and just started getting involved in the sport and really fell in love with the 1984 Olympics when Mary Lou Retton won for the United States and also the men’s team for the US won the gold medal there. So that was sort of my introduction to the sport, and I was able to meet Paul Ziert, the publisher, and that’s where our relationship began, which led to my ability to work there many years later. I never thought as a child that literally 40 years later I’d be working for that organization, but it all worked out that way.
And the job, it’s interesting because I don’t think it’s that common even in 2024 for members of the press to be wheelchair users or to have visible physical disabilities. So my primary job with International Gymnast is to cover the NCAA season, which is separate than the Olympic season. These are individuals obviously who are in college, have scholarships, and there’s an entire NCAA season just like there would be for football or basketball. And I typically write a column during the season each week and then get a chance to go to attend the NCAA national championship at the end of the year. So that’s a live event, and involves going to the competition and writing about it while it’s happening, so similar to live chat, and then also going to press conferences after that.
So when I first started doing this, which was probably back in 2016 when I started to do the formal coverage of NCAA, they didn’t even have a place for a person in wheelchair to sit in the press section. There were actually five steps up there to even get to the platform where the media was sitting. And so here I just sat in another section and was not able to be with everyone else who was reporting on the competition. But actually, and I have to give credit to my friend Jessica Obern, who was there, and she was even more incensed than I was about what had happened. And she wrote a scathing letter to the head of the media for NCAA gymnastics and just said it was inappropriate and that it needed to be set up differently in order for me to be able to participate.
And lo and behold, they did respond to that very well. The next year there was actually a section on the press application that said, “Do you need wheelchair seating? Check this box.” And they really worked with me from that point on to try to make sure that I had a good place to sit and that I could see well and reach the table and reach the laptop and everything that was involved in reporting on that competition.
So it went well for a number of years. I have to say last year there was a change in the leadership so I wasn’t working with the same person. And even though there were many, many emails exchanged in the months prior to this year’s competition in terms of what I needed in order to be able to see and to be able to reach the table and everything, I got there and the table was about 15 feet tall and I was not able to see over the row of people in front of me.
So obviously that was a major issue, and it became a pretty significant thing because we found out about it just a couple hours before the competition. So we were trying to figure out what to do, and I was pretty frustrated because it’s not like this was a surprise. There were lots of conversations about it. The guy who was just in charge did not seemingly have the power to make the changes that needed to be made, and they were extremely apologetic, but obviously that didn’t really impact me to do my job and to do what I needed to do.
So after some chaos and people running around, we were able to find a place for me where I could see the competition and do what I needed to do in terms of my job responsibilities. I do have to say that once I said that I was a staff attorney at the National Disability Rights Network and that I had knowledge about the ADA, that definitely got things moving a bit more. So tip to anyone listening, if you can drop that into a situation like this pretty quickly, that does tend to wake people up. But that’s the situation in terms of doing the job with the press.
I’ve just also been extremely happy, though, with the organization that I work with, International Gymnast Media. They never thought it was a big deal that I use a wheelchair, had never done gymnastics in my life, couldn’t tell you how to do a back handspring from a technical standpoint at all. But they just appreciated I guess my passion for the sport and my desire to learn more. And I was excited to be able to find a way to use the knowledge that I had in a productive way and to be able to put it to use. Rather than just sitting at home and watching videos on TV, what could I actually do that might contribute to the sport? And they just totally embraced that.
And again, this is starting back in the early nineties, so not something that was necessarily typical. Never really had any specific discussions with them about accommodations or anything specifically related to my disability. We just made it work. And I think it was a good example, too, of for a while there, most of the interaction I had was through email or through the phone, but then when we started to be able to meet at different competitions, spend more time together, have meals together, I think they got a better view of what my disability was and that there were more things to be considered beyond just the fact that I use a wheelchair.
My motor coordination is also somewhat limited, and so that affects typing, which was part of the job that I was doing. But again, as I got to know them better, that just all kind of happened naturally and it was never a big deal to figure out how to make it work. So I just think that’s a great example because sometimes people think when you request accommodations it has to be this really formal, adversarial thing, and sometimes that is needed, but other times, especially when it’s just more of a side job like this, it just happened more naturally as I got to know them and we just figured out what was going to work best for me. So I think that’s probably the end of the job part of the discussion.
Did anybody have, so the second part would be, again, the most recent trip, as Raquel mentioned, to the Olympic trials for gymnastics in Minneapolis, Minnesota. And I am not able to travel independently, so I was lucky enough to bring along Raquel, who was travel assistant extraordinaire. And we had never traveled together so I think it was a learning experience in a lot of ways for both of us, but it also just showed that things don’t always go as smoothly as you hope they’re going to.
One thing is I use a power chair most of the time in my day-to-day life and then [inaudible 00:10:20], but I have never taken a power chair on an airplane for a trip because there’s just so many variables there. And if one thing gets broken, then you get to the other end to start your trip when you land and you don’t have a working mobility device. So it does definitely make it easier or less likely for a chair to be broken if you have a manual chair, especially if you take all the pieces off of the chair, which is what I would recommend. So I’m assuming most people listening to this probably know this already, but you would want to take off the back cushions, the seat cushions, the footrest, basically anything that is detachable from the chair, I recommend that you take off and hopefully are able to put that into the overhead compartment for the plane.
That doesn’t guarantee that nothing’s going to get broken, because I did have a trip last year where all that was done and they broke the brakes on the chair, which might seem like a minor issue, but it really wasn’t minor in any way, shape, or form because since I couldn’t put the brakes on to keep the chair from moving, I couldn’t do a transfer independently. So it really did make the chair useless until they were able to fix the brakes, which took a couple of months in order for that to happen. So it really can be a huge issue when they damage the chair.
In this case, though, we did not have chair damage, so I was very happy that we made it to Minneapolis in one piece, but there were some major issues in terms of getting on the plane. Typically, if you need assistance as a result of a disability to get on the plane, you could indicate that on the plane reservation and say that you need help with transferring in order to get onto the seat.
And in most cases, there’s an aisle chair, which is a more narrow chair that is the width of the airplane aisle. So that allows a person who’s not able to walk to get to the seat of the airplane. And so that involves a couple of different transfers, though. You need to be able to get from your own personal wheelchair onto the aisle chair and then from the aisle chair onto the airplane seat. And all this was very well spelled out in the reservation, that I was going to need help to do that, and specifically that I would need lift assistance from the aisle chair, well, from my chair to the aisle chair and from the aisle chair to the seat.
But when Raquel and I got there, instead of having two people, which would be the standard procedure if you’re going to help do a lift assist onto a seat, there was only one person. And so they were basically asking me if I could help or basically independently do the transfers without lift assistance and I basically was like, “No, that’s really not going to be possible.” And Raquel stepped in and said, “I’ll be glad to help since there’s not [inaudible 00:13:29] here.” And so she assisted with that and helped me to safely and comfortably get onto the aisle chair and into the airplane.
But I still look back at that and I’m not sure what would’ve happened if Raquel had not been there. I may still be sitting on the aisle seat or the aisle chair. They clearly did not have a plan B, even though I had indicated that that was the type of assistance that was going to be needed. Raquel, did you want to add anything about that, or anything I missed?
Raquel Rosa:
No, I think you said everything exactly correctly. I think if I could just give advice out there, it’s when we’re supporting people physically, that even if we know them, especially if we don’t know them, but if we know them, no matter what, we should be asking people, “May I do this? Can you do that? Can we do this?”
So when Amy and I were together, and I think the airplane transfer was a really good illustration of that, there are a number of buckles and harnesses and everything attached to that aisle chair. So it’s, “Amy, may I put this around your legs? May I put this around your chest?” Or in taking it off, “May I unbuckle this? Can you put your arms around my neck and I will hold you underneath your knees so that I can support you in the transfer?”
I think that communication is critical not only for safety but also just for permission and consent. I don’t think anybody likes to be touched without knowing or without being okay with it. And so that’s something that I am very firmly an advocate of. And so I think Amy and I had a really good exchange when we were together, and I think that’s a really good example of where that communication was loud and clear.
Amy Scherer:
I think that’s such an excellent point. I’m so glad that you said that. And to that end, too, it happened on both ends of travel. So both when we were going DC to Minneapolis and then Minneapolis back to DC, there were issues with the transfers on the plane. Same issue in both, with not having the correct setup to provide the assistance that I requested and Raquel having to step in there.
And as she said, it did get quite uncomfortable on the second leg of the trip with the gentleman that was trying to attach the seat belts so that I would not fall out of the aisle chair, which is kind of an easy thing to do if you don’t have a lot of stable balance abilities, because the chair is so narrow there aren’t armrests. And so in a lot of ways the only thing that in my case was probably keeping me from falling over or out of the chair were the seat belts.
But to Raquel’s point, the gentleman was not very clear about what he was doing or where the seat belts were going to go, and I was just trying to make sure that I didn’t fall out of the chair. So it was kind of an uncomfortable exchange and not at all what Raquel was suggesting that happened. And I would say that’s the case even in any situation, not just the airlines, but even Raquel and I knew each other, we were friends, but we had never done, as I said before, a travel experience like this. So it was really important for me to hopefully communicate to her what I needed or what was going to be difficult or what was going to work or not work. And anybody who’s in that situation, even if it’s a person that you’re hiring as a personal care attendant that you really don’t know or that you haven’t developed a relationship with, I think communication about what is needed is such an important part of the whole thing.
So with that, the other major issue we had, it was a great hotel overall, and they had really good customer service. We had a really good experience with the hotel staff, the restaurant staff, even the bartender at the bar that we went to several times got to know us and knew we were coming and everything like that. But there was one major hotel issue, and that was with the hotel bathroom. And it was a roll in shower, which is what I typically request because the transfers to the tub onto the shower chair are much more difficult. I was really glad that the roll in shower was available, because again, sometimes that can happen too. You request a roll in shower and you get there and all they have is a tub. And that’s not necessarily, depending upon what your physical capabilities are, an easy transition to make.
But in this case, didn’t have to worry about that. We had the roll in shower, and it was really a great setup in a lot of ways, a nice big space, a nice threshold on the shower so that the water didn’t go everywhere, which can happen with a roll in shower setup. However, there were grab bars on the walls of the shower, which is fantastic, and there was a shower bench attached to the wall, which is also usually really good because that way it’s solid and stable and it’s not going to move and you know that it’s going to be there. You don’t have to sit there and request and hope that they bring a shower chair that you can sit on.
But where the shower bench was was not at all close to any of the grab bars that were on the wall. And initially Raquel and I looked at that and we were like, how could that be? How is that possible? They’re assuming that you’re going to be able to stand up from your chair and then sit on the bench without having to hold onto anything because there wasn’t anything to hold onto. So we were pretty perplexed, and we knew that that wasn’t going to be easy for me, to just go from the chair to the bench without any additional support, and we didn’t want to end up on the floor of the shower, so we had to really be creative and figure out a way to do it without having to do the transfer.
And we got really creative. I’ve never really tried to do it this way, but we decided that it was probably better if I just stayed in my chair rather than trying to transfer. Now, obviously a manual wheelchair is not designed to be prepared for a full shower. They actually have shower wheelchairs that are designed for that, but it was a situation we were in, so we had to make it work. We ended up taking everything off of the chair. Again, didn’t have a back support, didn’t have a cushion that I was sitting on. We just put a towel down, but we were trying to make sure that nothing that would be damaged by getting wet was on the chair. So basically took everything off that we possibly could and did it that way. Just literally rolled my chair into the shower because there was no way to get onto the bench.
And it worked. It definitely worked. It worked better than I think we thought it would, and everything did dry pretty quickly, so there was no damage done to the chair. But honestly, we should never really have been in that situation of having to make that decision because all they needed to do was have a grab bar on the wall nearest the bench and everything would’ve worked much better.
But that’s been my experience with hotel rooms in general. Even when you say accessible hotel room, request roll in shower, the setups are all very different. They may be specifically meeting the letter of the law, but clearly not looking at would this work from a functional standpoint if you’re not able to stand up or transfer independently. And so I would just throw that out there for those that might not know that. And I think that pretty much encapsulates the experience that I wanted to share, unless there are other questions or comments from Raquel.
Raquel Rosa:
I think the only thing I would add is the height of the bed and the fact that there’s only one bed. So it’s a good thing Amy and I are friends because we had a slumber party.
Amy Scherer:
Very true. And I think unfortunately that does seem, and didn’t mean to, definitely jump back in there, Raquel, if you want, but I think that has been pretty indicative of my experience. As soon as you request a wheelchair accessible hotel room, nine times out of 10, it is a one bed situation. And I’ve always found that really interesting because logically it would seem that maybe if you had a wheelchair accessible room, maybe you would have somebody with you that would be providing assistance and you are not necessarily romantically involved with that person.
So it is kind of that one bed does seem to be the standard and the beds do tend to be very high. I’m actually under five feet tall, so that creates a major issue for me. And it was a trend that didn’t really exist I’d say until about maybe 10 years ago, and then all of a sudden the hotel beds got much higher just across the board. So from a disability perspective, that may help some people because then they don’t have to try to get up from a lower position. But higher beds can also be a problem.
Raquel Rosa:
I think also with the height of the bed, so we were able to make it work, but just thinking about other folks who might need a portable Hoyer or something, some other physical transferring device, the width between the bed and the wall is typically not conducive to any of that. So I know we don’t have our hotel friends and architects listening to this, although they should be. I would really encourage folks to engage people with disabilities in assessing their proposed rooms when they are sketching them out and that they actually navigate the space when there’s a mock-up of the space being built.
It’s just, like I said, Amy and I were able to make it work. I’ve done lots of travel with lots of people with varying disabilities, and so I’m used to this, but I would also say that even with being used to it, you never know what you’re going to encounter on the other side of the door. So I think it’s just really important that we are vocal about what the needs are and how those things could be remedied and that we are also very careful with our bodies and the bodies of the people who we are supporting because nobody needs to get hurt.
Amy Scherer:
I couldn’t have said that any better, but I think that might be it as far as our story.
Jack Rosen:
And we’d like to congratulate Amy on being the most frequent guest on National Disability Radio. This is appearance number four. So thank you, Amy, for joining us throughout the years.
Amy Scherer:
Thank you. I’m really glad to join, and if there’s ever anything I can do to help in the future, I’ll be glad to come back.
Stephanie Flynt:
Amy, one more appearance and we can induct you into the Five Timers Club, like SNL.
Amy Scherer:
Wow, that would be amazing.
Stephanie Flynt:
Jack, you know how we’ve been having office temperature issues?
Jack Rosen:
Yeah.
Stephanie Flynt:
So when it gets cold in the winter time, you might need to be careful about leaving your windows open because you might end up freezing your computer. Windows open. Freezing. That was probably terrible. I’m like, maybe we should do an encore joke. That was pretty bad. That was the worst joke ever. I can’t believe Michelle was not here to … Like, get it? Windows, freezing, computer.
Jack Rosen:
Thank you, Stephanie. Until next time, you can email us at podcast@ndrn.org. You can follow us on LinkedIn, Twitter, Threads, Facebook, and Instagram,
Raquel Rosa:
And keep your computers warm, guys. Keep those windows closed.
Outro Music Plays
The gang (well Michelle and Jack) goes abroad! From Brussels, Michelle interviews Alejandro Moledo the Deputy Director and Head of Policy of the European Disability Forum. Then Jack conducts out spotlight interview from a hotel lobby in Spain, where he speaks Mercedes Lopez Miranda about her experiences being a person with a disability in Europe.
To learn more about the work the European Disability Forum does visit https://www.edf-feph.org/
To view the full transcript for this episode visit https://www.ndrn.org/resource/ndr-june24/
Stephanie Flynt:
What’s your cold open going to be about?
Michelle Bishop:
It’s probably going to be that now.
Jack Rosen:
Probably that. I don’t know. I’m tired.
Michelle Bishop:
Jack, I’ve never seen you so full of life and vivacious.
Jack Rosen:
Yeah, I don’t know. It’s too hot out to podcast.
Michelle Bishop:
Too hot to pod?
Hey, hey, welcome back to National Disability Radio. It is a little bit hot in D.C. right now and we are all a little bit blah, but I am one of your hosts, Michelle Bishop, the voter access and engagement manager at NDRN.
Stephanie Flynt:
And I’m Stephanie Flynt McEben, public policy analyst at NDRN, and please send coffee gift cards if you feel so inclined. You’ve got our little electronic email address. Okay, thanks.
Raquel Rosa:
And this is Raquel Rosa, your community relations specialist at NDRN and your final third of podcast hostesses.
Michelle Bishop:
Hey, Stephanie is fueled entirely by coffees. You know how most people are 75% water or whatever? Stephanie is 75% iced coffee.
Stephanie Flynt:
I am, yes. And I almost hate to say this because if people find out there might be a supply shortage, but they sell iced coffee in cartons and I was last summer years old when I found that out and it’s been life-changing.
Michelle Bishop:
You drink cartons of coffee?
Stephanie Flynt:
They have iced coffee cartons, like half gallons.
Michelle Bishop:
You’re telling me you drink a half gallon of coffee on a daily basis?
Stephanie Flynt:
Not a daily basis.
Michelle Bishop:
That’s a little scary.
Stephanie Flynt:
Not on a daily basis.
Michelle Bishop:
Speaking of people who are energized and ready to go, where is our producer at?
Jack Rosen:
Oh, I was sending an email asking them to turn up the AC. Hi, producer Jack Rosen here. That’s all I got. I’m genuinely miserable right now.
Michelle Bishop:
This is an enthusiastic episode we have for you all.
Stephanie Flynt:
Very enthusiastic.
Jack Rosen:
Yes. To be clear, I’m miserable about the heat, but I’m excited for our guests on today’s episode. Michelle, you want to tell the people who we have on?
Michelle Bishop:
So I recently had the honor of traveling to Brussels, the home of the European Union, to bring you our very first international episode. We don’t have applause, so now we have to start doing it ourselves. I actually got to visit the European Disability Forum, or EDF. They’re an umbrella organization of persons with disabilities that defend the interest of over 100 million people with disabilities in Europe. As an independent nongovernmental organization that brings together representative organizations of persons with disabilities from across Europe, they’re run by people with disabilities and their families and they’re proud to be a strong united voice of persons with disabilities in Europe. EDF envisions a Europe where persons with disabilities are fully included in society on an equal basis with others. Does that sound familiar? They work to ensure full inclusion in society of persons with disabilities and access to their human rights through active involvement in policy development and implementation and monitoring of the UN Convention on the rights of persons with disabilities in Europe.
Stephanie Flynt:
That’s cool. Oh my goodness. Excited about the interview coming up next that you’re conducting, Michelle. Is that correct?
Michelle Bishop:
Are you all jealous? Are you so jealous?
Stephanie Flynt:
I am jealous, yes. I’ve never been abroad before, so I’m definitely jealous.
Michelle Bishop:
Whoa. We’re going to have to do a second international episode and take Stephanie abroad.
Stephanie Flynt:
Yes.
Michelle Bishop:
I’m in favor. Also, you should be jealous. It was in Brussels, the waffles alone and the fries were worth it.
Stephanie Flynt:
Oh my gosh. Now I want french fries. Thanks.
Michelle Bishop:
I went over to EDF’s offices and I got to meet with Alejandro Moledo, who’s the deputy director and head of policy. Alejandro leads and coordinates EDF’s advocacy and policy work at the EU level and supports the work of the European Parliament Disability Intergroup. Among other areas, Alejandro has developed policy positions and recommendations regarding political participation of persons with disabilities, accessible information and communication technologies, assistive technologies, and different standardization activities. He previously worked as a communication officer within the Parliament of the Valencia region as a journalist in digital media and a communication agency in Andorra and in a public affairs company in Madrid. He actually has an MA in political and corporate communication from the University of Navarra, Spain and George Washington University, and a BA in journalism from the University of Valencia with a year actually at York University in Canada. And I will warn you guys in advance that Alejandro and I had started having a really broad conversation about disability rights in US and in Europe, but they’re having elections coming up too and as soon as we got into elections, it got election geeky real fast.
Stephanie Flynt:
I’m here for it.
Michelle Bishop:
Alejandro, thank you so much for sitting down with me today. I just got into Brussels this morning, but I was so excited to sit down and have this conversation with you. Most of our listeners are American. They know a lot about disability rights in the states, but I don’t know if they know that much about the European Disability Forum, and I was wondering if you could start off by just telling us a little bit, a bit about that and what you do.
Alejandro Moledo:
Sure, thank you. Thank you so much for having me in your podcast. So the European Disability Forum is an organization that brings together the European disability movement. We are an umbrella organization and our members are those European NGOs that represent different disability groups such as the European Blind Union, the European Union of the Deaf, Autism Europe, Inclusion Europe, people with intellectual disabilities, and also those organizations at national level that represent the disability community. And we work very closely with the European Union institutions, as we are an advocacy organization that promotes the rights of persons with disabilities, and we do so by involving all our members in the policy-making and trying to influence the laws that are being adopted at EU level. And on top of that, we obviously work with our members in building the capacity of the movement and promoting the rights of persons with disabilities. So that would be more or less we do.
Michelle Bishop:
So we’re actually not that different. I’m with the National Disability Rights Network in the States and we are a national membership association, so I’m based in D.C. but our member organizations, the disability rights organizations are in every US state and territory, and we’re sort of their association that supports the work that they do and we work on policy at the national level. So we’re actually not that different. In the United States, we rely so much on the Americans with Disabilities Act. For the rights of people with disabilities, to protect their rights, it’s such a big landmark piece of civil rights legislation. There’s so much stuff in it, good stuff. There’s architectural access stuff, that places of public accommodation have to be accessible, but it’s also got non-discrimination and employment and access to programs and all those sorts of things. I’m wondering what that looks like in Europe. How are the rights of people with disabilities protected?
Alejandro Moledo:
Well, in Europe, finally we have the UN Convention on the rights of persons with disabilities ratified by all member states, and not only by all member states, but also by the European Union as a supranational organization. So this kind of universal ratification of the convention for us has been really a driving force for disability rights. And the thing is that, and you know very well, the convention was very much inspired by the Americans Disabilities Act and also from Europe, we also look at your good practices and good legislation also as a food for thought or inspiration for campaigns and advocacy that we do here in Europe. But when it comes to specific policies, which I guess is similar to within the US, but it’s complicated because we have the EU as having certain competencies in which the EU basically is the ruler, such as, for example, internal market. We have a single market in the EU and therefore, for example, laws concerning accessibility can be introduced and have been introduced by the European Union, transport services as well.
But then when it comes to other areas such as let’s say employment policies, education, in this case the member state has the competence and the EU has a supportive kind of role. And in this supportive role, obviously we also have certain room for improvements and ideas that can guarantee that member state exchange these good practices and can advance on the rights of persons with disabilities in different areas. So we work with this kind of complex policy system, but with the idea that every right that we have been achieving at EU level will come even if it will take time at national level, regional level, and local level in the coming years. EDF was created in 1996, and in 1997 the Amsterdam Treaty of the EU finally included disability in the article on non-discrimination and since then, we’ve seen how the EU has increasingly become more present in the everyday life of all citizens, but also on persons with disabilities. So we work with that scenario and trying to get the best out of it.
Michelle Bishop:
That’s really fascinating to me and I bet it is for a lot of our listeners because it sounds really similar to the United States in that we do have some overarching federal policy especially that protects the rates of people with disabilities, but we’re very much founded in this notion of states’ rights and the states having a lot of independence. And one of the things we often lament is what it looks like to be a person with a disability can often depend on where you live in the United States. The policies and the programs can look very different. How does that work here? Do the nations that are part of the European Union work together well on these issues? Is it complex? What does that look like in terms of someone who’s looking at policy around the European Union every day?
Alejandro Moledo:
Well, it really depends on the country and it really depends on the policy area that we are talking about. We often get the question like which is the best EU member state when it comes to the rights of persons with disabilities? And that’s an impossible question to answer because it really depends on how the country has transposed certain EU legislation because when we adopt, for example, a European directive, then member states have certain room for interpretation, particularly on how they want to fulfill the obligations of such European law. In this possibility, obviously from EDF, we prepare toolkits, guiding materials for our members to take this opportunity to advance on the rights of persons with disabilities. I’ll give you an example. Well, recently, back in 2019, we had the first ever horizontal legislation on accessibility, the European Accessibility Act, very important for accessibility in Europe.
Finally, we kind of catch up with the US when it comes to accessibility. And in this legislation we made sure that the European emergency number, which in our case is the 112, will become accessible for persons with disabilities. But it does not include national emergency numbers or other national numbers which are of interest and importance for persons with disabilities as well, so in our toolkit, in our guidance to our members, we recommended, “When you engage in discussions with your government, make sure to propose that in the national law, you also include the national emergency numbers.” That is how we can advance on accessibility, taking the European Union as a basis and then going forward and beyond. So the member states do cooperate well when it comes to certain areas, accessibility is the one that I just mentioned that I think is a good example.
In other cases, it really depends on the system they have in place. Because we have different social protection system and different, for example, with voting rights, which I guess we will talk in a minute, it’s very different across member states. So when countries do have similarities, they use a good space to share those good practices. And we do so at the disability community level, but also promoting that the EU ensure this kind of space for member states to discuss. We have the European Disability Strategy, and one of the flagship initiative of the strategy has been the creation of an expert group called the Disability Platform in which EDF and many of our members are there as civil society members. But also the CRPD, the convention of focal points of the EU and all member states. So this is a good forum for them to exchange on different policy areas and for us also to intervene and have our say on the different discussions and the different actions that this strategy was promising.
Michelle Bishop:
Okay. You mentioned voting rights and my face automatically lit up. As you know, back in the states, voting rights is my thing. I work on protecting and expanding all-site access to the vote for people with disabilities because our electoral process unfortunately is not yet fully accessible. We’re working on it. We have good federal law in place, actually. The Help America Vote Act of 2002 and the Americans with Disabilities Act actually applies, so we’re working on it. We’re getting there. I know there’s elections coming up in Europe as well because we’re about to go into a presidential election. It’s charging at us at full speed. There’s primaries going on as we record. So talk to me about elections in Europe and what that looks like for people with disabilities.
Alejandro Moledo:
Well, this is also a policy campaign that excites me very much and I’m also working very intensively on. In Europe, as I mentioned, we have many different voting systems, first of all, so the different voting tradition makes it difficult for having a homogeneous or kind of harmonized similar way of voting in all of the EU. We have certain member states in which we have closed lists, so basically the voter just picks a ballot and that’s it. We have many member states in which voters can cast a preferential vote. And we have for example, one member state, Estonia, in which voters can vote as an alternative means of voting by internet through our website, which is accessible by the way, and our members love it. And so the EU itself, as you know, the democratic institution that we have is the European Parliament. This is the one that represents European citizens.
Then the European Commission would be our government, and then the Council of the EU is institution that represents our national governments. But we do not elect the president of the European Commission or the commissioner, which would be the ministers, or the representatives in the council because these are the ministers at national level, so people elect them through their national elections. So the one that we elect directly as citizens is the European Parliament, and here the European Union has its law back in 1976. And obviously this was before the ratification, even before the drafting of The UN Convention on the Rights of Persons with Disabilities, and it includes very minimum set of rules. So we can say even if we talk about the European elections, we have actually de facto 27 different elections. And within this very diverse system in Europe, we use this kind of motto like united in diversity because even if we are very diverse, we elect the European Parliament. This poses challenges for the participation of persons with disabilities in political life.
And here at EDF, we published back in 2022 a research report. Every year we publish this series of human rights report, and that year in 2022 was the human rights report on political participation in which we kind of big dig deeper into the political or electoral rights of persons with disabilities and we make maps comparing the situation and data comparing the situation across the 27 member states. And we brought cases that really brought substantial change at national level, so I recommend your listeners to take a look at this report, which is really, really interesting. And the good thing is that it is getting outdated, which is great because that means that there is progress. I will tell you in a moment.
So in this report, we kind of divided the barriers into the legal barriers and the practical barriers because still today, there are 12 member states in which mostly people with intellectual and psychosocial disabilities that are under certain substituted decision-making regime like legal guardianship, for example, which are totally or partially incapacitated can be deprived of the right to vote. Among these 12 member states in which people with disabilities can be deprived the right to vote, in six of them if you are placed under total partial guardianship, you automatically lose your voting rights and obviously your rights to stand as candidate. And fortunately, we’ve seen progress.
Some months ago we got Slovenia changing their national law, and for the first time people placed under their guardianship will vote in the upcoming European elections in June. Last year, we had Luxembourg also changing their laws and ensuring that all persons with disabilities without exception can vote and stand as candidate to the European Parliament. So now all in all, we have 15 member states that uphold the right to vote for persons with disabilities without exception. However, if you look at the right to stand as candidate, the funny thing is that this number is lower. So instead of 15, we have only 10 countries that uphold the right to stand for office, and this still keeps alive this unfortunate double standard for persons with disabilities.
We cannot be active and political citizens, and we hope that member states will continue changing their national laws at these remaining 12 countries. From the European Union along with the European Parliament, we have proposed a new electoral law that ensures the right to vote regardless of legal capacity. But unfortunately the electoral law is a competence of the council, so the institution that I referred before, the one that represents our national government, and they are not really willing to have a new EU electoral law. Not because of the disability provisions in this law, but also because of other controversial aspects that member states are not willing to accept because elections are very sensitive and some of them, they don’t want Brussels to tell them how they arrange their elections.
Michelle Bishop:
That is shockingly similar to how we do the work in the states where elections are. Very few of our election laws are federal laws. Most of them are state laws and a lot of the policies are even set at the county level within the states. They’re very local and they absolutely do not want to be told how to run their elections, and they all do it a little bit differently. We also are working on this issue of people with disabilities losing the right to vote under guardianship. The majority of states in the US have some sort of policy in place where that can happen. In a number of them, a determination has to be made by the judge as to whether or not the person will lose the right to vote, but we do also have some states that automatically remove the right to vote based on guardianship.
So if you’re interested I can send you, the US Department of Justice just updated their guidance recently on the Americans with Disabilities Act, and it says in there explicitly that you cannot categorically disenfranchise voters with disabilities based on guardianship. And that’s I think the first time we’ve had something that strong in writing that talks about the fact that you can’t just automatically remove a right to vote from a person with disability based on guardianship, so we’re excited about that. I’m really interested in this report. Did you say our listeners can snag it online if they want to take a look?
Alejandro Moledo:
Yeah, definitely. If you just look for EDF Human Rights Report, political participation, you’ll find it. We have it in accessible format, ebook format as well. And we are updating the web page with the recent changes that we are aware of at national level because the report, unfortunately we cannot change it, but it’s really good because there is nothing like naming and shaming or comparing neighbors. So in Europe, when we have these maps with different colors, then suddenly I received an email from a national official telling us like, “Hey, please, we just changed the law. Can you change the color of our country in your report?” “Sorry, it’s in PDF. We can’t do that.” But we are making these kind of updates in the website of EDF. The European Commission made a recommendation in which they also recommended, so it’s not a binding document, but the commission can issue recommendations to member states, and the commission issued that recommendation proposing or suggesting to member state to remove the automatic deprivation of voting rights.
But they added, “Without redress mechanism or individual assessment,” something like that. So basically what they were saying is that it is bad to have this automatic deprivation voting rights, but you can have it on an individual basis. And from our perspective, the UN Convention on the Rights of Persons with Disabilities is very clear, everyone should have the same electoral rights. So we felt that the commission, it was not so ambitious or as ambitious as we would have liked to be. And also concerning the elections, the commission issued at the same time or a week before, I believe, a guide on inclusive electoral practices for persons with disabilities, which is very interesting because it brings specific cases and annexes in which you can look at different methods that the member states have put in place to ensure accessibility of the elections.
Many of them were, I must say, also taken from our report, which is great because that means that the commission is also looking at paying attention the inputs that we send them. And we cooperate very well with them because these are what we were just discussing, is the legal barriers. So people with disabilities that cannot simply cannot enjoy their political rights, but many more or millions I would say do not engage in the elections because of different practical barriers. And here when it comes accessibility, here when it comes reasonable accommodation, the right to choose to freely choose your personal assistant to assist you in casting the vote, which in two member states this is not possible. In two member states, you can only be assisted by an election official, which is really explicitly contradicting the UN Convention because you basically need to reveal your vote to a stranger.
And this obviously can be very detrimental in small and big communities, there is no difference. Everyone should have the right to freely choose the assistants to cast their vote. And when it comes to accessibility, this guide or our report can be a good source of inspiration because we have so many ways of voting in Europe. So I mentioned we have the internet voting in Estonia. In Belgium and I think in Bulgaria, we have voting machines which are not accessible. In countries in which there is a closed lid, have different ways of making it accessible like braille envelopes. There is countries in which you even need to hand write the name of the candidate, which is obviously posing many difficulties for persons with disabilities. There is a country, Romania, in which you need to vote with a specific booklet and using stamps.
So there are really a huge diversity of voting cultures in Europe, but what is really interesting of our report and this guide is that it shows that when electoral authorities cooperate with disability organizations, they find solutions. And we’ve seen that, for example, in the Netherlands, in Sweden, in Luxembourg, for example, when electoral authorities sit down with our members and with specific OPDs representing the disability groups and say, “Okay, how we vote here? Okay, we vote like this. How we can maximize accessibility of these specific ballot paper that we use. Okay, maybe we can enlarge the font size. Okay, maybe we can include pictograms. Maybe we can have a QR code that could assist blind people to get the information in an accessible web document.” So there are different solutions, and I think the key message from our report was that the cooperation between electoral authorities and the disability community is crucial to really remove these barriers for electoral rights. Sorry, I get too excited with this.
Michelle Bishop:
You and I both get too excited talking about voting and elections. I don’t know if they knew what they were getting into when they paired us together for this episode. But you brought up something I’m also really passionate about, that in the US you do have the right to the assistant of your choice, and that is protected by federal law. And I just think that’s a really important feature of elections because you should be able to get an election worker to assist you if you don’t have someone, but you should be able to ask someone that you trust to mark your ballot in the way that you want it marked, and you shouldn’t have to disclose that information to a stranger or to someone to whom you don’t have that trust relationship. But I’m really excited to dive into this report.
I love this idea of these maps and maybe generating some healthy competition among the different countries. I’d love to do that with the states in the US. We might steal that idea from you all. We’ll absolutely give you credit if we take it. I don’t want to take up too much of your day. I just want to say thank you so much for sitting down with me today. This was really interesting. It surprised me actually how many issues we had in common and how many things that we’re working on that you’re working on as well. It strikes me that the disability rights movement as a civil and human rights movement is just truly global, and we’re facing a lot of the same struggles all over the world and that’s hard, but also encouraging at the same time. We’re very much all in this together. Thank you so much for talking this afternoon.
Alejandro Moledo:
Thank you to you. Thank you very much. We should also work together.
Michelle Bishop:
Yes, absolutely. Let’s keep this going. I’m going to get you in touch with our public policy folks immediately. Thank you.
Alejandro Moledo:
Thank you.
Jack Rosen:
And actually, I have a surprise guest. I’m recording here from Spain and today I am speaking to Mercedes Lopez Miranda, who has spinal muscular atrophy, and she’s going to talk a little bit about what it’s like being a person with a disability and a wheelchair user in Spain. So Mercedes, do you want to tell us a little bit about what it’s like to be a person with a disability in Europe?
Mercedes Lopez Miranda:
Hi. First of all, I am from Venezuela and I am living in Spain like seven years old. Living in Madrid with a disability is really nice because almost every building has accessibility and the public transport is really good, but it has the exceptions like the Renfe. That is a train that doesn’t have any accessibility for wheelchair users, and also the streets sometimes are kind of hard to transit because they are super old cities to change, and that’s difficult. But almost everything works fine.
Jack Rosen:
One thing you mentioned to me before we started recording was that if you need home modifications, that happens through the government. We have something a little similar in the US for people who get Medicare and certain other services, but do you want to talk about that a little?
Mercedes Lopez Miranda:
Once a year, they open a free time where you submit a bunch of papers to adapt your home for your disability or the entrance of the building. So we’re doing that with our bathroom. We’re waiting a response for that, so that’s nice. We don’t have that in Venezuela.
Jack Rosen:
I guess what are some areas where you think Europe could do better in terms of access?
Mercedes Lopez Miranda:
Well, a lot of stores have super big steps to go there and the work area, sometimes it’s super hard to get because companies, even though they have a benefit for people with disability, they don’t hire you. I don’t know why. And then they don’t allow you to work remotely. So that’s the part that I think that they can improve.
Jack Rosen:
So you mentioned one of the challenges is employment and finding remote work. Do you want to talk a little bit about how that works over here and some of the challenges?
Mercedes Lopez Miranda:
Well, in my experience, I have I don’t remember how many interviews, but at least 50. And I get to the last one and they tell me that I can’t work from home, even though I can do my work from home, because I’m a graphic designer and video editor, and they don’t give me a reason why they don’t want to help me to work from home. So that’s one of the biggest challenges that I’ve been getting here in Madrid. So I don’t understand that part, the reason why I can’t work from home even though I can.
Jack Rosen:
Okay. I’m just going to say as aside, if the answer to this question is, “I don’t know,” that’s fine. Is there I guess anything you’ve seen in Europe that you think is something that I guess we could do better in the US?
Mercedes Lopez Miranda:
Well, I don’t know because I’ve been in the United States, and for me, everything is super accessible. So I think it’s in the reverse way, the European people needs to learn from America.
Jack Rosen:
Hey, we’re getting something right. Let’s celebrate that. Thank you so much, Mercedes, for taking the time to talk to us, and I’ll throw it back to the podcast team now who are probably wondering where this interview came from and why I didn’t tell them about this.
Michelle Bishop:
Excuse me, wait. Pause a second. Jack, are you telling me that you secretly recorded a spotlight story?
Jack Rosen:
Oh, but I’m not a host, huh?
Michelle Bishop:
Oh, wow. This episode was going so well between us. Well, it was a great spotlight story, I was going to say, but maybe we should just go to Stephanie for the joke.
Stephanie Flynt:
I don’t know. Now I have Bad Blood by Taylor Swift in my head, and I’m just like, “Is that about to be the theme of the podcast?”
Michelle Bishop:
If it’s the Kendrick Lamar version, I think Jack will like it.
Stephanie Flynt:
Oh, wait. That’s the version where someone raps, right?
Michelle Bishop:
Stephanie, do you not know who Kendrick… I can’t. Just don’t.
Stephanie Flynt:
I do know who Kendrick-
Michelle Bishop:
Lamar.
Stephanie Flynt:
… he’s the one that sings the HUMBLE. song.
Michelle Bishop:
Sings?
Jack Rosen:
I think Nala knows more now because when I was dog-sitting her, I showed her the pop-out concert.
Stephanie Flynt:
The what pop-up?
Michelle Bishop:
As Nala.
Stephanie Flynt:
Oh, she’s asleep. She just glared at me. Okay, so I’m convinced that my life is a pun because apparently I need more change in my life all the time. Not only did I get married… don’t sigh at me, dog… I ended up moving to another apartment and all the fun, moving further outside of the city. But when we moved, we realized there was no overhead lighting in our apartment. And so when I was talking with Quinn about it, I was like, “Well, we can just look on the bright side and get some more lamps.” My life is a pun. It’s fine.
Michelle Bishop:
Everything about this is amazing.
Stephanie Flynt:
Yes. So it is Quinn’s fault that we don’t have any light. We have natural light, we just don’t have light, light. The fake news light.
Michelle Bishop:
Well, give Nala a pet from all of us, especially from Kendrick Lamar, and Jack, please tell the people where they can find us on social media.
Jack Rosen:
You can find us on LinkedIn, Threads, Twitter, Facebook, and Instagram. And as always, you can email us at podcast@ndrn.org. Until next time, folks.
Stephanie Flynt:
Bye.
Michelle Bishop:
I’m tired.
In this (mini?) episode the gang interviews Stephanie’s wife Quinn McEben about their work as a mental health care nurse, and how mental healthcare can better serve the disability community. Also we talk a lot about their wedding.
Full transcript available at: https://www.ndrn.org/resource/ndr-may24/
Jack Rosen:
Can we talk for a minute about how we got on some sort of press release mailing list, and now people keep pitching us on podcast ideas?
Michelle Bishop:
I mean I just think that means we’re winning.
Jack Rosen:
If you are the person who put us on that mailing list, please reach out to me. I don’t mind. I’m not upset by it. I just want to know how this happened.
Michelle Bishop:
And I would just like to tell that person, thank you for your confidence in our podcast. Our listener, my mom, is very excited.
Stephanie Flynt McEben:
Wait, did your mom put us on those press lists?
Michelle Bishop:
You know what? If she did, that would be hilarious. And I would have to say well-played mom.
Stephanie Flynt McEben:
Because they are identifying you, specifically. The rest of us are nobodies. You are [inaudible]
Michelle Bishop:
Not only is my mom our only listener, but she’s trolling me through our podcast. I don’t think that’s true. But if it is, diabolical and I respect it, so what can I say?
Stephanie Flynt McEben:
I like it.
Michelle Bishop:
Jack, should we actually start the episode? [music] Welcome back everyone to National Disability Radio. We are so excited to have you back this lovely, gorgeous May. Spring is here. I am Michelle Bishop. I am one-third of your podcast hosting team.
Stephanie Flynt McEben:
And I’m Stephanie Flynt McEben, another member of our podcast hosting team. We got in trouble for the one-thirds last time, so I think I’m, is it the one-fourths?
Michelle Bishop:
It’s the one-thirds. I’m still enforcing this. Wait, we’re going to give that name change in a second. Stephanie slipped a little name change in there. So that is two-thirds of your amazing hosting team and our final host, Raquel Rosa will join us later in the episode for the interview. And then of course, as always, our trusty producer.
Jack Rosen:
Thanks, Michelle! That one was actually pretty nice. I appreciate it.
Michelle Bishop:
I want to stress that Jack and I don’t actually hate each other. We just can’t let this go. [laughter]
Stephanie Flynt McEben:
Let it go, let it go [inaudible]
Michelle Bishop:
Oh, wait. Do we have the rights to Let It Go?
Jack Rosen:
You can only sing like three seconds of that before we get sued.
Michelle Bishop:
Yeah. Disney, don’t make Disney come for us.
Jack Rosen:
Yes, that goes against my, we can handle any lawsuit rule. Not Disney.
Michelle Bishop:
Not Disney.
Jack Rosen:
That’s with the mouse.
Michelle Bishop:
No Disney. No. We’ll lose that.
Stephanie Flynt McEben:
Release the mouse.
Michelle Bishop:
So to redirect you from your beautiful vocal styling, Stephanie, tell us about this month’s episode.
Stephanie Flynt McEben:
So yeah, my wife is going to actually be our featured speaker on this month’s episode. As many may be aware, May is a Mental Health Awareness Month. And so we are going to be talking about individuals with mental health, disabilities and diagnoses when it comes to getting the care that they need and advocating for the care that they need. So super excited about this and this episode, it’ll be great. And I may or may not be a little biased, but–
Michelle Bishop:
Towards your own wife?
Stephanie Flynt McEben:
Yeah, kind of.
Michelle Bishop:
I mean, I would expect that, but also before we get into interview, congratulations Stephanie on having a wifey!
Stephanie Flynt McEben:
Thank you! Nala was a flower dog.
Michelle Bishop:
Stop.
Stephanie Flynt McEben:
She was included.
Michelle Bishop:
Oh, my heart can’t handle that. We’re going to have to see pics.
Stephanie Flynt McEben:
I was going to say there’s definitely pictures.
Michelle Bishop:
After we finish this episode everyone has to stay on it. We have to see pictures of Nala, the service dog being in the wedding. But congrats on your wedding and that’s why Stephanie had a sneaky little name change that she put in there with her new last name. And let’s jump to the interview.
Jack Rosen:
But wait, wait, wait. But before we do that, Stephanie, do you want to tell us who your wife is and why she’s on the show?
Stephanie Flynt McEben:
Yeah, so my wife, Quinn McEben is a mental health care nurse who works with clients who have varying mental health disabilities and varying mental health diagnoses. And so she works with them regarding their general health, their mental health, working with them on advocating for the services and supports that they need in particular in the healthcare space. So they do some really good work and super excited to hear about their perspective regarding this space. It’s going to be great!
Michelle Bishop:
Thank you for agreeing to be on this month’s episode. So I guess we’ll just kind of get right into it. So as individuals who live with disabilities ourselves, I know that we know firsthand some of the trauma that we’ve experienced related to our disability. And so we would love to get a provider’s perspective on different experiences that you’ve kind of worked with, with individuals and how providers and just individuals who are advocates for individuals with disabilities. Just how can folks be supportive and what has your experience with this been during your career as a mental health care nurse?
Quinn McEben:
Yeah, so I can kind of talk about some good things and bad things. So like you mentioned, I am a psychiatric nurse. I manage a lot of physical healthcare for a caseload with people with severe and persistent mental illness. And so I see both of it and both the physical health and the mental health disabilities. And I will say from nursing school on, we weren’t ever, of course we covered psychiatric care, but as far as physical health disabilities, people with blindness or hearing impaired or deafness in wheelchairs, we never talked about any of that or how to address that in a different way.
And so one of the biggest things I see with my particular clients is that it’s just what I would call medical trauma, which I would just describe as providers not being great. And whether that’s one of the things I see a lot is they come to the doctor for a physical health reason, say it’s chronic pain, say it’s diabetes, say it’s high blood pressure while they see their other meds and they see that they’re also diagnosed with schizophrenia, they’re also diagnosed with depression.
And suddenly that chronic pain is all related to the depression.Suddenly that diabetes doesn’t matter and we shouldn’t treat it because it’s just from the meds for schizophrenia. And so people focus in on the mental health side of it and is the somatic providers don’t necessarily focus in on other things. And so what happens then is those same clients don’t want to seek physical healthcare. And so I think the same thing happens in the mental health world, but I think the mental health world is better about just because we see a lot of clients with varying communication levels and just varying ways of looking at the world, which is I think a beautiful thing. But I think we’re kind of better about that. But as far as the physical healthcare, I think there’s a long ways to go. So a lot of my clients and a lot of my job really is advocating for clients and teaching them to advocate for themselves because whether it’s a physical health disability that’s visible or invisible, they get dismissed a lot because of any mental health concerns.
Stephanie Flynt McEben:
That is some super helpful information. Thank you so much for sharing that! I know that yesterday you and I were actually talking, specifically yesterday, about just general instances of when individuals, for example, who have mental health diagnoses or mental health disabilities,
Have not been believed by whether it be healthcare providers or whether it be just in different situations because of their disability. Could you talk a little bit more about that and what that’s looked like and how you’ve been able to help folks work through that, whether that be directly or indirectly through your job?
Quinn McEben:
Sure. So I think that looks like I was mentioning going to the doctor for chronic pain. And so something as severe as stomach cancer, right? And so imagine this, you have a client that is having stomach aches. It’s having a stomach ache, it’s getting worse, it’s getting worse, and they keep going to the doctor, but the doctor won’t do imaging because they’re like, oh, it’s stress, it’s anxiety. But they won’t do imaging. They won’t do any follow-up tests and when someone finally believes them it’s cancer that’s advanced to a stage that we can’t treat it. And these are kind of the stories that I unfortunately have seen that’s like I said, a generic example, but I have seen things that are that traumatic. And so things that I recommend to my clients are getting other, they can advocate for themselves and we teach those skills. But if the providers still aren’t believing them, because unfortunately there are some good providers and there are some providers that I think provide competent care that are discriminatory.
So you can switch providers or sometimes if someone else steps in, whether it’s a family member or another professional like myself where there’s a lot of support staff that talks to the physician and is like, “Hey, can we maybe think about running this tests?” And then just getting that outside advocacy, teaching those advocacy skills for the patient and then teaching them how to reach out to other people if they need. Again, it’s really sad that we mean that, but thankfully there are people in positions that are able to help. And then ultimately, if you have a provider that’s not believing you, you need a new provider. And not that we shouldn’t trust our healthcare providers, but I think that there is sometimes a mentality of that healthcare providers know best and we are humans, too. And so it’s about finding the right fit for you. And that healthcare provider might be great for someone who is able-bodied and doesn’t have any mental illness, but they might not be a good fit for someone who is diagnosed with mental illness.
Raquel Rosa:
Quinn, you were talking about self-advocacy resources, and I’m wondering if you could talk a little bit more about what that looks like and what plain language resources look like?
Quinn McEben:
So in my role, it depends on the client. We do it on an individual basis. And so some people are more familiar with different health terms and some aren’t. We have clients in my role that don’t have reading skills, and so we teach them whether they can still search on their phone for YouTube videos and they can hear how to describe their own conditions and they record before they go into the physician, this is what I want to say. And so we role play, what do you want to do when you say get into the physician. Because I think, I know I get nervous when I go into my physician of what am I going to talk about, especially if it’s a new provider. And so role play of what that looks like. And I think plain language I think can look different for different people because it really depends. And so in my role, I fortunately have the access to or the ability to talk to people where they’re at. And so it can look different for different people.
Raquel Rosa:
I really like that. I like that there’s a customized approach. And I think that also touches on trauma-informed approaches because I think people respond better when they feel seen and they feel like their needs are being focused on. So I think that’s really an excellent practice that you’re sharing with us. Thank you.
Quinn McEben:
Yeah, absolutely. And I think that that’s a lot of mental illness and even physical illness in a way is physical disabilities is rather than just a blanket approach of, okay, this person is a blind person and I met this blind person three years ago and that’s what they wanted. And so I’m sure this new blind person wants the same thing that people are individuals and they need their own individual things.
Raquel Rosa:
Right, yeah. I mean we’re all different people with different needs and to your point of even time, if you met somebody three years ago, it does not mean that those needs are going to be the same. So I think it really takes a lot of humility and relationship building and continuity of relationship to make sure that we’re addressing people’s needs in a thoughtful and powerful way.
Stephanie Flynt McEben:
Yeah, absolutely. Definitely, definitely would retweet. I don’t even know if that’s still a thing anymore. I like the idea of going about it and ensuring that we are approaching where individuals with disabilities are when it comes to the healthcare space because for a lot of individuals, and I will throw myself under the bus here, there are lots of times when I won’t go to doctor’s offices to get certain things checked out because I’ve not been believed before. And so that’s something that I definitely struggle with and definitely can relate to. So Quinn, yeah, thank you so much for sharing today about the things that you guys are doing in order to help individuals to continue to go forward with these types of things, despite the experiences that they may have had prior to that they’re worried are going to be repeated. So yeah, thank you so, so much for talking with us today about this.
Quinn McEben:
Absolutely! And from the healthcare provider side of it, when I’m talking to other healthcare providers who don’t have the privilege of those long-standing relationships like I have with my clients, I always just encourage them to ask the client what they mean. If you’re doing one MRI with this one client, just ask them because the client is going to know what they mean best.
Michelle Bishop:
Well, that was awesome and thanks so much to Quinn for bringing all their expertise to this episode. And also we said it to Stephanie earlier, so I’ll say it to you now, Quinn, congrats on your wedding as well and having your new amazing social justice warrior wife Stephanie, as well as congratulations to all the service dogs involved in the joining of this family. Okay, Stephanie, it’s that time. Do you have a joke for us this month?
Stephanie Flynt McEben:
Yes and no. It’s more of a story.
Michelle Bishop:
There is more of a story these days. These jokes get more and more elaborate. And I got to say, I respect it, Stephanie.
Stephanie Flynt McEben:
Oh, thank you, thank you! Thank you. So it’s one of those fun stories. So I don’t know if anybody’s ever told y’all, but, and apparently I’m really new to, clearly I’m new to the party. But all that to be said, individuals told me leading up to the day that something was going to go wrong, something was going to go wrong, something was going to go wrong. And yeah, my ring actually got dropped between the cracks of the gazebo, but don’t worry, it was recovered by ninja skills.
[“Here Comes the Bride” plays in background]
What really went wrong was we were on our way to our reception dinner and I was going down some Baltimore city steps and they were very uneven. One was two inches down and one was four inches down. I’m wearing three-inch heels. You add two, three and four to that and you get a broken ankle. So I quite literally fell for Quinn on my wedding day. And that joke is attributed to Quinn because Quinn is the one who came up with it and now I won’t stop using it and now they’re very annoyed with me. Fine, we’re all fine. And I literally looked up and I was like, well, I guess that’s the one thing that went wrong. And then I found out about the ring in the gazebo. So it was a good day y’all. It really was. I got to marry the love of my life.
Michelle Bishop:
You got married in a ’90s sitcom. They always had the episode with a wedding where everything goes wrong.
Stephanie Flynt McEben:
Yes.
Michelle Bishop:
And Raquel’s not here. Raquel’s name is to live in a ’90s sitcom. Oh, okay. We might have to revisit this next month, but also shout out to you and Quinn for already acting like an old married couple and irritating each other by stealing each other’s jokes.
Stephanie Flynt McEben:
I love that.
Michelle Bishop:
[laughter] No, seriously, congrats to everyone involved. That’s another amazing episode in the books. And Jack, do you want to tell the people where they can follow us on social media?
Jack Rosen:
You can follow us on Twitter, LinkedIn, Facebook, Instagram, and now Threads. And you can always email us at podcast@NDRN.org. Until next time folks.
Stephanie Flynt McEben
Bye. [music]
In what is (potentially*) the start of an ongoing series, this month we’re joined by our own Rebecca Shaeffer for a discussion of what people with disabilities experience in the carceral system, how they disproportionately end up there, and what we can do to support returning citizens.
*This is contingent on us being organized enough to do that.
Full transcript available at https://www.ndrn.org/resource/ndr-april24/
Jack Rosen:
All right. Michelle, you want to kick us off?
Michelle Bishop:
I’m sorry. Did we decide who was going to intro the topic and read the bio before we started recording? Or…
Stephanie Flynt:
No, we just clicked record.
Michelle Bishop:
Just started recording when we have no idea what we’re doing?
Stephanie Flynt:
♫ Be prepared ♫ Okay.
Michelle Bishop:
Was that The Lion King?
Stephanie Flynt:
Yes. Well, Nala’s here, I have to sing The Lion King.
Michelle Bishop:
Jack, use all of this.
♫ Intro Music Plays ♫
Michelle Bishop:
Hi, everyone, and welcome back to National Disability Radio. Woo. We don’t have a cheer sound, do we? I keep telling Jack to put a cheer sound in there, but I don’t think we have one.
Stephanie Flynt:
I think I said a cowbell.
Michelle Bishop:
Well, everything needs more cowbell.
Stephanie Flynt:
Yes.
Michelle Bishop:
But, everyone, applaud while you’re listening at home. Woo. All right. Good enough. I’m Michelle Bishop. I’m the voter access and engagement manager at NDRN and one third of your podcast hosting team.
Stephanie Flynt:
And I’m Stephanie Flynt, public policy analyst here at the National Disability Rights Network. And I am the two thirds. Can’t do fractions.
Michelle Bishop:
Look at us doing math.
Stephanie Flynt:
Yeah. I know.
Raquel Rosa:
I also don’t do math. This is Raquel Rosa. I am your community relations specialist here at NDRN, but if we’re going to do thirds, I do like pie and pizza, so we can pretend that I’m the final slice.
Michelle Bishop:
Also, it is April and none of us are doing your taxes, for a reason. We went into civil rights because math ain’t our thing.
Welcome, everyone. We have an exciting episode for you this month. Before we jump into it, do we have any news or exciting or, of course, hilarious things to talk about? And, of course, our producer should introduce himself as well.
Jack Rosen:
Oh, I don’t know, you introduced the three thirds of the podcast team.
Stephanie Flynt:
Oh, no.
Michelle Bishop:
The most bitter thing every episode.
Stephanie Flynt:
Okay, a four. Jack is now a producer host.
Michelle Bishop:
No. That’s not the vibe we discussed. This has been discussed. People all know it’s been discussed behind the scene that Jack is our Gelman. Okay. He’s our producer who’s featured on air. It’s a very specific important thing. I mean, Regis and Kathie Lee were nothing without Gelman.
Raquel Rosa:
That’s a reference for those of us who are over 40.
Michelle Bishop:
Wow. I feel personally targeted, but-
Raquel Rosa:
So, I’m right there. I’m right there.
Michelle Bishop:
Yes. So, we have a really interesting complex topic to bring to you all this month. We’re going to be looking at the intersection of the disability community and the criminal justice system. And this is a topic that it runs so deep in so much of the civil rights work we do in the disability community, and is so complex and so broad that actually if all goes well with this episode, we were thinking of turning this into a bit of a short series of episodes addressing this issue from different angles. Don’t ask us when those next episodes are coming out. We have not planned them yet.
But this month, we’re going to kick it off actually by talking to one of our own. We have for you Rebecca Shaeffer from NDRN. Rebecca joined NDRN in 2023 as a staff attorney for criminal justice and institutions. In this role, she provides technical support and training to P&As in their work monitoring, investigating and litigating rights abuses against people with disabilities involved in the criminal legal system, from police emergency response to jails, prisons, and reentry.
Prior to joining NDRN, Rebecca worked for over a decade in international human rights, where she helped to develop and implement new standards for criminal procedural rights in Europe, the US and Latin America, and supported networks of criminal defense lawyers with international and comparative legal expertise and peer learning facilitation. Raquel and Stephanie were live on the scene for this interview, so take it away ladies.
Raquel Rosa:
Today we have our very own Rebecca Shaeffer. She is the staff attorney at NDRN who focuses on criminal justice and institutions. Rebecca, thank you for joining us today. Tell us a little bit about yourself.
Rebecca Shaeffer:
Hi, I am so excited to be on the podcast. I’m an avid listener. I joined NDRN in July as the staff attorney for criminal justice and institutions. That means that I provide technical support and training to protection advocacy agencies for all of their work on behalf of people with disabilities who are in jail or in prison, who are in contact with police, or who are recently reentering back into society after being incarcerated.
My background is as an international human rights lawyer focusing on criminal systems and penal systems all around the world. And I’m super inspired by the work of NDRN and the protection advocacy agencies and just really excited to be part of this conversation and this work.
Stephanie Flynt:
Awesome. Thank you so, so much, Rebecca. Super helpful to have that background and super excited to have you as an avid listener of the podcast. So, you get a gold star for that one.
Rebecca Shaeffer:
I love gold stars.
Stephanie Flynt:
Yay. All the gold stars, all the awards, all the thanks. So, I guess, I would start off by asking, in your opinion, why do you think that individuals with disabilities are disproportionately incarcerated or affected by criminal systems?
Rebecca Shaeffer:
So many answers to this question. And first of all, I just want to acknowledge that people with disabilities can get into trouble with the law for the same reasons that anybody else can. And so, that happens. They’re people and sometimes they run into trouble and that’s definitely part of the story.
But you’re right that people with disabilities are disproportionately represented in prisons and jails and in criminal systems. And that’s for a lot of reasons, that really come back to our failure as a society to accommodate people in the community with disabilities and our failure to invest in collective care for people with disabilities, such that they become alienated from society. And that happens because people with disabilities, because of failure of society to accommodate them in childhood, because of abuse and neglect and exclusion from school and from activities, because of contact with institutions throughout growing up, may end up with trauma, may end up with a lack of educational and professional opportunities as they grow, or maybe attempting to self-medicate using drugs that are criminalized in our society.
So, for all those reasons, people with disabilities can end up with behaviors that are criminalized. But also, people with disabilities behavior is often misunderstood, particularly by law enforcement, as criminal when it’s not. This is particularly true for people with mental health disabilities, people with autism, developmental disabilities, intellectual disabilities, whose behavior in public sometimes attracts the attention of bystanders or of police and is misunderstood as dangerous or disruptive in some way. And they’re shuttled into the criminal justice system instead of having their needs met through health or care or other sorts of just normal cultural interactions.
We know that people with disabilities are more frequently hurt and killed by police in interactions and that they may find themselves in poverty and in homelessness and in other situations that leave them vulnerable to police intervention in ways that can be really dangerous for them.
There’s also ways that contact with police can go wrong in the course of normal traffic stops or other ways that police interact with people on the street, in public. For example, if someone’s deaf or hard of hearing, if they’re blind or low vision, or if they have mobility impairments, they may not respond to police when they’re told to stop or put their hands on the dashboard, in the same way that differently-abled people may, and that can be misunderstood by police and lead to unnecessary arrest or violence by police. So, these are the ways that people with disabilities get funneled into the criminal justice system at a disproportionate rate.
Raquel Rosa:
Thank you for shedding some light on that. Rebecca, you’ve touched on this a little bit. And in my thinking just about the breadth of the disability experience, I was hoping you could talk a little bit more about what it’s like for people with disabilities who are incarcerated. I’m sure it’s the big bite to take of the apple, but if you could just talk a little bit more about that.
Rebecca Shaeffer:
Being incarcerated is a horrible experience for pretty much everybody who goes through it. So, I want to start there, but it’s certainly not set up for people with disabilities. I mean, prisons and jails, like any other institution, have to comply with the Americans with Disabilities Act. Facilities should have an ADA coordinator, but nothing is going to away the fact that these facilities are just not set up for people with disabilities, regardless of what their disability may be. And this differs by facility and it differs between jail and prison. Prisons may be a little bit better some of the time at accommodating people, but if you can imagine, for example, being deaf, using sign language to communicate with people and having to be handcuffed every time you’re moved from one part of the facility to another. You can’t speak, you can’t communicate with people. How few people in that facility use sign language, understand your language, and how infrequently you’re provided with translation, appropriate video technology to make phone calls and communicate with, for example, medical staff.
All of these things make traversing an ordinary day incredibly perilous. And you can imagine the same thing for people who may be blind and low vision. Responding to the intense disciplinary regime on the intense demands for obedience and compliance with orders, requires an ability to understand and respond to the demands of officials quickly, or face discipline, which happens to people with disability quite a lot.
So, when their needs are not accommodated, they’re often disciplined, they’re put into solitary confinement perhaps, or they have privileges for folks. We may also find that people with disabilities don’t have access to programs inside, so they can be really isolated and not given the same access to recreation, to personal development that other people may have. And this can even mean that they end up spending more time in jail and prison than other people because they can’t, for example, get good time credits for taking programs, or demonstrate that they’re rehabilitating themselves in the same way that other people can.
So, there’s a lot of exclusion inside, a lot of isolation and alienation and a lot of punishment. So, we find that solitary confinement is used incredibly disproportionately against people with disabilities, often with mental health disabilities but not exclusively. And that has a knock-on effect of trauma and further disabling as people decompensate in an environment where they have really no stimulation, no human contact, no recreation inside.
And then, people who have difficulties with mobility just have trouble getting around these facilities. They’re not always accessible. People are not always given the medical equipment they need to get around. They may not be able to access the recreation yard. And we see this happen a lot as people age in prison and their needs change. There’s very little screening for people with disabilities, particularly for cognitive impairment, for autism, for DD and IDD. I mean, if you don’t come in with a strong sense of what your disability is and an ability to explain that to authorities, it’s unlikely that it’s going to get picked up.
And this is all happening in a background of just really poor access to medical treatment in a lot of facilities. So, if people have been on Medicaid on the outside. Inside, you don’t get Medicaid. Medicaid is cut off, social security is cut off, and your healthcare is provided by the prison or the jail. Usually, they have a contract with a private company and they’re motivated to cut costs. And in order to get access to healthcare, it’s not like there’s preventative care and you get regular well-personed visits like you would on the outside. You have to have a symptom that’s severe enough that you can convince a prison officer to get you to the medical clinic. And it can be really hard to convince workers at the prison that your medical complaint is serious and real. These are often ignored.
And then, the care that you get inside may be very, very poor. So, we see a lot of preventable illness and injury going untreated and people incurring unnecessary pain and suffering, illness, and untreated injury that happens to them because they don’t have regular and good access to healthcare. And there’s a lot of just punitive attitudes by prison and jail workers against people who are incarcerated. They’ll think that people are malingering, they say basically making up that they have health problems when they don’t.
And then, there’s also an accessibility issue here because in order to get the attention of prison officers to file a grievance or a request for medical care, usually you have to fill out a little form. And again, this is not a communication system that’s accessible to everyone. So, a lot of times people with disabilities have to rely on the kindness of another incarcerated person to help them fill out requests for medical assistance, grievances, complaints, requests for accommodations. And that can be really difficult depending on who you’re incarcerated with and what your disabilities are, what your relationships are like with people inside. So, everything just becomes much more difficult, and most people come out of prison in much worse health and with less capacity than they did going in.
Raquel Rosa:
This is incredibly sobering. And as you were speaking, I thought a lot about just the deference to people having bad motives, that in other words, people are governed to be sneaky or to do bad things. And so, therefore, the approach within the carceral system is to treat people poorly because they’re up to no good.
And then, with the added layer of disability, it just makes me think about easy scapegoat-type activities. This just sounds like a very lonely and painful experience for people. I am having a hard time just imagining what that experience is like. It is incredibly shocking and just makes me really think about the gaps that we have in our own movement to make sure that people with disabilities who are incarcerated are also part of the disability justice movement.
Rebecca Shaeffer:
Yeah. Thanks for saying that, Raquel. I think it’s really true. I mean, because of the nature of politics and the punishment ethos that’s really deep in American society, I can see where the disability justice movement hasn’t necessarily always embraced those members of our community who are in conflict with the law. I mean, it’s not a great constituency to bring to the hill. And there’s a way in which people with disabilities are sometimes seen with this sort of veneer of innocence, as good victims who need help. And we know that that’s not true and not the way that we want to be seen, not the way our movement wants to be seen, but this population of people, it’s a difficult constituency politically for our movement to embrace. But I think that we cannot participate in our collective neglect and abandonment of people with disabilities, that are the reasons why they ended up in prison in the first place.
And we also have to think about the future. What’s our vision for the freedom and liberation of people with disabilities? What do we think is happening to people in prison and what do we want for them on the other side of that? Most people are coming back to the community, and in what condition are they by the time they come out, if they come out? Because a lot of people also die inside or are further injured or disabled by their experience of incarceration.
So, I do think that we have to embrace our siblings who have experience of incarceration, to understand that jails and prisons are part of a continuum of carceral approaches to disability that includes institutionalization, that includes social erasure and exclusion from society. And to realize that jail and prison are just another way to disappear people with disabilities. And to refuse to participate in that, to continue to embrace them through the time that they’re incarcerated and all the way through their lives, requires us to confront our own stigma.
We also have to confront the ways that racism interacts with disability discrimination, and to understand that people who are, for example, Black and male and autistic, walk through this world with a different set of dangers than people who are white and autistic. And for us to really contend with those intersections, and to not leave any of us behind, because we’re not free till we’re all free.
Jack Rosen:
Rebecca, you’ve touched on a lot today, and I’m just wondering what we can do to support returning citizens with disabilities.
Rebecca Shaeffer:
I think it’s really important for people who work in this space, who work with people with disabilities to understand the ways that periods of incarceration impact the needs of people with disabilities. They are going to have disruptions to their benefit. They will have disruptions to their healthcare, and they will also have significant trauma and lack of faith in authorities. And all of these experiences make it harder to connect folks with the services they need.
So, to just be sensitive and proactive about understanding people’s histories of incarceration. You may not know that someone has been incarcerated before. You probably need to take proactive steps to reach out to places of detention, to reentry organizations to offer a disability-informed lens. I mean, ultimately, I think that neither the movement to reform our criminal legal system, our movement to liberate people from over-incarceration, and the movement for disability justice and liberty and power for people with disabilities depend on each other. And neither one of those movements is going to be successful without the other.
I see so often from my background in criminal justice reform that the kinds of reforms that are suggested often, unfortunately, are going to drive people with disabilities into institutions. Decarceration by itself is not going to solve the problem of failure to invest in community care. And at the same time, the disability justice movement can never be fully realized until we get our people free from prison.
So, I think that we need to be deeply in conversation with each other to ensure that the kinds of solutions, the kinds of policies we’re promoting are cognizant of the fact of criminalization of people with disability and the failure to provide appropriate care in the community, both driving incarceration and driving institutionalization.
And we’ve seen in the past few years, just a huge backsliding in commitment to freedom for our people. We’re seeing a return to policies that promote institutionalization, and we’re seeing a backlash to the small reforms we got following the uprising around the murder of George Floyd and the decarceration efforts that were made during COVID. Just a huge backlash and movement to both re-incarcerate and re-institutionalize our people, and a failure to invest in what we know works to keep people safe and together and in community.
So, I think that movement actors in both of these fields need to work really closely together and understand what it is people need to be safe and to be free, because ultimately, that’s a goal that we have in common, people who are working to make the criminal justice system fair and people who are working for disability justice. But the solutions don’t lie in just one of these conceptual political areas, and the solutions are what we need to focus on, because right now it seems like political actors and the press and the public seem to think the only option for meeting people’s needs is to put them somewhere, put them in a jail, put them in a hospital, put them in a group home, take them out of the community. But these are our people, this is our community, and we can only build public safety for all of our people together.
Stephanie Flynt:
Wow. Thank you so, so much, Rebecca. This has been an amazing discussion and I’m so glad that we were able to have this discussion today. I know that I found it very valuable, and I’m sure that our listeners will also find it valuable.
But I wanted to check in with you to see if you have any other final thoughts. I know that Jack made a great point about checking in to see how we can support individuals with disabilities when it comes to transitioning out of the carceral system, but I just wanted to see if you have any other final thought that you’d like our listeners to know or that you’d like us to know?
Rebecca Shaeffer:
Such a downer. I’m never the fun one at the party.
Stephanie Flynt:
You are the fun one. That’s why we have you here.
Rebecca Shaeffer:
The work that I do. I guess, what I would say is that despite the grimness of this area and the pain and the suffering that people are going through in incarceration, I have a lot of hope for this movement, particularly at the intersection of disability and criminal justice for reform and liberation movements, because I think it touches on such core values that we have as a society. Values around liberation, around belonging, and that there’s a huge amount of joy, of healing, of redemption that’s available to us if we can address the stigmas that we all have, both against people who have been in conflict with the law and people who have disabilities. And continue to work toward acceptance, belonging, and working towards solutions that really prioritize safety and health.
These are really positive values that we can promote that, I think, work politically, that work interpersonally, and that can lead to real paradigm shifts in what we consider to be public safety, because that means safety for our people.
Raquel Rosa:
Well, Rebecca, like I said earlier, you’ve given us so much food for thought, enlightenment and ways for us to just deepen our advocacy and to lean into the less obvious aspects of disability justice.
I feel like this is probably the most humbling episode that we’ve ever had, and I think I speak for all of us when I say how much we appreciate you for the work and commitment you have made to this aspect of our work. Thank you so much for being here.
Michelle Bishop:
Stephanie and Raquel, thank you so much. And of course, Rebecca as well. That was a fascinating conversation. I feel like we opened up more issues than we can possibly resolve in one episode of one little but very mighty podcast. So, I suspect you are going to hear some more episodes from us going forward, on this issue. But until then, now that she’s back in action, I suppose I have to ask, Stephanie, did you bring us a joke?
Stephanie Flynt:
Okay. Are you ready for my very much anticipated joke? Because I think it’s going to be a home run today.
Michelle Bishop:
Oh, no. Oh, that’s a clue. Okay. Yes, Stephanie.
Stephanie Flynt:
Oh yeah, absolutely. So, I do have a question. What do y’all think that brownies and baseball teams have in common?
Michelle Bishop:
Okay. Wait, wait, wait. So, brownies, the dessert, and a baseball team? Is that the question?
Stephanie Flynt:
Yes. Yes.
Michelle Bishop:
Okay. I’m thinking.
Stephanie Flynt:
What they have in common.
Raquel Rosa:
Is it batter?
Michelle Bishop:
Oh.
Stephanie Flynt:
They need to have good batters.
Michelle Bishop:
Oh, boy.
Stephanie Flynt:
This is courtesy of the Ben and Jerry’s thing in my fridge. I can’t remember what, I think that’s their chocolate fudge brownie thing. Not that this is a sponsorship, but if Ben and Jerry’s wants to sponsor my-
Michelle Bishop:
Your freezer?
Stephanie Flynt:
My freezer, that would be great.
Michelle Bishop:
Stephanie’s freezer brought to you by Ben and Jerry’s. There’s a chance we can’t use any of this, can we? Can we use this, Jack?
Stephanie Flynt:
I gave credit to Ben and Jerry’s.
Michelle Bishop:
Are we allowed to talk about them like this?
Raquel Rosa:
I think that’s another question for our general counsel.
Michelle Bishop:
All right. I’m making a list.
Jack Rosen:
I mean, my answer is, as I’ve often said on this podcast, if they sue us, it would be good publicity.
Raquel Rosa:
Then, I guess, you’re taking care of the legal fees, Jack.
Michelle Bishop:
Why are we allowed to run anything in NDRN? Is the real question.
Stephanie Flynt:
Right.
Michelle Bishop:
That said, got to admit, decent shows this month. Welcome back, Stephanie. We missed you so much.
Stephanie Flynt:
Oh, it’s great to be back. Thanks, Michelle. Thanks, Raquel. Thank you, Jack.
Michelle Bishop:
Jack, tell the peeps where they can follow us on social media.
Jack Rosen:
You can follow us on Twitter, LinkedIn, Facebook, Instagram, and now we’re even using Threads, so be sure to check us out. As always, you can reach out to us at podcast@ndrn.org. Until next time, folks.
♫ Outro Music Plays ♫
On this episode of National Disability Radio, we sit down with three women leaders in the disability rights movement, Marlene Sallo (NDRN), Maria Town (AAPD) and Robin Troutman (NACDD) for a discussion about the challenges of being a disabled woman in a leadership position, the challenges of balancing work and caretaking, and even the Barbie movie.
Full Transcript at: https://www.ndrn.org/resource/ndr-march24/
Raquel Rosa:
Give me the signal.
Michelle Bishop:
Get us started. That would be stretching if you heard that.
Raquel Rosa:
That stuff is all to be removed. 3, 2, 1.
Intro Music Plays
Michelle Bishop:
Welcome back to National Disability Radio. To all of our loyal listeners, we are really excited this month because it is Women’s History Month. I am Michelle Bishop with NDRN. I am one of your hosts of the podcast.
Raquel Rosa:
And I am Raquel Rosa. I am another of our hosts. It’s good to see you all today.
Michelle Bishop:
And unfortunately our last host, Stephanie Flynn, is out on leave. So she’s not with us this month, but she will be back. Stephanie, we miss you. Don’t leave us. I can’t believe I’m going to say this. We are not going to have your jokes, and I might miss it a little bit. So come back to us soon, Stephanie. So like I said, it’s Women’s History Month. Here we are, your all woman podcast, plus Jack. Jack, our producer, if you want to introduce yourself to the people.
Jack Rosen:
See, I was just going to sit back and listen, being as it’s Women’s History Month.
Michelle Bishop:
Oh, bravo. Yes, yes. We love an ally, yes.
Raquel Rosa:
Yes. Sisters before misters. Thank you, Jack.
Michelle Bishop:
So should we get right into it? Raquel, do you want to tell the people about this episode?
Raquel Rosa:
As Michelle said, this is Women’s History Month, and she had the pleasure of sitting down with three women leaders in the disability rights movement. She had a great conversation with Marlene Sallo, the ED of NDRN, Maria Town, who is the president and CEO of AAPD, and Robin Troutman, the interim ed of NACDD. Take it away, Michelle.
Michelle Bishop:
So this month on National Disability Radio is Women’s History Month. Ladies, it is our month and we have a really exciting conversation for you today. I’m going to be talking with three women who are leaders in the disability rights movement about where we’re at, where we’ve come from and where we’re going. So if I could ask you all to take a moment first to just introduce yourselves to our listeners, Marlene, would you like to go first?
Marlene Sallo:
Sure. Hi, everyone, I’m Marlene Sallo and I’m the executive director here at NDRN, and I go by the pronouns she/aya.
Michelle Bishop:
And Maria.
Maria Town:
Hi, everyone, my name is Maria Town. I’m the president and CEO at the American Association of People with Disabilities. Pronouns she, her and hers.
Michelle Bishop:
And last but never least Robin.
Robin Troutman:
Thank you, Michelle. Hi everyone, I’m Robin Troutman, interim executive director at the National Association of Councils on Developmental Disabilities. And I go by she/her pronouns.
Michelle Bishop:
So to get us started, since we just have such an amazing group of leaders on the podcast today, I was wondering if you could just tell us a little bit about your experiences specifically as a woman in leadership in the Civil Rights Movement and what it took for you to get here. It’s an open question for anyone who has thoughts.
Marlene Sallo:
Well, being that I’m in my feelings today, this is Marlene. I can safely say that it’s been a long road. I would say I’m the oldest one here on the call. And being a woman of color and an immigrant, there’s been a lot of doubt along the way from certain people in certain circles as to whether I could rise to the occasion. Obviously, I always have, but the microaggressions that I’ve encountered throughout my career are real. But you learn to ignore the noise, and you just live to your full expectation, and you show up to work, and you get the job done.
Robin Troutman:
This is Robin. I’ll just note that as a relatively new leader in nonprofit worlds, I suffer from a terrible case of imposter syndrome, that I definitely look around the room even on this podcast today of oh my, how am I included with these extraordinary women? But every day I learn a little bit more how to believe that I’m supposed to be here and just prove myself, as Marlene said. Just show them who you are and what you can do, and it will keep them quiet.
Maria Town:
This is Maria. I’ll just add, and I want to point out that Marlene said something amazing. She said, “Obviously, I always have.” And I just want to cheer for that. Obviously, she’s always risen to the occasion, and that’s true for so many of us. I think for me, especially as someone who is younger and who has a very visible developmental disability, a lot of times when I come into rooms, people just assume that I am not a leader. And I’ve had to really learn how to exert and show my own power because I think people just assume that someone who moves like me and who looks like me isn’t going to be a president and CEO.
And I’ve had to deal with a lot of internalized ableism, and I’ll give an example of this. Being specifically a leader of an organization that does a lot of work in DC, there’s a lot of moments where you’re supposed to be working a room, moving around it and shaking hands and making sure you catch the ear of a policymaker or another influential change maker. And I physically cannot do that a whole lot of the time. And so I have to constantly tell myself that I’m able to do the job that I have and find other ways to make it work. And that often relies on actually working with other people like Marlene and Robin and saying, “Hey, can you go tell this person over there that I want to talk to them and maybe make them come to me?” Or positioning myself next to the food or the drink table to make sure that I am seen, so that people can’t just walk on by or look me over.
Michelle Bishop:
Maria, positioning yourself next to the food is absolutely brilliant. I am stealing that one in the future. But we’ve known each other for a while, Maria, and I’ve never heard you talk about that before, about the expectation of who you are when you walk into a room based on your disability. That’s really powerful, and all of this is real. The ableism, the microaggressions that Marlene talked about, especially for women of color, all of these things that we’re up against, even if we keep moving forward. And I actually really felt Robin when she was talking about the imposter syndrome. That is my life every day. I constantly feel like a kid from Syracuse, New York, and every time I’m in a room with important people, I’m like, “How exactly did I get here?”
So it’s real and I think that that’s really a common experience for women, in particular, who are in places of leadership. And we could probably take more than a podcast episode, it would probably take a whole day just to dig into one of those issues. And I regret that it’s just a podcast and we don’t have all that time. But if we were to maybe take it and do something with it, something that’s useful for our listeners, how could we maybe better support women who are in our movement and create meaningful opportunities for involvement and for leadership for women in the disability rights world?
Robin Troutman:
This is Robin. I think something that is so important, not only in the disability community but for women, is that we have to just support each other. We can’t be fighting with each other because we’re already getting a lot of, as everyone said already, internal ableism and systemic racism and ableism and misogyny. And so we have to be able to support each other and uplift each other, because if we don’t do it for ourselves as women, as women or in the they/them or women presenting, then who else is going to? So we need to be able to find our own common ground and lift each other up.
Maria Town:
This is Maria. I feel like it’s always important to point out that disabled women and women of color and women leaders need a lot of the same things. Being a leader does not mean that you don’t also have caregiving responsibilities and need paid leave. Being a leader doesn’t mean that you also aren’t on benefits and need drastic improvements to our nation’s benefit systems so that you can save money and actually plan for your future. And I think a lot of the policy change that all of us are working on as individuals and all of us are working on in our organizations is hopefully change that when it happens will allow more women to lead, more women of color, more disabled women, more queer women, because I am constantly thinking about just who is not in these spaces with all of these important people. Not because they don’t have the knowledge or the expertise or the skills, but because our systems are keeping them out.
And I think one of the reasons that I am where I am today is because systems happened to work for me, and I feel like it was a just moment of luck, and I shouldn’t have to feel that way. I should have confidence that systems like inclusive education will work for everyone. And I think we still got a lot of work to do on that front.
Marlene Sallo:
I agree with everything that was said, so plus one for both of you. I also think about my role as a leader, and really I feel that I have a responsibility to those that come behind me to be a role model, to also bring those along with me, to lift others up, especially young professionals and help them and try to connect them to folks, especially here in DC where it is just so difficult. Just to make sure that I can serve as a source or a bridge for young professionals is so very important for me, especially those that don’t get the same opportunities that others might.
I myself, I went to Title I schools and we had public assistance, and so I worked really hard, but it was that one person who held their hand out to provide a reference for something or who really served as a role model and as a cheerleader for me, which will forever be my eighth grade teacher, Mrs. DiCarlo, that I think of to this day who gave me that extra oomph to have that self-confidence. And so as women, we need to be able to provide that to each other.
Michelle Bishop:
I love this story of a teacher. I don’t know if you all know my mom was a teacher, she’s also our podcast listener, but my mom was a teacher. So you’re going to make me cry, just thinking about how one person that you even meet maybe early in life as a kid is someone who you’ll remember for the rest of your life as having such an impact on the course that you took. I can relate to that. I imagine all of our listeners can. So I want to open that up to everyone. Were there women along the way who helped you get to where you are or are still a mentor or a cheerleader for you? I like that when you use cheerleader, women supporting women, I think is so important. But were there women along the way that were there for you?
Maria Town:
This is Maria. There were so many women along the way for me, really starting with the women in my family, my mom, my grandmothers who I was just thinking about this yesterday. My mom really encouraged me to dream. And I’m from South Louisiana and I thought it was funny that whenever I wanted to learn how to sew, which all of the women in my family did, my mom really did not want to teach me. And I think part of that is because she wanted me to know that I had options beyond being in the home. And my mom is a nurse, but she always really just encouraged me to dream so big and bigger than what I could see in front of me in South Louisiana.
And it’s interesting because I’ve met women along the way who helped me refine a sense of what I wanted to be and who I wanted to become because, of course, disability advocacy was not a career path that I ever saw as a child or even a young adult. And as I’ve continued on my journey, there have just been so many women who have been in the same field as me or folks who are in a completely different field. And I continue to rely on multiple group chats of other disabled women for support and guidance and whenever I need to just yell. I would not be able to get through my day without the support of other women.
Marlene Sallo:
This is Marlene. So along with Maria, I have to say my abuela has always been my biggest cheerleader and biggest supporter. She always used to say, “I brought you to this country so that you could have the freedom to be all that you want to be and all that you can be.” And so she too showed me how to sew. She was a seamstress in Cuba, so I give her a thumbs up for that. But she was also the first one to say, “When you marry, remember you’re not your husband’s maid. It’s equality.” Because in the Latino community, there tends to be that machismo going on.
But along the way I would say my colleagues, I’ve always had a really strong sisterhood with colleagues. We protect each other from any negativity. We lift each other up. We amplify each other’s voices. I think that’s been the best thing of all in my career. Sadly, outside of Mrs. DiCarlo from a leadership perspective, I’ve always worked in a very male-dominated arena. But I will say that the managing attorney in my first legal job, to this day we remain friends because she was so very supportive from day one.
Robin Troutman:
This is Robin and I’ll just start by saying I’m very jealous that you even had the opportunity to learn to sew because I did not and have been struggling to put buttons on my children’s clothes. So jealous that you all had that. I wish I had the ability to sew.
Maria Town:
We can teach you, Robin.
Robin Troutman:
Thank you. Please, please. I could barely do a button. It’s really, really sad. But I think similar to what Marlene shared, my grandmother was just a remarkable model of strength. She came to this country after World War II. She was a Holocaust survivor. She was a cancer survivor. She lost most of her family throughout the years. She lived to be 99. She lost her husband. She lost her oldest daughter, who was my mother. But she always was opening the home, cooking and feeding and saying that we always had a place with her. And so I’m that way too. People have a place with me. They can come over. I’ll feed you. I’ve definitely learned that, that we need to have more of these open, safe spaces for everybody, not just our younger generation and our children, but everybody needs a place where they can feel safe.
And so I’ve learned that from my grandmother, that despite everything that you might go through, that you can still be that guiding light and solid rock for others. And so I try to do that for my friends, my colleagues throughout. But there has been one woman leader who I, to this day, we still get lunch every so often. And I don’t think she realized that I was just sucking up all of the information and mannerisms and everything, how she dealt with conflict I have by osmosis gotten from her. And I feel like I’m a much better person who can have conversations, be more diplomatic, and it’s all from a former supervisor, Melinda, who is just an extraordinary woman.
Michelle Bishop:
I can say for my part, I don’t know if any of the three of you realize how much I look at the three of you in awe on a regular basis because you are all just rock stars. And it’s really amazing and it’s really exciting to see. And the fact that we’re having a conversation about women in leadership in the movement and we’re talking to three women who are running disability rights organizations is incredible.
As we’re having this conversation and all of your stories were amazing in striking, I feel like I learned a lot about all of you today, but moms came up, grandmas came up. We talked a little bit about teachers or professional colleagues, but there was a lot of those women in our families. And earlier in the conversation someone brought up the concept of caregiving. And that’s stuck with me as well in this conversation, where women, we’re going to work, and we are supposed to be bosses and leaders at work, and we’re crushing it, and we are breadwinners for our families and are contributing in that way.
But I feel like there’s still this expectation that on top of all that women are still caregivers. Whether or not we’re talking about a partner or children or aging parents or a loved one with a disability, I feel like that expectation is still there, that women are supposed to be the nurturers and the caregivers. And I’m wondering, what’s that for you all? Is that a pressure that you feel? And if so, how do we find that balance between being a boss at work, and I mean that in a good way, in a way like you’re crushing the game, and also maybe fulfilling some of those that we have at home?
Marlene Sallo:
Ooh, if I may jump in here, it’s Marlene. It’s really hard. I raised my kid by myself, and then that set things in motion where you were constantly going above and beyond what you needed to do because you didn’t want anyone to frown upon the fact that you also had to take care of your children at home. And then my grandma was sick, and we all were pitching in, so then that was the double requirement. And I was here in DC and you find yourself apologizing that you need to go back, that you need to fly out of DC to be there and pitch in for your loved one who was ill. And through all of that, as a woman with a disability who was self-identified later on in life, my disabilities are not apparent, you’re trying to keep all of that in check so that folks don’t say, “Not only does she need extra time, but she also has has a disability that’s keeping her out of work because of pain or whatever.”
And it’s a push and pull, and it shouldn’t be that way at all, because we’re all carrying and we’re all taking care of others and carrying our own personal loads. And we should show each other grace 24/7 because regardless of what’s going on at home, I’m still going to show up to work and I’m still going to get my job done. It may not be within the timeframe that you want, that 9:00 to 5:00 timeframe, but for all you know, I’m getting up at 5:00 in the morning and getting things done before I have to take care of those in my household. And in the evening I may put everybody to bed and then pick up and continue where I left off.
And a perfect example was my first week on the job as an attorney with the state, and my son got really, really ill, and I couldn’t be at work. And I was responsible for first appearances in the courtroom, and I did all of the petitions from my house using my FAX while taking care of my sick child. And fast-forward my first evaluation, and they thanked me for going above and beyond, but said, “I can’t give you the score I want to give you on your evaluation because we don’t have the money to give you a bonus. So we’re going to give you a three instead of a five. But know we noticed your extra effort.”
Robin Troutman:
Oh my Lord, Marlene.
Marlene Sallo:
Oh, I have stories.
Robin Troutman:
I’m sorry that happened. That’s not fair. But I will say similar almost is after I had my second child, six weeks later, I was carrying him at our annual conference because we did not have the ability to hire a temporary staff. So I walked around an annual conference with my newborn six-week-old baby strapped to my chest. But no bonus points there either. But as women we’re expected to make it happen when others aren’t. And I have to say I’m very fortunate that my husband, when it comes to cooking and cleaning, I know that I can count on him, but for things like taking the kids to the doctor and making appointments and knowing when everything is, that does still fall to me in that nurturing aspect. I don’t know if it’s not that he can’t, I think it’s just that’s my organization style.
I’m not quite sure. But that piece where with my kids, I have a 13-year-old and a 5-year-old. They’re at very different stages in their life, but they need their mom, and also they need me to work so that they can do the things that they want to do and play sports and use the computer. So it is always that push and pull. Marlene, you mentioned push and pull, and I immediately think of that amazing monologue in the Barbie movie about women. And it’s true. We can’t be everything to everyone all the time, but we also need to be afforded some grace, and sometimes we’re just not given it.
Maria Town:
Shout out to America Ferrera. And Robin, it does not have to be this way. It does not. And I think one of the things that I’m trying to do at AAPD is really focus on our organizational policies and culture so that our team, including myself, doesn’t have to be in these positions. And it’s something that I’m just constantly working on, and I don’t have children, but I do provide a lot of support for my family. And similar to what Marlene mentioned, I live in DC and my family lives in a different state and so a lot of that caregiving and support is remote. Very recently, my father was very, very sick, and I was his primary caregiver. And there was a moment where I was at the hospital with him, and again, he’s dying at this point. And so I was trying to be in all of his appointments.
But going back to the story I shared at first, because I have a mobility aid and I have a disability that makes my body spastic, a lot of the healthcare providers did not want me to go into the room with him. And they would say things like, “Oh, the exam room isn’t going to be big enough to fit your scooter.” At one point someone said, “Oh, well the wife usually goes back.” And my dad is single, he does not have a wife. And it was a reminder to me of just how much of our care system is just assumed to be done and built and continued by women. And I was constantly worried that my dad’s medical care and healthcare, the quality of it would be impacted because of ableism that was directed at me as his caregiver. And thankfully I don’t think that that happened, but it was just a constant.
And I also want to note, especially in the disability community, I provide a lot of care for friends, and a lot of friends provide care for me, and it’s been tricky. So over the pandemic, I lost ability to put on my shoes by myself, and it stunk because I can literally do everything else I need to do, but when it comes time to put on my shoes, I cannot figure out how to make it work. And so I’ve had friends come over and help me with my shoes, but it’s not enough of a need to qualify for something like personal attendant services. And when I travel now to conferences, I have a pair of shoes that I can slip on my feet, and I now have a running list of disability leaders who have helped me fasten my shoes, because I’ll flag somebody down at a conference and say, “Hey, can you help me?”
Just letting you all know, Marlene, Robin and Michelle, I’m sure one day I will ask you. But I don’t think that people would assume that the president and CEO of a civil rights organization often has to rely on the kindness of strangers to help her put on shoes, but that is a very regular occurrence for me every time I travel for work.
Michelle Bishop:
We got you, Maria.
Maria Town:
Thank you.
Robin Troutman:
Happy to help anytime.
Michelle Bishop:
Totally. Maria, you never once judged me when I’ve been … I can remember this time you and I were on our way into a meeting at the Department of Justice. It is the longest walk ever back to that conference room, you know the one I’m talking about, and I was limping something fierce that day. And you didn’t say a thing, and you didn’t judge, and you didn’t even point out that I probably should have worn more practical footwear when I knew darn well I was limping before I left the house that morning. So I got you. If you ever need a shoe, I got you.
Maria Town:
Thank you all. I really appreciate it.
Michelle Bishop:
Yeah, that one question just opened up more than I think I could have imagined in terms of the weight that we carry every day, but also the ways in which we’re showing up for and supporting each other, which is also really amazing. I think about that a lot these days, especially in this current world of work-from-home and hybrid work, which I think opens up a lot of amazing benefits to our lives and to how we manage work in life, but also comes with maybe some unanticipated side effects.
When everything is a Zoom meeting, they get scheduled back to back to back, as if no one needs a moment in between to do anything else or to catch their breath or to make sure a shout out to Rebecca Coakley and make sure we all ate lunch today, as disabled women often do not do. Or meetings get scheduled real early or real late because everyone’s thinking, “You just got to log into a Zoom and you’re already home and it’s not a big deal.” But who’s got kids at home that needs to switch over to parent duty and can’t necessarily take a late meeting just because it doesn’t mean that they have to run across town on the red line?
Actually Robin and I are on a coalition call together that used to be scheduled for every week very late in the day on a Friday, and Robin is my hero because she was the only person who had the nerve to say, “We can’t keep meeting at this time. My kids are off school. It’s a Friday. They go wild at this time.” And to which I immediately then was emboldened to jump in and say, “I, like Robin’s kids, lose all control after this time on a Friday as well.” And we were able to get that moved because it was totally impractical. I’m sure you remember that, Robin.
Robin Troutman:
I sure do. That was. Just even thinking about the pandemic and just I don’t understand how during the pandemic, because I guess we all were doing it, we just had that grace that we mentioned earlier. We allowed for grace. I was on a call with, if you remember early in the pandemic, the administration on community living. And my now five-year-old, who was only less than two, comes up to me to tell me he has poop on his hands in full volume to everyone at ACL. Just had to be like, “You got to wait a minute now because I have to go clean something.” But I feel like it’s only been four years. Despite what everyone is saying, what people are thinking, COVID is still real, and we need to be very aware that it’s not over for the disability community, a lot for the elderly. So we need to remember that just because it works for some, a situation is not going to work for everyone. And we need to be more accessible, more flexible and just more willing to listen and make changes.
Michelle Bishop:
Actually, that, I think, leads nicely to where I wanted to take this conversation to start to wrap us up, which is to say that a lot of our listeners, with the known exception of my mom, if you guys don’t know, it’s a running joke on the podcast that my mom is our only listener. But most of our listeners are staff at P&As that are in NDRN’s network, and we like to have something that they can do about this. If there was one thing they could do right now or how can they lead from where it is that they sit. Even if they’re not, we’ve got a lot of executive directors on the show today, but they may not be in that position of leadership at their organizations. How can they lead from where they sit? What is one thing that they can do right now to support women taking on meaningful leadership roles and coming up in this movement?
Marlene Sallo:
I would say, this is Marlene, we all start from somewhere. So as you said, from where they’re at right now, look to your left, look to your right. If there’s anyone that you can support, do so. If anyone is having a rough day, be kind, step up, try to give them a helping hand. And I always want to be surrounded by women that will say my name in a room when I’m not there in a positive manner. I think that is key to showing support to those in your circle, regardless of whether you’re a young professional or you’re days from retirement or even post-retirement. That’s what I want to be surrounded by. That’s the kind of group that I want to belong to. That’s the community I seek. It’s like we say each other’s name in the room when we’re not there, and it’s always for the positive, and it’s always to lift each other up.
Maria Town:
This is Maria-
Robin Troutman:
This is Robin. I’d like to … oh, sorry.
Maria Town:
I just wanted to shout out Michelle who’s done that at least twice today. So on emails today, Michelle has looped in a member of my team that I thought was copied who wasn’t. Robin, she’s looped in you. Just to shout out our host, Michelle is one of those people who I think really embodies that practice. Marlene, and I think that’s such a good way to be. And I also want to shout out the AAPD team who constantly push me in, again, our organizational culture. And I think if you have a way, even if it’s with your supervisor or another colleague of saying, “Hey, I really need meetings to start at 9:30 because it’s tough for me to be super alert for 8:30 or 9:00 AM,” or “I have to do kid drop-off in the morning. Can our meetings start a little later?”
Even conversations like that amongst colleagues can build towards larger changes in your organization and help you build up a coalition of the willing, folks who you know, you share values with, who will have your back when you want to take it up to the next level or challenge others in positions of power who might be helping to maintain these systems that are built with misogyny embedded in them. So Robin, I’ll pass it to you.
Robin Troutman:
No, thank you, Maria. I actually was going to say the same thing as a thank you to Michelle just because just like you said, she looked around, and she was like, “Wait, there are some women missing in this email thread.” And so thank you, Michelle, for making sure that the people who needed to be represented are represented. But just like my colleagues are saying on this call, one, we have to practice what we preach. We are always being looked at, especially as women, but as women leaders, as women leaders with disabilities. I too have non-apparent disabilities. I don’t necessarily promote myself as that, but I do. So we’re always being scrutinized, so we need to be in public supporting each other, finding who’s missing, who needs to be part of the conversation.
And I’d also really put in a plug for mentorship. You never know who sees you as a mentor, but there are so many young people there and not even young in terms of age, but young to our network and young to advocacy. So take them under your wing, and even if it’s just like a brief coffee conversation or tea, if you don’t drink coffee, or water if you don’t drink tea, it’s taking a few minutes to make somebody feel welcomed and that they are vital to the conversation goes a long way as well to uplifting and supporting.
Michelle Bishop:
This is an audio podcast, so none of you can see me, but I’m cheesing right now. Thank you. Y’all made me feel so good. But yes, it’s important to me and I know it’s important to all of you. Women supporting women is a big part of how I think we all have gotten to where we are and keep it moving even when it’s hard. And I think that that’s really important. And I would say also to our listeners as well, if you are listening to this podcast and you don’t identify as a woman, you are not excluded from this conversation. There is room for allies in every movement. And if you look around in a room and you don’t see any women or women who are in positions of leadership represented, that’s a thing that you can call out or invite other folks into the room.
There are different points in my career, and I bet it’s happened to you all as well, where I am sitting in a meeting and a male colleague has asked a question about something that I was working on or given credit or a project that a woman colleague of mine had actually been working on. And I think anyone in that room can see that, be conscious of it and call it out and take steps to correct it. Anyone can do that and can support women who are coming up in the movement, and I think that’s really important. There are small things.
Marlene started off the conversation today talking about microaggressions, and I think there are small things that we can all do to see those, to be conscious of them and to see them and to acknowledge that they’re there and to do something about those in the spaces that we’re in from the chair in which we sit. So hopefully that inspires some of you. We’ve had some amazing inspirational conversation today about so many things and what each of you are up against, but also where you find strength and support in how you’re getting it done. And I think that’s incredible. I think that’s the message of March is that women rock. At least that’s what I take from it.
We even shouted out the Barbie movie, which I think is very important actually. I think we all know that monologue from the Barbie movie that was referenced and how much it absolutely hit the nail on the head. I know we probably opened up more questions than we answered today, but it’s an ongoing conversation, and it’s an ongoing process. And I’m just so thankful to all of you for joining us and having this conversation with me today. You know I think all of you are incredible. I’m sure all of our listeners know it now as well. But thank you for taking time out of your really busy schedules of juggling all of the things and having this conversation with us. I really appreciate it.
Raquel Rosa:
Well, thank you, Michelle, for hosting a really lively and empowering conversation. As women, we obviously look up to others who are leading this work, and I think we are seeing a legacy being formed before us. So thank you for facilitating that conversation. And I don’t want to put words in your mouth, but I’m sure it was a really special experience for you.
Michelle Bishop:
It was awesome sitting down with those three. I didn’t know how deep the conversation was going to get, but they brought the realness, which I know all three of them, so in retrospect, I should have known they were going to bring the realness. It was so cool to have that conversation. And what you’re saying now is making me think of this conversation I had with a colleague of mine years ago, where we were talking about how when you look at the Civil Rights Movement, there’s so many women in the work, there’s so many of us that work for these organizations, and we were like, “Ten years from now we look around, and none of us are in leadership positions, and none of us are executive directors and CEOs, then we know there’s a problem.” So the fact that it was so easy for us to identify three powerful women who are at the heads of their organizations that are major disability rights organizations to have this conversation, that to me, I just felt really encouraged. So that was so exciting as a way to mark Women’s History Month.
Raquel Rosa:
I love it. And I’m sure that young Michelle at the beginning of her career is very proud of you. I know that Young Raquel is very proud of us. So yay.
Michelle Bishop:
That’s Raquel. Started from the bottom. Now we’re here.
Raquel Rosa:
Yes, yes.
Michelle Bishop:
That might have to suffice as the joke for this month. That might be as good as it gets. I’m realizing now how hard it is to have a joke prepared every month. I don’t think I can pick on Stephanie for this anymore.
Raquel Rosa:
Stephanie, you are missed and we will see you very soon.
Michelle Bishop:
All right, everyone, we hope you enjoyed that episode. As always, you can reach us at podcast@ndrn.org, especially if you have ideas for future topics that you want to hear covered on the podcast. If there’s something that you want us to talk about, guests you want us to have, we would love to hear it. You get to talk now, Jack, you don’t have to just listen. Do you want to let the people know where they can find us on social media?
Jack Rosen:
Thanks, Michelle. And you can follow us at NDRN Advocates on Twitter and Instagram, on Facebook and LinkedIn at the National Disability Rights Network. And you can follow us on TikTok even though we will never post there. Until next time, folks.
On this episode of National Disability Radio we sit down with author Jules Sherred, who wrote the cookbook “Crip Up the Kitchen” about how he rediscovered his love of cooking after finding a way to make it accessible. Then we are joined by Natalie Alden from Disability Rights Florida, who speaks about her experiences traveling as a person with a disability. Finally, Stephanie tries a new joke format.
See more of Jules’s writing, including where to purchase “Crip Up the Kitchen” at https://julessherred.com/
Full transcript of this episode is available at https://www.ndrn.org/resource/ndr-december23/
Transcript:
Stephanie Flynt:
Is that our cold open? I thought it had to be longer than 30 seconds.
Michelle Bishop:
Well, welcome back to National Disability Radio, NDR. Woo! Jack, put an applause in there. Woo!
All right, so welcome to our amazing holiday special. Happy holidays, everyone. At this time of year, there’s what, at least 20 different holidays going on? So whatever it is that you celebrate, happy holidays. I am one-third of your hosting team, Michelle Bishop. I’m the Voter Access and Engagement Manager at NDRN.
Stephanie Flynt:
And I’m Stephanie Flynt, Public Policy Analyst at NDRN, and I’m also one of your co-hosts. And you know what I can’t stand? The “All I Want for Christmas Is You” song by Mariah Carey. If I have to hear that song one more time…
Michelle Bishop:
Stephanie coming in hot. How could you say that? It’s a classic!
Stephanie Flynt:
The people need to know how I feel.
Michelle Bishop:
I don’t know that they do. Oh, no.
Stephanie Flynt:
Yes, they do.
Michelle Bishop:
Do not send hate mail to podcast@NDRN.org, please. But while we’re on the topic, I think “Santa Baby” is creepy. Anyway, Raquel, take it away.
Stephanie Flynt:
It is though.
Raquel Rosa:
Hey, everyone. This is Raquel. I am back from being sick. So for the better or worse of it, I no longer sound like Marge Simpson and her sisters. And I’m Team Stephanie; I also don’t like “All I Want for Christmas Is You.” And if you want to send hate mail, the email is raquel.rose@NDRN.org.
Stephanie Flynt:
Yes!
Michelle Bishop:
You know what? That’s it. Cut recording. Cut recording. I’m too upset. I can’t go on because I love that song. Jack, well actually, first, Jack, introduce yourself as our producer and then just go ahead and just cut. This episode’s canceled.
Stephanie Flynt:
No. Tell us your opinion on “All I Want for Christmas Is You,” okay?
Jack Rosen:
My opinion is that I’m Jewish. Hi. Producer Jack Rosen here. And since this will be coming out the week of, wishing all of our listeners a happy Hanukkah.
Michelle Bishop:
Yes, happy Hanukkah to you, Jack, and to all of our listeners. So this is our big holiday special. So what do we have on tap, Jack? Who do we have for this episode?
Jack Rosen:
First up, we have Jules Sherred, who is a cookbook author from Canada. He wrote about how he rediscovered his love of cooking and made the kitchen accessible to him. And Raquel, who is our spotlight story today?
Raquel Rosa:
Well, we are in for a treat. We have Natalie Alden from Disability Rights Florida. She’s going to talk to us about traveling while disabled.
Stephanie Flynt:
Well, first and foremost, Jules, we are super excited to have you on our podcast today. How you doing?
Jules Sherred:
I am doing great and I’m excited to be here too.
Stephanie Flynt:
Awesome, awesome. So I guess my first question for you, especially somebody who also really has a love for cooking as well, something that I’m super passionate about, how did you rediscover your love of cooking?
Jules Sherred:
What happened was for a long time because of how my disabilities progressed, I could not cook. And I used to spend five-plus hours cooking for myself and people that I love. It was my joy and the way I would de-stress. And so I watched a video of another cookbook author using an Instapot and talking about how Instapot had helped her manage cooking with rheumatoid arthritis and parts of my disability mimic rheumatoid arthritis. They’re very similar in how they work as far as pain and inflammatory responses and mobility issues.
And before that, my exposure to the Instapot was people telling me how much I needed one and then 10 minutes of them ranting about all the things that they hated about it. And I’m like, “That’s not a way to get me to use the tool,” but I saw this person actually talk about things. I’m like, “Wow. That, I need.”
So I got one and instantly it revolutionized my cooking and made cooking accessible to me. And then I started to experiment and develop recipes specifically for the Instapot as well as play with other tools that able-bodied people typically poo-poo and act like they are not good tools that are amazing for disability, but no one ever talks about them in terms of an accessibility device. They all just either talk about how they don’t like it or how it makes somebody lazy to use something like this or they don’t understand why this tool exists.
And so just over time, I just began to play with things. And as I developed my blog, Disabled Kitchen and Garden, I wrote a post one day with my favorite accessibility tools in the kitchen, and then some people in the comments left their own things that they use in the kitchen that they use not as prescribed. And an example of that that I talk about in my cookbook is an egg multi-slicer that can also be used to chop things like strawberries and mushrooms with soft skin and stuff like that. That’s how it all started.
Michelle Bishop:
So Jules, I have to ask because I am a spoonie myself, and if our listeners aren’t familiar with the idea of spoonies, we are disabled people for whom chronic pain is a regular part of our disability experience. I know that’s something you talk about in your work. And so I was wondering what does replenishing your spoons look like for you and how is that something that you’re able to prioritize, that kind of self-care, in a society that puts such a heavy emphasis on productivity and some of those really ableist kind of ideals?
Jules Sherred:
My go-to is doing flat happy on the couch with my dogs. Flat happy is not really napping, though it’s supposed to be napping, but it’s just lying down, cuddling with my dogs, watching something on television, doing something that requires absolutely no effort and no thought because my spoons are both fatigue-related and pain-related. And as people who deal with both, they know that is a circular, that’s the word I’m looking for, is a circular process where your pain makes you more fatigued and your fatigue makes your pain levels higher and you have to cut that circuit.
So I do things that require absolutely no effort and just make me happy. But that’s just my number one is just vegging out and doing nothing and feeling great about doing nothing. Even reading requires too much energy to do, so it’s all about things that I can do passively and boost my serotonin and hormone levels.
But to go even further than that, I have a system where I check in with my body three times a day and I base my activities off of what my body is telling me I’m at. So I assess my spoons when I begin my workday, I assess my spoons again at lunchtime, and then I assess them a third time at the end of my workday. And the goal is to have one spoon left at my end of my workday. And if I find that I only have one spoon left at my lunch, then I’m done for the day and I do some type of self-care.
And the reason for that, and I found, and this is how I was able to get over, because for the longest time, I was like, “You have to work, work, work, work, work, work, work. You have to overcome, you have to power through. If you don’t, you’re lazy,” all that ableist messaging, I found that I started to keep a journal of all the times I would stop working when my body told me to and how productive that made me compared to when I would just plow through. And I could see that taking breaks when my body said, “Take a break,” even if I was technically on a time sheet working less hours, I was actually getting more done because I wasn’t making mistakes, I wasn’t spending two hours on a task that would normally be 10 minutes if I was feeling better. And that’s how I’m able to be like, “Wow, so this actually works.”
And then I started to notice that all the self-care time that I would have to take throughout the week equaled one full work day. So I started taking a four-day work week and I’m even more productive now that I’m doing a four-day work week, and I understand that is a privilege that I have because I am self-employed. So my advice is if you have that capacity or that ability to set your own working hours and be flexible, I highly recommend doing less work time because you’ll end up doing more in that time that you are on the clock, so to speak.
Michelle Bishop:
Thank you, Jules, I really appreciate that because cooking, which we’re talking about today, requires spoons. So does entertaining for the holidays, so I love that that’s something that you think about and integrate into your work. And for any of our listeners who maybe aren’t familiar with spoon theory, we can put some links for you in the show notes so you can learn more.
Jack Rosen:
And another thing that cooking can require for some people with disabilities is accessibility. I know that’s something you touched on in your book, so I’m wondering how did you incorporate universal design into this cookbook?
Jules Sherred:
When I was creating the cookbook, I tried my best, with the help of beta readers and other disabled people, talking with them, having conversations about what are their most common points of failure in the cooking process. And so one of the things that I did is I created recipes that address those points of failure and eliminated them. So some examples of that are complete equipment lists because for people who have different types of cognitive dysfunction, the process of trying to figure out what they need to cook together with equipment, that step alone can take them upwards of two hours, and then they forget something and it derails them during the cooking process, and then the food gets ruined, and then it’s a whole snowball effect.
I also simplify the instructions so that there’s no hidden steps because that’s another stumbling point. The way that ingredients are listed is also done with universal design in mind, but there’s also some how to organize your kitchen that consider both mobility issues and cognitive impairment, simple things. And again, this is having to overcome… That’s not the word I wanted to use. That’s a horrible use. Pushing back against those ableist messages that your house needs to be super neat and tidy and everything needs to be put away. And if it’s in sight, it’s cluttered and you’re a bad housekeeper.
The fact is, if you keep something in sight, you’re more likely to use it, you’re going to save spoons. And so I recommend your frequently used utensils and small appliances, you keep those things out at the point of performance. So it’s all about your point of performance, eliminating steps so that you’re not having to work as often, and things like doing food prep so that you’re only having to do it a couple times a month instead of that once-a-week food prep that people espouse that’s a recipe for you just to throw everything in the bin because you have no energy to cook that stuff that’s all chopped in your fridge, completely filled in Tupperware containers.
So those are some examples where I looked at not only the common stumbling blocks, but also the common symptoms of disabilities. So instead of focusing, say on arthritis or MS or ADHD or autism, I asked myself, what are the common symptoms? Pain, fatigue, cognitive dysfunction are the three main ones, but there’s some others that I address in the cookbook as well, and how do we create strategies and techniques to, again, cut that circuit of what causes all those things to flare up, and create strategies to support those rather than frustrate them.
Stephanie Flynt:
Yeah, no, that makes a whole lot of sense and thank you so much for talking about the tools and being able to organize those and those various techniques.
Another thing that I’d love to address is the low expectations portion of it and just being nervous about cooking. When you hear about cooking, and it’s like we were talking about a little bit earlier prior to this episode, it’s such a broad thing. And so when you think of cooking or when some people think of cooking, especially when you’re looking at low expectations that the disability community is subjected to or even just, “What if I can’t do this because of how I’m feeling today?” So I was wondering if you could offer some advice to disabled people who are interested in starting to teach themselves how to cook or even just learning how to cook in general.
Jules Sherred:
My first recommendation is to start small. I’m going to tell a story that has to do with confidence and creating healthy attitudes around food and how this works in Canadian culture, and I think it’s taught to some degree in American culture. But the sooner that you teach a child to cook and give them independence in the kitchen, the more confident they become because they have these little wins of I look at this thing that I made on my own, a sense of accomplishment, and it just boosts your self-esteem. Cooking, having the independence is a huge factor when it comes to mental health and self-esteem because you are winning, you are creating some type of, “Wow, I made this thing.”
So it’s about starting off small and setting yourself up for success and ignoring the things that may dissuade you from doing that. So don’t chop all your vegetables. Buy pre-chopped vegetables from the frozen food section because they’re actually healthier than the vegetables that are in the fresh food section because frozen food is flash frozen at the time of picking; fresh vegetables are dying and losing nutrients as they sit in that area. So you’re actually being kinder to your body by going to the frozen food section and you’re saving money. So that’s a barrier that you can eliminate.
Find recipes for, again, the Instapot, one of the reasons why I love it is because you can just dump a bunch of ingredients in it, put on the lid, set a timer, and you have succeeded in making yourself a delicious meal that has taken you no effort. There’s one recipe in my book that makes a delicious coconut tomato soup and it’s like five minutes. You open up a can of diced tomatoes, you add some onion, and you add a spice mix, you set the lid, and you’re done. Easy-peasy and you’ve made yourself delicious soup. I think there’s like eight servings of it and it’s an easy, quick win.
I think those are the biggest things. Start small and do what you need to do to eliminate the barriers that typically get in the way, and a lot of that for disabled people has to do with how much time it takes to prepare meals. Even something like using a meal kit is overwhelming because sure, all the vegetables are chopped for you, but you still have to stand at the stove for half an hour to one hour. And a lot of us do not have that capacity either because we literally cannot stand and a stove is too high to use in our wheelchair or we have some type of pain condition that prevents us from doing something “that simple.” And I have “that simple” in quotation marks like air quotes because it isn’t that simple.
Stephanie Flynt:
Oh my goodness. Thank you so much for sharing that with us and now I’m really hungry, so also thanks for that. But seriously, that is super, super helpful. And I know for me personally growing up, I definitely found a lot of those things super helpful. When I was a kid, I would make things like salsa in the kitchen and I’m so grateful that my parents encouraged age-appropriate exploration in the kitchen, so I love that you spotlighted that.
Michelle Bishop:
Well, we’ve talked about some pretty serious disability stuff, which is what we tend to do on this podcast, but this is also our holiday special, so we were wondering if you have a favorite holiday recipe you could recommend for us.
Jules Sherred:
In my cookbook is a recipe for air fryer potato scones and mashed potatoes scones. So the reason we typically make them, they’re a Scottish recipe that come from my Scottish heritage on my maternal grandmother’s side, and you make them with leftover mashed potatoes, and leftover mashed potatoes is probably a word up here like, “Jules, that does not exist. What are you talking about?” But you are making mashed potatoes anyways for the holiday meals, so make an extra half a bag or something and intentionally make those leftover mashed potatoes.
And a scone, for people who don’t know because it’s kind of like a biscuit, biscuits are cookies in Canada, they’re a hard cookie. It’s not that scones and biscuits are the same, but they’re very similar. But the thing with this scone is that it’s a dessert scone and you serve it hot fresh out of the oven and you slather it in butter or margarine or whatever you want to slather it in, and then you pour maple syrup, hot, warm maple syrup on top of it, but you could also do jam on top of it is another really good thing.
But it’s a dessert scone and if you wanted, you could also make it savory by if you have any bacon bits left over from either making your stuffing or your Caesar salad or whatever, you can throw some bacon bits and some chives or green onion, the greens on the green onion in there and make a savory version of it. And it is delicious and you really wouldn’t think that you put mashed potatoes in something that is supposed to be served sweet, but trust me, it works.
Michelle Bishop:
I love mashed potatoes. That’s my favorite thing to have at Thanksgiving. So you’re speaking directly to my soul right now, Jules. I will put mashed potatoes in any recipe, so I’ll be sure to go check that out.
Jack Rosen:
Well, Jules, you’ve given us a lot to think about. You’ve also made us a bit hungry or at least speaking for myself there. Thank you.
Michelle Bishop:
Starving. Absolutely starving right now. Definitely about to eat some mashed potatoes. Sorry, Jack. Go on.
Jack Rosen:
No, it’s fine. Thank you for taking the time to meet with us today and where can folks find more of your stuff?
Jules Sherred:
First, it’s been a pleasure being here, and if you want to go to julessherred.com, J-U-L-E-S-S-H-E-R-R-E-D dot com, you can find information to buy my book, Around the World. I also have a blog and there’s links to my social media and my other websites and everything. It’s like my online author hub is the best place to go.
Jack Rosen:
We’ll be sure to include that in the show notes. Thank you so much for joining us today, Jules.
Jules Sherred:
My pleasure.
Raquel Rosa:
All right, everyone. It is holiday time. We’re talking turkey, we’re talking Christmas, we’re talking menorahs. So now we’ve got people who are flying to visit family and friends, and this experience also includes people with disabilities. Today we have a wonderful guest who is going to talk to us about the highways and byways and airways of travel while being disabled.
Hi, Natalie. How’s it going?
Natalie Alden:
It’s going really well, going really well. Looking forward to the holiday season.
Raquel Rosa:
Yes. Can you just tell us who you are, introduce yourself, and a little bit about you?
Natalie Alden:
Of course, my name is Natalie Alden and I am a C5 quadriplegic and I use a power wheelchair. I was actually disabled at the age of 16, so I’ve been in this chair for quite a long time. I currently work at Disability Rights Florida, and I’ve been here 19 years. I primarily work right now on our representative payee program, which includes an extensive amount of travel. In this month alone, I think there’s one week I’ll actually be home. And so it’s a very rewarding job and I’ve actually been able to work on multiple parts of our agency and probably under every single grant that we have.
Raquel Rosa:
Yes, definitely a shining star at Disability Rights Florida. Natalie, just for bonus information, what do you do when you are not saving the world?
Natalie Alden:
Oh, so I am active with a lot of my city entities. I actually sit on the Mayor’s Disability Council. I also worked a lot with adaptive recreational and sports. I love to garden, I love to sew with my sewing machine, and I like to hang out with my five-year-old granddaughter.
Raquel Rosa:
Wonderful. So Natalie, as you mentioned earlier, you travel extensively. I know that you have been in Florida for a very long time and you’ve lived other places as well. I was hoping that you could talk to us a little bit about what your overall travel experience has been like. What method do you prefer? What have been some real successes? What have been some real bummers? Let’s start there.
Natalie Alden:
So I would say that overall, I do prefer to drive. I think that being somebody who has a very severe disability, but being able to have that control over going from point A to point B is my favorite mode of transportation. But of course, you can’t always drive where you want to go unless you want to take four days to get there. So of course, flying is one of those methods that is an essential at some moments in time. I’ve had some really good experiences and I’ve had some really poor experiences.
I used to live in Colorado and I know that back when my oldest son, oh, I think he was just a little over a year old and we had to fly from Colorado to Jacksonville, and driving with a power chair is one thing; driving with a power chair and a baby is way, way out there. I know that you see the accommodations and all of that, and I think knowing your rights show you more on what you can and can’t do.
I know I have a tendency to always gate-check my chair just because of the fact that I want to make sure that I have the most access to it. And when you have an impairment like mine, you are always the first person on the plane. They always want to make sure you’re getting down there first and you have plenty of time to get on there. I’ve traveled with PCA’s and I’ve traveled on my own. There’s good and bad points to that depending on the airline.
I would say in general, my experience with flying is that I’m only going to do it if I absolutely have to. I kind of don’t like to do traveling, especially in the holiday season, on a plane because one, you have more overcrowding, you have more overbooked airlines, and so I would just say be very picky and choosy if you do plan on doing it.
And pre-planning is essential. I think knowing exactly what’s going to happen, talking to the airline, making sure they’re understanding that you use a power wheelchair, of course they’re always going to ask you about the batteries. I always say if you can, have somebody take their phone or a camera and just do a walk around of your chair right prior to getting on the plane so that you have a digital recording of if your chair’s in really good shape or bad shape or whatever because that’s going to help you if something happens to your chair afterwards.
When you first go up to the desk and they look at your chair, some airlines are going to really look at your chair and they are going to write down anything that might be wrong with it if they can actually tell. What you don’t want happening is somebody who doesn’t say anything and they want to argue with you afterwards that maybe the damage was there beforehand. So I think it’s very critical to make sure you are getting some kind of digital record of the condition of your chair.
And then part of it is a preference on whether or not you want to get somebody to actually put you in that Hannibal Lecter chair, as I call it, from your chair to the actual seat. I know that I have PCAs that have traveled with me that simply they will just pick me up like a baby doll and put me all the way in my chair. But of course, if you’re going by yourself, you’re going to utilize the staff, the employees there, and communication is going to be your best thing on trying to get transferred to and from your chair into the seat that they give you.
And I think that’s also why you really want to make sure you’re contacting them ahead of time. I find if you’re really nice to the person who talks to you, even on airlines that don’t have preferred seating, they will really try to get you into a bulkhead seat or something where it’s going to be easier to do that transfer. A spoonful of sugar does go a long, long way.
And so I know that I did have the opportunity to travel all the way to Ireland on vacation one time, and that was a very long flight, and I think it’s very doable for people to be able to do things like that, but in the same breath, you have to be proactive. I’m very lucky because of the fact that I do have a drainage bag, so I didn’t have to worry about actually having to be transferred or for somebody to carry me to the restroom that probably is not going to be accessible enough for me anyways. So I do tell people that if you’re going to be traveling, feel free to bring a urinal or something.
I know one of the things many people with disabilities have a tendency to do is be like, “Well, I don’t want people to see that,” or, “I don’t want to…” I really say, “Embrace your disability, really embrace it.” It doesn’t matter. It’s a part of making it where you can be as independent as possible. And if me bringing a urinal on the plane is what I need, then that’s what I need. But I can go further and further on this, but I will go ahead and put it back to Raquel right now.
Raquel Rosa:
Those are really great tips. I think there’s a lot that I know it’s new to me. I think there’s a lot that is going to be new to a lot of our listeners. Really fantastic tips. I love the gate-checking. I love the video piece. Self-advocacy, holy cow. I mean, I already know about that part, but I’m just saying that how important it is to speak up and keep that accountability present, that’s the secret sauce, Natalie. That’s it.
I’m going to actually pitch it over to Stephanie because I’m sure she’s got a couple of questions for you as well.
Stephanie Flynt:
Yeah, no, absolutely. And Natalie, thank you so much for sharing your experience with us when it comes to traveling with planes, trains, and automobiles and all of the things.
I think that one thing that really has been demonstrated is that when it comes to individuals with disabilities, one size doesn’t fit all when it comes to traveling. Some things may work for some people and some things may work for others. And then also too, when we have these conversations, we’re able to maybe take different tips that other folks have that may work well for us. But yeah, no, thank you so, so much for sharing with us today.
I’m trying to think if I… Sorry, guys. I’m trying to think if I have any questions. I feel kind of bad, but I feel like you’ve covered all of the good things.
I guess maybe a question that I have for you, and I know flying can definitely have its challenges, its difficulties, and you’ve definitely covered some of the challenges and difficulties and how you’ve gone about advocating for yourself when it comes to flying and different things. And I don’t know, I feel like sometimes we need to hear some positive experiences when it comes to traveling through the holidays. I know for me personally, sometimes I get super anxious about what kind of person I’m going to get at TSA. Are they going to try to over-assist me? Are they going to try to test my boundaries?
Just for some context, I think most of our listeners know, I’m a blind person, and so sometimes people might, say for example, try to grab me in the middle of the security line and I’m like, “Hey, can you ask? Don’t grab me. Can you please tell me where exactly you’d like me to go in terms of Z, Y, X and X, Y, Z versus grabbing me and trying to pull me one place and then another, and then another. Let’s treat people with disabilities like humans.”
But I guess this is a long-winded way of saying, could you tell us about one of your positive experiences just so that we can kind of… I don’t know, I think that might be helpful for folks traveling over the holidays who may be anxious about the whole ordeal. Of course, we do have negative experiences. No experience in terms of traveling and flying with a disability is going to be perfect, but that doesn’t mean that you’re always going to have bad experiences all the time, even though we have both types, right?
Natalie Alden:
Yeah, and I definitely can. I know that one of my fondest memories was actually on a Southwest airline when they got me. I was down, I was flying by myself, and they got me on the plane and the steward, he actually kneeled down so that he could see me eye to eye. And he asked me, he’s like, “Hey, I just wanted to have a conversation with you and ask you if anything happened to go wrong in the plane, would it be okay if I just grabbed you,” and he was showing me underneath my arms, “and pulled you off the plane if there happens to be an emergency? I just want to make sure that there’s not going to be an issue with that.” And I was so happy about the fact that you actually had somebody who not only was very good about disability etiquette, didn’t just stand and tower over me, but actually kneeled down to my level and then wanted to have a conversation about what was going to make me comfortable getting me off the plane in an emergency.
Of course I told him, I said, “I really don’t care how you get me off the plane as long as you get me off the plane,” but it’s great when you have people that actually want to take that time to make sure that you’re going to be okay. And that particular steward, I made sure, because he was so accommodating during the whole time on the plane, making sure I was taken care of because I was flying by myself, he wanted to make sure that the landing was going to be okay for me, and I actually made sure that when I got off the plane, I found a manager for Southwest and let them know, “Hey, this particular individual went above and beyond. You’ve got ADA, and then you’ve got what is a human reaction to it. We want something that’s more practical. And he did that.”
And I was told that when you do give them those kudos like that, they do get bonuses, so I was really happy to hear that also.
Stephanie Flynt:
Yeah, absolutely. Absolutely. I think it’s so important that when folks are doing a good job, I definitely try to go out of my way when it comes to airlines for folks that are doing a good job to let those airlines know like, “Hey, this is how it should be done. Keep it up.” The fact that that person asked you versus just assuming, I personally would’ve maybe been startled if someone just randomly came over to me and grabbed me out of my seat, tried to get me off a plane, even if it was an emergency, which could be more startling just depending on the circumstance. But the fact that he was willing to talk with you about your needs, and I think that’s just a perfect demonstration about how one size doesn’t fit all. And thankfully he got that, and I’m totally here for that. That’s awesome.
Natalie Alden:
Well, and I think that as a person with a disability, whether I’ve been traveling alone or whether I’ve been traveling with a PCA or family, I always want to make sure that I’m taking a really good active role in what’s going on. And so when I’m being gate-checked, I’m gate-checking my chair, it ends up where I’m letting the stewardess know, or whoever it is that’s out there, that if they have any problems, that this is my phone number. I try to make sure that my PCA puts my chair into the position that I know is going to be the most helpful for the people who are putting my chair onto the plane. And I think that if you try to make sure you have that good communication back and forth, they are going to make sure that they’re taking care of your property better.
So it’s just one of those things that we kind of think that the people doing stuff for us know how to do something better, and they may not, and we should never be too shy or too much, “Oh, well, they’re doing their job,” to take the time to say, “no, I want to make sure you’re doing it correctly.”
I know I had an instance once when I was on one of the planes and my PCA was like, this is before we took off, my PCA is looking out the window and literally tells me that it looks like they’re trying to rip my chair apart in order to get it on the plane. And I immediately was yelling for the stewardess and letting her know, “Hey, that’s a $35,000 piece of equipment that they’re about to break.” And immediately she said, “Hey, everybody’s walking away from your chair.” So they evidently radioed down very quickly and the guy came all the way up, spoke to me about my chair, and then made sure that it was placed on there properly.
But had I not taken the stance of saying, “Hey, wait a minute, I see what you’re doing and you need to do it better…” We need to educate people one at a time, and we need to make sure that we’re doing it in a way where you’re being respectful because I think if you’re not, then they’re not going to listen to you.
Stephanie Flynt:
Yeah, absolutely. I feel like sometimes we can get lost in the customer service shuffle at that point, especially around the holidays. Airlines definitely deal with a lot of angry people around the holiday, angry people in general, but especially around the holidays. And if we can try… And again, I’m not saying that people with disabilities have to be perfect little advocates all the time. When I have 6:00 AM flights, I better have coffee or I am not the happiest person.
But all that to be said, the littlest things, like educating one person and advocating for yourself to one person who may understand because of your advocacy, later on, the littlest things just they make the biggest differences. And that’s something that I always try to tell people, even if it doesn’t seem like it, educating one person, whether it’s an airline attendant or someone at the grocery store about disability etiquette and doing it in a respectful way, if you absolutely can, that really can make such a big difference for other folks down the road
Natalie Alden:
Well, and I’ll give you a thing. I was actually at a layover in between my destination. Hold on a second.
I was actually at a layover in between destinations, and when I had gotten off the plane and they put me into my power chair, I went over to the new place where I was going to be getting onto the new plane, and I made sure I spoke with somebody at the desk and very much was like, “Hey, I just want to make sure you know that I’m here and please let me know if you need me somewhere certain because I know the airport’s really crazy right now.” And she was like, “Oh, no problem, no problem.”
And then probably maybe like 10, 15 minutes later, she came over to me and told me, “Hey, they’re actually going to be delaying this flight and they’re going to make everybody try to get a different flight. I’m letting you know this first so that you can call this number,” and she gave me a phone number and she said, “and they will go ahead and get you onto the next soonest flight.” And so she gave me that information, told me where to go to call before she announced it to everybody else that was sitting there waiting for the same flight.
I do say being a little bit more respectful and trying to be a little proactive really ended up helping me because I was one of the few people that was able to get on a sooner flight, and I only ended up having to wait approximately 45 minutes where some people were having to wait four and five hours. So it is that education and it is being proactive that can really make it where you go from having a bad time flying to an “I’m okay” flying.
Stephanie Flynt:
Absolutely.
Natalie Alden:
And I know that you guys were talking about other forms of transportation. I will say that I have been able to do the Auto Train on Amtrak from Sanford, Florida up to Lorton, Virginia. I really think that it’s that same thing of being able to talk to someone, telling somebody, “This is my disability, this is what I need for assistance.” They ended up getting me into a sleeper car, and it was really a great, great experience for me.
I will tell you, if you are ever doing that and you are able to get the sleeper car, it is very accessible for someone like me. And like I said, I’m a C5 quad. I’m a full transfer. I will say that whoever is going with you, if you have a PCA, they will have to be able to climb up for the bunk bed. But hey, it was a good experience though.
And so I think though, no matter what you’re doing, you really have to make sure that you’re doing a lot of pre-planning. I know a lot of people that don’t have disabilities don’t have to think about those things, and you’re kind of like, “Hey, this is extra,” but at the end of the day, it can make the difference between you having a very good experience or you having a very bad experience no matter what form of transportation you are having.
Stephanie Flynt:
Absolutely. Definitely can save you a lot of heartache, even though it seems like a lot of stuff that you have to do on the backend. But yeah, I definitely would agree with that.
Oh my goodness. Natalie, thank you so much for sharing with us today about your travel experiences, just everyone getting ready for the holidays and traveling home. I know that I personally found them super insightful, and I’m sure that our listeners have also found those experiences insightful as well. So yeah, thank you so, so much for sharing with us today.
Michelle Bishop:
Wow, that was amazing. I am inspired and so excited for the holidays. Why don’t we go ahead and close out this episode with “All I Want for Christmas Is You” because I’ve heard it’s Stephanie’s favorite song and that’s how I’m going to remember that forever?
Stephanie Flynt:
Nope.
Michelle Bishop:
Oh, wait. Before we get to that Stephanie, do you have a holiday-themed joke for us?
Stephanie Flynt:
I mean, I started thinking about it and since Michelle doesn’t like my jokes as much, I’ve decided to do something different for Christmas and give her an early Christmas present. It’s a haiku!
Michelle Bishop:
It’s a haiku? Oh, this is going to be… All right.
Stephanie Flynt:
All right. Everybody needs to get their Starbucks holiday cups. This is very important, very important PSA.
Michelle Bishop:
I’m so worried. Go on.
Stephanie Flynt:
Caffeine is important, necessary for me to function. Drink coffee now, or go caffeinate now.
Man, I messed up my own haiku. I guess I… Oops, oops. Happy holidays, y’all. Sorry I messed up the haiku. Please don’t send us hate mail for that.
Michelle Bishop:
Podcast@NDRN.org. Jack, how can the people find us on social media?
Jack Rosen:
Log off social media. Spend time with your family.
We’ve got a new name, National Disability Radio! But the hosting team is still here, and we aren’t giving up on the puns. And of course since it’s November we are talking all things voting. NDRN’s Voter Engagement Specialist Monica Wiley joins us on this.
Full transcript available at https://www.ndrn.org/resource/ndr-nov23/
Michelle Bishop:
All right. Sorry. Are we ready? You ready for us, Jack?
Jack Rosen:
I started recording already.
Michelle Bishop:
All right. Well, snarky, but all right. Okay, I’ll get started. Hello everyone. And Stephanie, can I get a drum roll real quick? Hit me with a drum roll.
Stephanie Flynt:
I don’t have a drum.
Michelle Bishop:
Oh, no.
Stephanie Flynt:
But I have a dog who wags her tail. Okay [inaudible 00:00:17].
Michelle Bishop:
That works. No one can see it.
Stephanie Flynt:
I can’t see it. Okay.
Michelle Bishop:
Okay. We didn’t prepare. We didn’t prepare. Welcome to the new and improved National Disability Radio, NDR.
Stephanie Flynt:
Not to be confused with NPR.
Michelle Bishop:
We are going to get sued for this. So welcome to NDR. I am one of your hosts. Michelle Bishop, the voter access and engagement manager at NDRN.
Stephanie Flynt:
And I’m Stephanie Flynt, Public Policy Analyst at NDRN.
Michelle Bishop:
Raquel Rosa is doing a lot better. I’m sure you heard she was sick last time, but her voice is still taking a little bit of a hit. So she’s still on break this month. We miss you, Raquel. Get better. Have all the cough drops or slushies. Eat slushies instead. That sounds better.
Stephanie Flynt:
And hot tea.
Michelle Bishop:
What? Oh, hot tea. That’s right. Hot tea sounds more responsible than a slushy, but one sounds more fun, so you make your choice, Raquel. And of course, I would never, ever forget to introduce our producer and showrunner, Jack Rosen. Jack, introduce yourself to people.
Jack Rosen:
Hi, you all. It is producer Jack Rosen here. Michelle, do you want to tell the people what today’s episode is about?
Michelle Bishop:
So today, we are like one year out from, you might’ve heard this, there’s going to be a little election happening for the president of the United States in 2024. Just that. Nothing huge and really important that we need to start talking about. So today, we’re going to start talking about getting ready for the 2024 election and what you can be doing to make sure you and all of your community are ready to go and vote.
Our guests is actually our very own voter engagement specialist at NDRN, Monica Wiley. Monica has over 15 years of experience as an advisor on disability and organizational and relationship management in the public and private sector, working with state government and federal organizations, including the White House on protecting and advancing the rights of people with disabilities and other represented communities.
She comes to us as someone who is passionate about the vote and working on NDRN’s role in directly outreaching to and engaging all types of voters with disabilities from the broad diverse disability community. So Monica, welcome. Thank you so much for joining us this month. We’re so excited to have you.
Monica Wiley:
Thank you for having me. I’m glad to be here.
Michelle Bishop:
First, to get us started, can you just tell us why are you so passionate about voting?
Monica Wiley:
Well, again, thank you so much for having me. I’m truly delighted to be here and to talk about this. This is very important to me and I thank you for the question.
The reason why I am so passionate about voting, it comes to me in three different ways. And the first reason is I’m a person with a physical disability. I walk with a cane and I use a travel scooter for long distance walking and it was caused by a drunk driver, tractor trailer accident that I was involved in at the age of nine that killed my entire family. And as a result of that, I now have a disability, so I am in the disability community.
When I graduated from college, I was open to or became aware of so many challenges and barriers to people with disabilities in terms of employment, access, socially, everything. And for me, that spoke a lot of volumes to me as a woman, as a Black woman, because as a Black woman, the rights of voting is very, very important to my community and definitely important to women, but especially to my community. And I come from a background where voting, we were disenfranchised by voting because of us being African-Americans in the country.
And so I stand on the shoulders of so many people that have paved the way to make sure that we have voting rights as African-Americans in the community. So that is one reason. So I stand on the shoulders of individuals like my shero, Fannie Lou Hamer, and some of the others that are my shero, Judith Heumann, which I will probably talk about a little bit later. And so many others that have really just made a way for us in terms of one being Black and two being a person with a disability, which leads to my second reason that fuels my passion for voting.
My second reason is the access. There are so many barriers to voting and my community, our community, tends to be… we’re considered as afterthoughts. We’re not considered as individuals that engage in voting, that are knowledgeable about voting. And that is just a misconceived notion about my community. But the reason why that notion is there is because of so many of the barriers to voting.
And so I wake up every day wondering what do I need to do? How can I be a vehicle, a beacon for paving the way for greater access to the voter ballot, but then also making sure that the crosses of the community is educated, that they’re aware, and that they can be a part of the political process, a part of exercising their voice at the voting ballot. So that is the second reason.
Then the third reason is a person that I just mentioned, which is Judith Heumann and how she didn’t let anything stop her. She was a fierce woman, a fierce leader. And I share those same attributes, those same qualities, those same desires, that I’m not going to let anyone, not any institution, any law, or any of these so-called made up policies to prevent me and my community from having the ability to vote.
So those are the three reasons why I am so passionate and so dedicated to making sure that we have full access to the voting ballot and especially Blacks and Black individuals with disabilities to make sure that we are educated, we are knowledgeable, and that we’re doing everything that we can to exercise our voice in our vote at the voting ballot.
Jack Rosen:
And Monica, I’m wondering how can the organizations, especially non disability focused organizations, do more to help activate our voters?
Monica Wiley:
I love this question. Thank you for this question. I think it’s several ways and several reasons why we should definitely be partnering and building coalitions outside of our community. Well, for one, if you are a young person with a disability who just graduated from college and is ready to make meaningful impact, meaningful impact and policy, meaningful impact and laws, meaningful impact and community engagement, you may be often wondering, “Well, what do I need to do? How should I start this? What avenues are out here for me to be able to do this?”
I was one of those individuals, and the first thing I would say is that I would recommend, one, that a person with a disability attends events that are not disability focused. So we need to have more of a presence in other types of events, other community engagement events, other community related events. Also connect with individuals and different groups that you are involved in, making sure that you talk about people with disabilities and talk about how it is so important for other organizations to look at us, to invest in us.
And also too, I think one of the things that I tend to use in terms of building that and establishing those bridges and those partnerships and those connections, is making sure that when I am attending different events and when I am talking to individuals, I make sure that they see two things. One is, of course, yes, you do see the disability because mine is physical, of course. But you see the disability and even if you have a non-visible disability, because I believe one in four have non-visible disabilities, make sure that you talk about it, be proud of it. Disability isn’t abnormal, disability is normal. It is very normal. So make sure that they understand that, that they see that.
So one, that they recognize that you are a proud person with the disability, and then secondly, talk about that disability, talk about how you became disabled, whether you were disabled by… it was developmental, or whether it was by tragedy. But then also then make sure that because they’re still wondering, “Okay, well, what can I do?” Or they may not even have that question. They may just be wondering, “Where’s this conversation going?”
And so then that’s when you will want to make sure that you build on some of the commonalities. We’re both at this event, obviously we have an attraction to this type of work or whatever the subject is or whatever the reason for the event is. So build on that and make them see that there’s some commonalities with people with disabilities and those that are non-disabled. But then also let them see the differences, the challenges, the barriers, and appeal to that, so they can understand and really connect with that humanitarian spirit that they have.
And that’s how you build and that’s how you become engaged and vice versa. And then that makes them want to say, “You know what? I didn’t think of that. That makes great sense. And this is a community that we should be partnering with. This is a community that we should be involved with. We do care. You are a part of the population, you’re a part of the voting block, and you should have access and you should have resources, and you should have individuals that want to help build and support this.”
So that’s what I would say would be a great way, is to make sure that you are out there and that you are visible and that you’re seen. Be proud of what your disability is or how you have the disability. Show the differences between that person or your organization and the organization that you represent, but then also show where the commonalities are and then build on that. And if you’re a person that is new to this and it’s something that you want to do, then build on who you are as a person. Show who you are as a person. Show that confidence and that desire. And then again, you make sure that you show that the connections that you have and then also show those differences. And then making sure that from that point, how you can connect to build greater partnership and be more effective.
So that’s what I would say would be the great way to building this and to make those connections and those partnerships. And trust me, when you do that, that opens the door for so many different resources and opportunities. And again, just forming that partnership and building those relationships, because relationships are definitely key.
Stephanie Flynt:
Oh my goodness. Thank you so much, Monica. We definitely appreciate you for giving us so much insight. And honestly, I don’t think I’m alone in the fact that I genuinely wish that I could be like you when I grow up. So I’m going to continue to aim for this goal. But all that to be said, I know that you briefly touched on this in your answer to the previous question, but would love to hear your advice or your insight on individuals who want to take the leap into helping to organize, helping to get individuals with disabilities, and individuals in disabilities who intersect with multi marginalized communities. How can we support people in terms of organizing to help them get out to vote?
Monica Wiley:
I like that. I like that question. Thank you so much Stephanie, and I really, really appreciate your question. I think one is looking at yourself, obviously, you want to be a part of this work, a part of this effort because you recognize that the fabric of voting and making sure that voting is empowering and that it’s effective and it’s why we are here is to exercise that vote and to make sure that we are speaking up for how we want our lives to be governed, how we want to live, and then how we want to make sure that we embrace everyone from different walks of life. And that’s what that’s about. That’s what humanity is about. But I don’t want to veer off because I can tend to veer off and go a little bit into a rabbit hole.
But I think what I would do is, everyone has some type of leadership ability within their selves. And I think that when we look at the world leadership, we automatically think of, “Oh, I need to be CEO of this organization or head of this organization.” And while you may have that aspiration, and that is something that you are looking forward to, I think in the beginning you can be a leader within your own self by showing up and then showing how you are creating a pipeline for others to be able to use that to then build the next set of leaders and the next set of individuals that have a desire to really make meaningful impact in the world, not just in their respective communities, but just in the world, in the country that we live in.
And so what I would typically say is that I would say when you’re attending these events, make sure that you’re talking to individuals that represent different areas within engagement, different areas within nonprofit, different areas within corporate America, and be taking mental notes, take mental notes. And even if you can’t take mental notes, pull out your phone and take some notes and say, “If you don’t mind, I would like to capture some of what we’re saying here because I’m really dedicated to this. This is something that I’m excited about.”
And when you partner with individuals, when you’re connecting with organizations and people, you’re learning from each other. Everyone doesn’t know everything. And so I can benefit from that person, but that person can also benefit from me. That’s a part of building, that’s a part of growing, that’s also a part of just making a pipeline and an avenue for others to be able to use that and build upon it further so that we can, I would say, reestablish love. I think there’s a lack of love in this country, a lack of love just in the world, period. And if we have that desire to really show love to humanity, then what we should be trying to do is look at some of the qualities within ourselves and the desires within ourselves and bring that to some different events.
Make sure that you are connected to individuals outside of your community, to individuals… So for instance, I have good friends that are in the Asian community, good friends that’s in LGBTIQ+ community. I have friends that are Muslims. I have friends that are in various affinity groups. And then within those affinity groups, they’re connected to different sectors. They’re connected to the union, they’re connected to corporate America, they’re connected to sports, they’re connected to the art world.
And so when you are attending these different events, make sure that you connect with individuals at these events, but then also make sure that you’re connected with individuals that represent different areas within these various sectors and within the events that you are attending. And again, make sure that you take some notes, you write down what you’re here, what you can find beneficial, and that may even be appealing to some people.
I’ve done that before myself, and I’ve had a couple of people say, “Well, you’re writing notes as if you’re in school.” And I said, “Well, you know what? Every event that I attend, every conversation I’m in, it is school, because I’m learning from you and you’re learning from me and that is the best way that we can do… the best way that we can forge a relationship and a partnership and build on this to make an impact for individuals, and make an impact in the world, and make an impact in voting and the work that we do, and the work that we aspire to do.”
So that’s the recommendations that I would give anybody, is to make sure that you are always willing to learn. You’re always open-minded, always willing to learn, be confident and comfortable with what you bring to the table. Even if you don’t have as much experience as everyone else, you have experiences, you have life experiences, you have experiences from college, you have experiences from your friends, you have experiences from… I don’t know if you go to church, from your church, you have something to bring that they can benefit from and you could benefit from.
So build on that and make sure that you are connecting with individuals that represent various positions within various sectors and within community engagement. So I hope that answers your question.
Michelle Bishop:
Monica. Oh my gosh. We appreciate so much your expertise, your fiery personality and your passion for these issues and for the vote, it’s amazing. We are about a year out from this election. I’m already feeling inspired. I echo Stephanie’s thoughts that I want to be you when I grow up. Although I think we all agree at this point. It is unlikely that I’m ever going to grow up, but I still strive for it every day.
Monica, thank you so much for joining us and I bet we’re going to bother you again before this year is out to come talk to us about the election.
Monica Wiley:
No. Thank you. It is been my pleasure. This has been very rewarding. This is something that I love to talk about. As you are aware, I wake up every day wondering, what can I do? What do I need to be doing? What are some of the qualities within myself that I am not utilizing that I should be utilizing to make this impact for my community, for the cross disability community, even for my peers, for the people that I work for, the organization that I work for? What do I need to be doing? And how can that translate into something that’s meaningful and impactful?
So thank you so much for having me. I’ve enjoyed this. I look forward to coming back and I appreciate this. So thank you very much.
Michelle Bishop:
Thanks so much, Monica. Get back to saving the world. And while you do that, we’ll be doing something equally as important. Stephanie, do you have a joke for us this month?
Stephanie Flynt:
I always have a joke, although I really didn’t want to derail us with it. I don’t want to derail us. I don’t want us to get off track.
Michelle Bishop:
This is train puns, isn’t it? Are you doing train puns? I’m so worried about this joke.
Stephanie Flynt:
I don’t know, I don’t know, but I’m trying not to leave the station, if you know what I’m saying, but-
Michelle Bishop:
Oh no. All right.
Stephanie Flynt:
I don’t know if I have a joke this month, but I have more of a question.
Michelle Bishop:
Okay, I’m ready. Jack, are you ready?
Stephanie Flynt:
How do trains indicate when they’re sick?
Jack Rosen:
I don’t know. How?
Michelle Bishop:
Does that have something to do with the choo-choo noise?
Stephanie Flynt:
A choo-choo!
Michelle Bishop:
Oh no. Oh, how many in a row is this that I’ve gotten?
Stephanie Flynt:
I don’t know, but I’ve been doing train puns all week, so you all pray for Jack and Michelle and everyone else at NDRN. They’ve been having to deal with my train puns.
Michelle Bishop:
We had one conversation about trains and we’ve been hearing train puns all week. It is true. And I’m pretty sure I’ve gotten five of these in a row now. I’m going to have to talk to my therapist about that, so.
Stephanie Flynt:
So I’m sorry about the way I’m conducting myself these days. I’m done.
Michelle Bishop:
It just never runs out. Jack, tell the people [inaudible 00:19:41]-
Stephanie Flynt:
Keep chugging along. Okay, I’m done now.
Michelle Bishop:
Tell the people where they can find us on social media.
Jack Rosen:
You can follow us on Twitter, Instagram, Facebook, and LinkedIn, and also Threads, I guess. I did post there the other day, so you can follow us there and you can email us @podcastatndrn.org. Until next time, folks-
Michelle Bishop:
And Threads is totally a thing that I know exists because I’m hip.
Stephanie Flynt:
I’m here for that.
Jack Rosen:
We’re still not on TikTok though. See you.
We open up the vault to revisit guest host Amy Scherer’s previous interview with Liz Weintraub, where Liz discussed her journey from a sheltered workshop to a Senior Advocacy Specialist on the Public Policy team at the Association of University Centers on Disabilities. Then, we go back to the future, as Stephanie tells Jack and Michelle about White Cane Awareness Day.
Check out Liz’s video series Tuesdays with Liz https://www.youtube.com/playlist?list=PLEHWL7i0kECV8GSORs56oK7SP7GXHorOB
Learn more about White Cane Awareness Day https://nfb.org/programs-services/blind-equality-achievement-month/white-cane-awareness-day
Full transcript of this episode is available at https://www.ndrn.org/resource/panda-pod-october-23/
Michelle Bishop:
Hey everyone. Welcome back to NDRN’s podcast. And we have a really exciting month for you this month. But before we get to all of that goodness, I am Michelle Bishop. I’m the voter access and engagement manager at NDRN and one third of your amazing hosting team.
Stephanie Flynt:
And I’m Stephanie Flint, public policy analyst here at NDRN. And I am, I guess you could say, one fourth because we can’t forget Jack, Michelle. Why do you keep forgetting him?
Michelle Bishop:
No, I mean, why’d you have to steal my thunder? Because I was actually going to introduce him this month. This was going to be the first month, and now it looks like I’m a [inaudible 00:00:41].
Stephanie Flynt:
But you forgot Raquel. Raquel is unfortunately not going to be with us this month, but we cannot forget people even if they’re not around.
Michelle Bishop:
Yeah, I was going to.
Stephanie Flynt:
No hosts left behind.
Michelle Bishop:
Don’t send angry emails to podcast@ndrn.org. I didn’t forget about Raquel or Jack. Poor Raquel is out sick this month. Raquel, we love you. Get better.
Stephanie Flynt:
Yes.
Michelle Bishop:
I don’t know if this podcast is going to help you get better, so maybe listen to this when you come back and just eat soup and drink lots of water.
Stephanie Flynt:
Or beverage of choice and food of choice, whatever. Yeah.
Michelle Bishop:
No judgment. This is a judgment-
Stephanie Flynt:
No judgment.
Michelle Bishop:
And then now I was going to introduce our producer, Jack, but Stephanie already put it out there. So hi, Jack. We’re so happy you’re here with us this month. If you want to introduce yourself to the people.
Jack Rosen:
Thank you for the warm welcome. It’s always great to be here. This is producer Jack Rosen, and this month we are going to do things a little differently. We have a throwback episode. Michelle, you want to tell people what it’s about?
Michelle Bishop:
Whoop whoop. Yes. We’re pulling from the vault this month. This month is actually National Disability Employment Awareness Month, one of the most important months of the year. Well, I think November is the most important because that’s election day. But the other most important month of the year is Disability Employment Month. And we actually have an amazing interview we pulled from the vault with Liz Weintraub talking all about disability and employment. So please enjoy.
Jack Rosen:
And if you’ve already heard that one before, because you listened to the podcast on your way to work every day, and we only have 15 episodes, so you’re like, “Wow, I’ve heard that episode literally 50 times.” Don’t worry. We have some new content at the end. Stephanie is going to be telling us all about White Cane Day, so enjoy the episode folks.
Amy Scherer:
Liz, you’re always so willing to help us out in any way that we ask you to, and I really, really appreciate that, so.
Liz Weintraub:
Oh, thank you.
Amy Scherer:
We’re doing this in honor of the National Disability Employment Awareness Month and your journey from going from a shelter workshop to a competitive integrated employment position, and not a lot of people have done that. So you’re a great example that can hopefully be used to help others. But let’s go ahead and start at the beginning.
Liz Weintraub:
Okay.
Amy Scherer:
When you came out of high school, what was the start of your employment journey at that point?
Liz Weintraub:
Okay. I graduated from boarding school for people with intellectual disability. It was actually the best school of my life. And you might be saying why? Because it was not an inclusive environment, the kind of environment that I fight for every day, but it was a school that I felt like I wasn’t bullied and I could have friends and I could have… My friends gave me the respect that I deserve. So it was after I graduated the school, the headmaster, talked to the parents about what the next steps, and they recommended to my parents that I should go into a private institution.
Amy Scherer:
Was that a surprise to you, given that you had a positive experience at the school and had really enjoyed that? Were you expecting the next step to be potentially a private institution?
Liz Weintraub:
No, and I was very upset because I have thought more about this since I graduated. When I graduated, I probably didn’t think anything of it. I was just told to go there and I went there. But since I became an advocate, I have thought a lot about it. I was very upset because my friends from that school who I went to school… Some of my friends were in my classes. Some of them I lived with. They all went to college. They went to a college program for people with disability. But I went to this private institution, and my parents didn’t think anything about it until I got there. And it was actually kind of interesting because I stayed… After the second day, I called home. I remember calling home and crying and saying to my parents, “I don’t like this.” And they said, “Well, we’re working on something.” And speed up, after about a year, maybe two years, my parents begged me to go home and actually live where I’m living now and where I’m getting the support from the agency that I’m getting right now.
Amy Scherer:
Fantastic. So you pretty much spent about two years, it sounds like, in the institution and-
Liz Weintraub:
No, nine years.
Amy Scherer:
Nine years. Oh, nine years. Okay. Nine years in the institution.
Liz Weintraub:
And if you wait a minute, I’ll tell you why.
Amy Scherer:
Okay, sure.
Liz Weintraub:
I stayed there because even though my parents begged me to come home, I really believe that if I listened to my parents, I would never be who I am today. I would never have been able to speak up for myself. I would never have been able to make my own decisions because I would just do whatever mom and dad wanted me to give. They told me to go to the institution, I went. If they told me to go home, if I listened to them, I would never have learned how to stand up for myself.
Amy Scherer:
That’s a great lesson for all of us to hear. So you, basically, it sounds like, came to the decision on your own outside of what your parents were suggesting that you needed to get in a different situation. Is that correct?
Liz Weintraub:
Yeah.
Amy Scherer:
So I believe you spent some time in a sheltered workshop. Was that while you were in the institution or did that happen after you came out?
Liz Weintraub:
No, when I was living in an institution. I worked in two places. I worked in a place where I did kind of workshop. I mean, worksheets, like math sheets that you would get when you were a kid. And I would do office type of work, and it just was a horrible experience. And then-
Amy Scherer:
Was that in a warehouse situation or were you in an office? Do you remember anything about the environment that you were in when you were doing that?
Liz Weintraub:
Office.
Amy Scherer:
Okay. It was in an office, okay.
Liz Weintraub:
And then I graduated from that program, but I was still in the same institution. And I worked in a shopper’s guide where you had papers. They used stuff for supermarkets that you get at the supermarket.
Amy Scherer:
Right, like the coupons or the flyers, that type of thing?
Liz Weintraub:
Yes. And there was a table, probably more of a typical workshop that we know of where there was probably seven or eight people from the institution and two staff people. It was just an awful experience because it wasn’t in a warehouse like Costco or those kind of stores. Sam’s warehouse for buying things.
Amy Scherer:
And it was not a job that you particularly enjoyed doing, it sounds like.
Liz Weintraub:
No. No.
Amy Scherer:
So tell me what happened next after that in terms of your employment journey.
Liz Weintraub:
Well, I got out of the institution. The way I got out of the workshop and got into a real job because I worked in a library for the rest of the time that I was in the institution. I had a library job outside of the institution that I just adore. It was probably one of the best job, beside my job today, that I had.
Amy Scherer:
And did the people that were working with you at the institution, did they help you get that library job?
Liz Weintraub:
Yes. Yes.
Amy Scherer:
Okay, great.
Liz Weintraub:
But the way I got out of the institution was I faked seizures.
Amy Scherer:
Wow.
Liz Weintraub:
I faked seizures and I would rock and rock and rock and rock and rock, and I would run away when I got upset. I studied people when they had seizures, and I could notice how they were treating… They had seizures, and I don’t mean to make fun of people because I know seizures are really serious things, but that’s the only way I knew that I could have people stop and listen.
Amy Scherer:
Yeah, wow. Did that then lead to a change where you were able to be in a different circumstance?
Liz Weintraub:
Yeah. I still was living in that institution because my parents didn’t think anything else that I should move. And so I went to a conference one day, and a national conference, and two of my best friends who happened, they were talking to some people from Massachusetts. Again, Massachusetts was at that time just starting to work on self-advocacy, and they wanted to hire someone to help them with self-advocacy. Two of my friends, so two people from Massachusetts saw me at this conference and offered me a job. My main job was to work on quality assurance.
Amy Scherer:
Fantastic.
Liz Weintraub:
And they had a survey that they give to people that live… To providers to interview people, and then they did some trainings. And one of the other interesting part of that story is… And I learned this, a very important lesson. Is I kept on saying to people in my interview before I got the job, “I want to be treated just like everyone else.” The only issue in the training department was at the institution. I said to my friend, I said, “Why am I in the institution? Why am I in the institution? I don’t want to be in the institution. I was in the institution. I got out of the institution.” And she said, “You want to be treated just like everyone else, so you’re going to be treated like everyone else. And that’s where the training department was.” I wanted to do more traveling and more seeing the world, and I also wanted to live closer to mom and dad.
I left the job. I went back to the conference where I found my job in Massachusetts. And somebody recommended a job called the Counseling Quality Leadership. And I stayed there for 16 years where I did survey work and I also did some training work, and it was just a great job.
Amy Scherer:
Great. And so that sounds like that built directly on what you had already been doing with the survey work and the quality assurance. Where was this job located that you stayed at for 16 years?
Liz Weintraub:
The headquarter was in Baltimore, but people were all over the country. They wanted me to move from Massachusetts to Baltimore, and as I said, I wanted to live closer to mom and dad. But once I met, at that time, my boyfriend, now my husband, and he was living in the Rockville area where we live today. So I begged and begged and begged my supervisor if I could work from home, just like everyone else. And I would travel when I needed to. And they agreed to. And then I got bored about doing that. So-
Amy Scherer:
Well, 16 years is a long time, so you didn’t get bored too quickly, but then you just got to a point where you were ready to move on to the next step.
Liz Weintraub:
Yeah. And then I found my job at AUCD.
Amy Scherer:
That is great. So tell us a little bit about how you found your job at AUCD.
Liz Weintraub:
AUCD was doing a project, the Self-Advocacy Summit, and AUCD knew that they could not… It was actually a project that ACL was doing about [inaudible 00:15:24], and AUCD knew that they could not do that work without a self-advocate, so they hired me.
Amy Scherer:
That is fantastic. And so what were your job responsibilities when they hired you? What did you have to do each day?
Liz Weintraub:
I was doing part-time work, so I was working for CQO and AUCD, but what I was doing was I helped them set webinars. I went to all the summits. After all the summits were over, I wrote their reports. I helped them write a plain language report. After that was all done, I had a vision of doing a video show.
Amy Scherer:
Well, and let’s talk a little bit about Tuesdays with Liz.
Liz Weintraub:
Tuesdays with Liz has been around for four years. It’s a YouTube show where I make policy in accessible and fun ways for people to understand. And my idea has always been, and it began with my idea, maybe it was a selfish idea, but I think everything begins with you in some ways. When I was little, I sat at the table and the dining room table with all my family, and I never understood what a policy was. I never understood what home community-based services was. I never understood what this was. I never understood what that was. So I wanted to make sure, and when I had the opportunity right after the summit, to develop a YouTube show that people could understand what a policy was so they could go up to the hill, whether it was here in Annapolis and Maryland or in DC to talk about, “Okay, I know what the Able Act is. I know what Transformative Competitive Employment Act is, and I know-”
Amy Scherer:
Exactly.
Liz Weintraub:
Yeah.
Amy Scherer:
So it sounds like your goal, and it sounds like your goal is still today, that you want to make policy accessible and understandable to everybody so that it’s clear what policies exist today and what type of advocacy needs to be done. Is that what your goal is?
Liz Weintraub:
Yes.
Amy Scherer:
Fantastic.
Liz Weintraub:
And we have even done that with our newsletter, called the Disability Policy News. There’s a piece of it that I edit every week for plain language, and some of the words can’t be changed because it’s part of the law. Part of words are the way it is, but that way we have a plain language that we can talk about it.
Amy Scherer:
And can you kind of say why plain language is so important for people who may not know about plain language or why we strive to make things in plain language? Why is that important to you and to others?
Liz Weintraub:
Great question. Thank you. I think plain language is important because it helps people belong to the conversation. It’s help people to understand that they can contribute. And if there’s no plain language… And there’s so many times I’ve gone to a meeting and people talk in big words. I don’t mean 17 letters. I mean big words that I don’t understand. Sometimes there’s 17 letters, but sometimes they’re just big words. And if I can’t understand it, I feel like I want to cry because I’m not part of the conversation and I can’t be part of the conversation and I don’t want to be part of the conversation.
Amy Scherer:
That’s a very important point. And if people want to find Tuesdays with Liz, can they search on YouTube or how would they find your show?
Liz Weintraub:
You can go to aucd.org or you can google Tuesdays with Liz.
Amy Scherer:
Fantastic. And do you actually have input into the people that you’re going to interview? Do you have to come up with the questions?
Liz Weintraub:
Yes, yes. How we do it is that the team of us, the director of policy, the producer, and myself. And that’s why we need to wait for the producer. But as I said, we’re still doing past episodes, mostly on voting, because voting is important these days.
Amy Scherer:
Absolutely.
Liz Weintraub:
We come up with who we think would be good people to interview, whether it’s a topic that is in the news, whether it’s a topic that AUCD is working on, or whether it’s just a topic that I think that people might be interested in.
Amy Scherer:
That sounds fantastic. And is that sort of the main part of your job now at AUCD as well as helping to make sure the documents are in plain language like we talked about? Is that in the podcast, your two main responsibilities at this point?
Liz Weintraub:
Yes. And I should say the questions are all probably 90% my ideas because it’s what I’m interested in. And sometimes my supervisor, the director of public policy, Rylin Rodgers, will suggest things.
Amy Scherer:
Great. Great. Do you have any particular accommodations for your disability when you’re working at AUCD? Do they set things up in a different way, or is there anything that makes it easier for you to be able to do your job well that you can share?
Liz Weintraub:
Well, I think we have tried a voice recognition for me to learn how to type faster because I know that my mother would be rolling in her grave, but I still type like a hand pack typist. It’s just hard for me to use two hands. It’s really important that I feel very supported in my job. And I’ll give you example, and this is so wonderful. AUCD has changed emails, servers, and I don’t understand what it’s called. But anyway, and I got frustrated. I didn’t know how to work things. I didn’t know what it looked like. And I got scared. And the web person at work walked me through it, and it was just wonderful. And now, I’m happy and I can do things myself. And yes, it’s nice to know that I have a [inaudible 00:23:31] with my husband.
Amy Scherer:
And the other thing that seems to run through your story as you have recounted it to us today, is that you’ve had good communication with your supervisors.
Liz Weintraub:
Even people above your supervisor. If there’s a problem with your supervisor, and this has never happened to me, but if I ever had a problem with my supervisor, people have often… People have said to all of us, “You can talk to the ED of AUCD.” Because I could have a problem with my supervisor. I think it’s also important that I don’t… People with disability need to be accountable for their job and what they say and they do. And if we mess up, okay, we mess up, but we can’t say, “Oh yeah, you’re a person with a disability. We’ll overlook that.”
Amy Scherer:
That is a very important point. Very important.
Liz Weintraub:
Treat me just like everyone else, like me going into the institution. Did I like going into the institution? No, but that’s where the training department was and that’s how being treated just like everyone else. And then the other thing I’ll say is about giving me real work to do, not busy work I’m doing at AUCD. I’m doing real work. I’m contributing. I think I basically said it, but I’ll say it to us. Nothing about us without us. And that means if there’s something involving me or my friends, I should be at that table. Not me personally. Well, maybe me personally-
Amy Scherer:
That’d be fine too.
Liz Weintraub:
Yeah. But other people? And then all means that we all need to be included.
Amy Scherer:
That is perfect way to end this conversation. I really enjoyed spending the time with you today, Liz, and I’m so glad that we’re able to share your story as widely as possible.
Liz Weintraub:
Okay, thank you. Be safe and happy and play enough. Goodbye.
Jack Rosen:
Oh, wow. That was such a great episode with Liz. Interesting to listen to some of the podcasts before I became the producer with the old hosting team.
Michelle Bishop:
I was still here, actually. I’m pretty sure I’m the only person who is an OG from the old podcast, but we remain huge fans of Liz Weintraub. Liz, thank you so much.
Jack Rosen:
Producers note. That was actually not the old hosting team. It was staff attorney, Amy Sheer. Amy, thank you for doing our work this month. All right, back to the show.
Amy Scherer:
Yes, absolutely. Absolutely. It’s always really good to kind of listen back on different perspectives and especially around this time of year when it comes to celebrating in deem, as a lot of people call it. So yeah, definitely a really good interview that of course offers different perspectives. And Liz is just such an incredible human. I feel like we learn something new every single time we chat with her or listen to different stories that she has. And so definitely love. I’m so glad that you guys got to hear her perspective this month and some of you getting to hear that as an encore this month.
Michelle Bishop:
Things we’ve learned so far in this episode, we are Liz Weintraub fan girls, and cool kids call it envying. Okay. So Stephanie, take it away and tell us what exactly is White Cane Day. What do we need to know?
Stephanie Flynt:
Yeah, thank you so much. Super excited to spotlight White Cane Safety Day. So White Cane Safety Day has actually been a thing since October 15th of 1964. There was a joint congressional resolution in 1964, and it was signed by Linda B. Johnson to proclaim that White Cane Safety Day be honored on October 15th to essentially create awareness around the white cane. Now, the white cane, a lot of people see it as a symbol of a blind person, but the way that blind people see it, and maybe I shouldn’t speak for all blind people, right? But I can tell you that the folks in my blind friend group, we all see it as a symbol of independence, right? It’s a way that we are able to go various places. It helps us detect obstacles, it ensures our safety. The first white cane law, believe it or not, blind people were not always “allowed”, quote, unquote, or given the right, rather, to travel on our own.
And the first white cane law was actually passed in the 1930s. And since then, thankfully, all states now have some reiteration of a white cane law that essentially gives blind people the freedom to travel, but also to… Essentially, the white cane law makes it to where motorists must yield to blind pedestrians when it comes to traffic and crossing streets and those types of things. A lot of the time, particularly when it comes to hybrid cars, sometimes it used to be harder to tell. Thankfully, we have passed the Pedestrian Safety Enhancement Act back in 2011 where all cars have to make some sort of noise, including the hybrid ones. But for a while, that definitely came in handy when the cars were supposed to yield to us, so to speak. So all that to be said, we do really see that as a symbol of independence.
It’s been super helpful along the way. And believe it or not, these laws actually also extend to guide dogs. Something that’s not as well known. Some people use different versions of the white cane. Some people have red tips on the bottom. And a lot of people, that’s probably the most customary white cane that you see a white cane with a red tip. Not everybody’s going to have a red tip at the bottom of their white cane. Mine actually does not. So different people use different versions created by different individuals. So there are of course the straight white canes. There are some that fold. There are some that telescope. Just various ones across the board to kind of help individuals get a feel of what they would like to get. And what I mean by that is some white canes, at least in my experience, I prefer a lighter white cane.
And the reason that I prefer a cane that’s lighter in my hand is because I feel like I get more feedback. Some people prefer a cane that’s a little bit more heavier or a little bit heavier because canes are more… The argument is that the canes are more durable that way, but everybody kind of has… Different blind people decide to use whatever mobility device is going to best fit or meet their needs rather. Some individuals use canes, some individuals use guide dogs, but either way, the white cane goes beyond just the white cane. It continues to serve as a level of independence to this day. So I know that was kind of rambly, but super, super excited that I’m able to kind of spotlight that.
Michelle Bishop:
Well, very cool, Stephanie, thanks for sharing that with us. And I assume our listeners to the podcast know that you are blind because we do frequently reference Nala, everyone’s favorite service dog, who is a frequent guest, actually, on NDRN social media accounts. So we have to go to this next, don’t we? I think we do. There’s no getting out of this. Stephanie, do you have a joke this month?
Stephanie Flynt:
I do, but I also have a statement first.
Michelle Bishop:
Okay. I’m scared. Yes.
Stephanie Flynt:
So before we started recording, I told Michelle about the origin of my joke and y’all, she said she was so excited. I know it’s not on recording, but it’s here. It happened. Michelle likes my jokes.
Michelle Bishop:
You have no proof. You have no proof that I ever said that. We were not recording, and I will not stand for this kind of slander.
Stephanie Flynt:
Anyway. Okay. This really isn’t as much of a joke as it is a question because I was doing some digging on Google just regarding Halloween stuff in general. And then, you know how Google does these suggested questions that come up? So one of the suggested questions actually was what do witches eat on their bagels? And of course I clicked on it because I’m like, “What does this mean? Is this some new children’s book that I don’t know of?” But anyway, what do y’all think the answer to that question was?
Jack Rosen:
What do witches eat on their bagels?
Stephanie Flynt:
Yes. Also, why are people googling that? Why is it so googled that that question comes up whenever you’re trying to google Halloween costumes for your dog? I don’t understand.
Michelle Bishop:
I’m trying to think of something witchy, but it could also just be scream cheese.
Stephanie Flynt:
It is scream cheese.
Michelle Bishop:
Oh no.
Stephanie Flynt:
Michelle is two for two.
Michelle Bishop:
Oh, I’m starting to know the answer to too many of these. Oh no, there actually was a third I knew the answer to, but I couldn’t unmute in time. So there are three recently that I have known the answer to.
Stephanie Flynt:
I swear I don’t prep Michelle in advance to know the answer to these jokes.
Michelle Bishop:
She doesn’t. And Michelle is always a little disappointed in herself.
Stephanie Flynt:
I don’t know, maybe you’re the one who googled that question and it came up.
Michelle Bishop:
I googled it at the [inaudible 00:33:28] on everyone’s Google.
Stephanie Flynt:
Yes.
Michelle Bishop:
Well, the people did need to know what witches put on their bagels. That’s a given.
Stephanie Flynt:
I mean, team butter on my bagels. I don’t like cream cheese, but that’s just me.
Jack Rosen:
I’m with Stephanie on this one. And if you’d like to keep up with us, you can follow us on Twitter, Facebook, LinkedIn, and Instagram. And you can reach out to the podcast at podcast@ndrn.org. Until next time.
Stephanie Flynt:
It’s X now.
Michelle Bishop:
Happy ending, everyone. Happy Halloween, and Raquel, we miss you. Get better soon.
Stephanie Flynt:
Bye.
On this episode, the gang sits down with Julie Salih-Worth to talk about her experiences as a teacher with disabilities and how the education system could do more to meet the needs of students and educators with disabilities alike. Then we’re joined by Allyson Matthews, a student who is advocating for herself in the IEP process, and her mother Melisa.
Full transcript available at https://www.ndrn.org/resource/panda-pod-september-23/
Michelle Bishop:
Hey everyone, welcome back to our podcast. I am one of your lovely hosts, Michelle Bishop, Voter Access and Engagement Manager at NDRN.
Stephanie Flynt:
And I’m Stephanie Flynt, one of our public policy analysts at NDRN. And I have not had enough coffee this morning, because I managed to spill it all over myself. It’s been one of those days, but things are going to get better.
Michelle Bishop:
Well, everyone prefers that over Stephanie having too much coffee.
Stephanie Flynt:
Except for Stephanie.
Michelle Bishop:
Stephanie with a lot of coffee is a lot. Sorry, Raquel, take it away.
Raquel Rosa:
Hey everyone, this is Raquel, I am the Community Relations Specialist at NDRN, and I am super excited about today’s episode.
Michelle Bishop:
This is a big one, because it’s September, so this is our back to school special, love it. Who are the guests that we have on tap today?
Jack Rosen:
Do I not even get a shout-out anymore? I hosted this… [inaudible 00:00:53] of the interview, I hosted this episode.
Stephanie Flynt:
It was Michelle’s turn.
Michelle Bishop:
The level of beef that is brewing between me and our phenomenal producer, Jack Rosen, rose every single month when I do not introduce him. Our producer, Jack Rosen, please take it away, introduce yourself, and maybe tell the people what we’ve got going for the back to school special episode.
Jack Rosen:
Hi, this is producer Jack Rosen. Thank you for that lovely intro, Michelle. Today our main guest is Julie Salih-Worth, she is a teacher with cerebral palsy. And she spoke to us about her experiences navigating the education system, both as someone who is aspiring to become an educator, and what it’s like for her now as a educator with disabilities, and how we could do more to ensure an inclusive environment for both educators and students alike. And Stephanie, do you want to tell the people about our spotlight story today?
Stephanie Flynt:
Yeah, definitely looking forward to the multiple perspectives that are going to be represented throughout this episode. So today for our spotlight story, we are super excited to have Melisa and Allyson Matthews, they are a mother-daughter duo. Melisa has a background as a teacher of the visually impaired, or as some people refer to them as TBIs. And Allyson is her daughter, who also happens to be blind or low vision, and super excited to hear about the way that her mom helps approach age appropriate self-advocacy with Allyson. Allison is… I want to say she’s around 11 or 12, definitely in the preteen years. So again, super excited to hear about that. And let me tell you, I feel like for me, if I had learned age appropriate self-advocacy prior to high school and started learning younger, I feel like it would’ve been of course more ingrained. And while as an adult, it’s something that of course I have begun to learn, the sooner you start to learn, the more comfortable you get, the more confident you get. And so I’m so excited for you guys to hear about that perspective today.
Michelle Bishop:
If I had learned age appropriate anything in high school, the world would certainly be a better place. So I can’t argue that… Why would I say that publicly? That was a bad idea. Oh, I hope my mom [inaudible 00:03:33].
Stephanie Flynt:
Reverse.
Michelle Bishop:
Mom, go back to not listening to the podcast. Okay, so let’s jump right into it this month, and I will be over here drafting the public apology that I’m going to have to issue to Jack because I refuse to ever acknowledge his contributions to this podcast.
Stephanie Flynt:
Can you sing it or write it in a haiku format?
Michelle Bishop:
First of all, don’t threaten me with a good time. If you want a one woman production of a musical of my apology, I’m ready.
Stephanie Flynt:
Let’s do it next episode.
Michelle Bishop:
All right, let’s get into our first guest this month.
Raquel Rosa:
Okay, let’s get into it everyone, today we are joined by Julie Salih-Worth. Julie, thank you for joining us today.
Julie Salih-Worth:
Thank you for having me, I’m glad to be here.
Raquel Rosa:
So getting started, could you share with us a little bit about yourself?
Julie Salih-Worth:
Yes. So my name is Julie Salih-Worth, and I am an elementary and middle school Spanish teacher. I also teach English as a second language to adult learners. If you count all of the years I’ve been an educator, this is probably year 18, but I’ve been teaching for seven in a classroom. And like I said, I work with elementary and middle school students at a Montessori school here in St. Louis, Missouri. I also have cerebral palsy and a visual impairment, and just a fun fact about me, I am a classically trained musician.
Raquel Rosa:
What instrument do you play?
Julie Salih-Worth:
I play piano. I have not played in quite a while, I’m probably a little rusty at this point. But I play piano and I sing.
Raquel Rosa:
Fantastic, thank you so much.
Jack Rosen:
Funny enough, you and I have talked about this before when you joined us a couple years ago for a get out the vote video. But I was wondering for those who haven’t seen it, or don’t remember since 2020 was so long ago, can you talk to us a bit about some of the barriers that you’ve faced as an educator with a disability?
Julie Salih-Worth:
I could talk for a really long time about that. So I knew since I was 15 years old that I wanted to be a Spanish teacher. I absolutely loved my Spanish class in high school, and decided when I got to college that I would study it, and major in it, and eventually ended up with a degree in Spanish. And so the issue was not that I didn’t know what I was doing, or that I wasn’t good at what I wanted to do, the issue, one of many that I had, is that I was told that because I have a physical disability, a noticeable physical disability, that I would not be able to teach. And I attended a traditional four-year university program, where I studied Spanish and education. I successfully completed the program, made it all the way through. And then when I got to student teaching, which is a requirement in the state of Missouri, first of all, I was placed in a school that was incredibly far away from my house. Which is important to the story, because I don’t drive, I can’t drive, it’s not an option for me.
And so transportation right there is already a barrier to me physically being able to get there. But I worked that out, ended up hiring a driver. And then I was essentially told, after having worked in this particular classroom for six to seven weeks, I was told, “If you have your own classroom within a year, I don’t think…” And this came from the teacher who was supervising me, she said, “I don’t think you’ll be able to manage it.” She said, “You have good relationships with students and good rapport with them, and they listen to you, but you have horrible organizational skills. You don’t know how to plan anything, you look exhausted all the time, and I don’t think you’ll be able to do this.” And quite frankly, those were some very, very crushing words. And I later received a phone call that evening stating that the university had decided to remove me from my student teaching placement, and therefore I would not complete my degree as I had originally planned, I would not complete student teaching, at least not at that point in time.
And I was to come to the university the next morning for a meeting to discuss my options. At which point at said meeting they offered me a minor in education, and told me that that was essentially my option unless I wanted to stay at the university for another year and redo the whole thing again. To which I said, “No, thank you, I don’t understand quite what went wrong here. I mean, there are so many reasons why I can’t stay here another year, but I don’t want to, to be quite honest.”
And so after that happened, first of all, I guess I should say, it took me a long time to really unravel that. And it took me a lot of talking myself out of thinking that I was a horrible teacher, and knowing that I was supposed to be an educator, but I didn’t feel like I was. And I felt like that option had basically been ripped away from me. And I eventually did go back to school, and it worked out. But the message that I want people to take away and to understand, is that that took me 10 years. That took me 10 years to be able to say, “I’m going to do this, and I’m going to try again. And that these voices are not going to tell me what I can and can’t do.”
Jack Rosen:
I think that really speaks to one of the big issues here. I mean, we’ll get to some of the issues with the bureaucracy and the IEP process in a moment. But the truth of the matter is also that there are all these barriers to people with disabilities becoming teachers. So we have students who need accommodations, there is that perspective of people with disabilities on the other side of it can be missing, because it is hard for people with disabilities to become educators. So I’m wondering how we could support people who want to be teachers with disabilities, what can we do to make the education system on the teaching side more inclusive?
Julie Salih-Worth:
So if we think about schools of education and education teacher preparation programs, and how can those programs better cater to educators with disabilities? How can schools better cater to educators with disabilities? We need to realize that we are encountering capable, competent people who come from a culture of experience oppression that has a historical background. Most people never learn about the disability rights movement from what I’ve been able to tell. And if we shift our focus from thinking of disability as this medical condition that needs to be fixed, cured, taken away, removed, “Oh, we’ll just remove the barrier and then the person will be able to function just fine.” Yes, that might be true, but we also need to realize that disability is a strong part of a person’s identity that informs who that person is, and it does inform in positive ways. And I would not be the same teacher if I didn’t have a disability, because I have a different perspective.
I don’t have an able-bodied person’s perspective, I can’t. So when my perspective is different, which it is, then the message that I’m able to deliver to my students is also different. It’s equally as valid, it’s one that they need to hear, it’s one that they need to know, and it’s one that needs to be enfolded into the fabric of our educational system. What I’m trying to say is that the voices of folks with disabilities need to be part of the fold of the pedagogy that makes up how we think about education. I’ve always said when I was in school, and I was in school for a long time, I have two degrees, three certificates, and during my 20 something years there I did not have one teacher with a physical visible disability. So we tell educators in their teacher preparation programs that as they’re working with students, and as they’re planning curriculum, and as they’re envisioning their future classrooms, that they need to think about who their students are.
They need to think about students of color, they need to think about students from different socioeconomic backgrounds, they need to think about A, B, and C. And they need to make sure that those students, those voices, those faces, those experiences are represented in their classrooms, in their literature, in their lessons, in their work that they plan, or take home, or what have you. But I said, “I don’t remember anyone thinking that way for me, I was educated by all able-bodied people.” And so I think what needs to happen is we need to reframe how we look at expectations from the educator side, we need to reframe how we look at the expectations for the teacher prep programs, we need to reframe how we look at disability. Is it just a one class and we’re done, or is it something that we’re going to weave into everything that we think about because we need to make sure that that representation is there?
Jack Rosen:
I think that’s a great way to put it, Julie, that it is not enough to just say, “We support students with disabilities, or we support educators with disabilities.” But it needs to be putting in the actual work to do that.
Raquel Rosa:
So Julie, you have a wealth of experience, and I think it is just beyond all of us to relate to the different perspectives and hats you wear, and the history that you have experienced. So I wanted to touch back on something you were discussing earlier, which is the IEP, and I think there’s a lot to unpack with the IEP process. Specifically for this question, I would like to know… A lot of families, parents, legal guardians, they unfortunately come into these IEP meetings unfortunately with an us versus them kind of tone. And it really isn’t supposed to be that way, we really want to make sure that these are student-centered collaborative discussions where the student is at the center of it, and their success is contingent on everybody’s creativity and buy-in. So I was wondering if you could talk to us about how each member of the IEP team can work together to achieve the ultimate mutual goal of academic, social, and all the other attributes of success that a student has in the classroom.
Julie Salih-Worth:
So first of all, I think that communication is key when you’re working on an IEP team, I think that recognizing your role on that team is also super important. And so one of the things that I want to point out is that parents and legal guardians have a huge seat at the table, and so does the student. And so many times I’ve heard people say… Including teachers that I’ve spoken with, they’ll say, “Well, it could be traumatizing to have the student there, because they won’t understand what we’re talking about, they won’t know how to respond. They are too young, blah, blah, blah, blah.” And I’m like, “Okay, so you’re going to have a meeting about someone, you’re going to talk about a 20-page document that has all kinds of things about that person written in it, and they’re not allowed to be in the meeting, is that okay? Would you like it if someone did that to you?”
And so I think that first of all, the student can have a role, even if they’re five years old, they can go to the meeting, they can introduce themselves, they can present something about themselves that they want that team to know. It could be something that they like, a hobby that they have, it can be something that they recognize is difficult for them that they acknowledge they want to work on. And this can be something that the whole team pulls together on and makes sure that that student, however old they are, is at the table for their meeting, even if it’s just for five minutes. Do they have to be there for the nitty-gritty of all the stuff that might go on for two hours? Probably not, but we need to be able to give them the agency to speak up for themselves at a meeting that determines their educational future in large part, that’s all about them.
And time is of the essence for teachers, there’s never enough of it to get the 99.9 million things that need to be done in a day actually done. And I understand that, because I don’t teach one level I teach 14 different classes in first through eighth grade, I get it. And if I’m asked to be on an IEP team, I will be on the IEP team, and I will make sure that that kid gets their accommodations. That means communicating with the special ed teacher, it means asking questions, never think that any question is stupid. We have a tendency… And education schools breed this, we have a tendency to want to be perfect at everything. We think that everything needs to be just so, we think that the lessons need to be just right, the kids need to be engaged 100% of the time. This needs to happen this way, the paper needs to be cut perfectly, yes and no.
If you don’t know something, ask a question. Don’t be afraid to say, “I don’t know how to work with this student, and I need guidance, and I need support, and I have ideas but I need to know if they are feasible.” Don’t be afraid to say you don’t know. I think that if a team of know-it-alls comes together, and everybody comes to the table as an expert, like, “I know this, and you know this, but you don’t know that.” We are all at this table to serve the interest of the child, we are at this table to collaborate.
We are not at this table to get into a battle about services and supports, and ideas about how to make those happen. Because truth be told, the services and supports and all of that, to be quite frank, are going to go away at some point in the child’s life. And the child may not remember that, but what they might remember is the sense that they got when they felt like they were not included in those meetings, or the traumatized feeling that they felt when they realized that this whole meeting was going on about things that they didn’t even know about because they weren’t invited. And so when everyone comes to the table and there’s that us versus them, the first thing we need to do is establish, who are we there for? We’re there for this child.
Raquel Rosa:
So I was hoping to wrap us up, if you could give us one takeaway what students, families, and educators can do to more strongly advocate on a systemic level, what advice do you have?
Julie Salih-Worth:
I think the most important thing that you can do is choose your issue wisely, know that you’re not going to solve the whole thing overnight, because education is a broken system. So choose your issue wisely and determine, who is with you in that thing? Who feels the same way you do? Who can you talk to about this? Who is having the same problem? Who sees it the same way you do? Or who can offer you a perspective that might compliment yours? And talk to people, form a group, get with each other to figure out how to, for lack of better words, solve the system, because you’re not going to do it alone. And to go back to the question about the IEP and the us versus them mentality, we often come to those meetings feeling like we are fighting a battle all by ourselves, and we’re not.
There’s always someone somewhere who probably has the same issue, or feels the same way, and might be afraid to say that. And so this is the piece of advice that I would give. If you can find that person or group of people and get with them, talk to them, get to know them, and strategize around your issue. Learn about it, learn about its history, learn about who did what and how far has it grown, how far has it come from where it is now, and strategize and make a plan for how to solve it. But recognize that you’re not going to do that by yourself, and it might be a really long process, and that we have to do it in collaboration with others. Small victories count, choose your battles wisely. And don’t be afraid to say, “I don’t know, I don’t get it, and this is really frustrating.”
No one is a warrior all by themselves. In the disability community we are taught that you have to pull yourself up by your bootstraps and you have to figure it out, you have to be independent, you have to do it all by yourself. Okay, no, you don’t. I did not get myself to work this morning, I got in a car with someone who drove that car to work. So independence is really an interdependent thing, we all work together whether we’re solving the problem of how to get to work, or whether we’re solving the problem of bias in test scores. And so if you as an individual can figure out what is that one thing in this broken system that you care strongly enough about to fix, get with your people, get with your community and figure out who they are. And then target, who is the person who can help you get what it is that you want to get done? And realize that might take a while. And keep going and say, “Well, that didn’t work, but what else can we do? Well that didn’t work, what else can we do?”
In the same way that when a child doesn’t understand something the first time, if you are a good educator, you don’t just walk away from that child and say, “Well, oh well, you didn’t get it, so therefore I’m done teaching you.” You work with what you have, and sometimes that means that you build a plan to start over, or you build a plan with more people or more resources. But you never, or try to never think that you are in this broken system all by yourself, groping at straws, trying to figure out which way is up. Because I guarantee that there is someone there who knows something that you may not know, who can piece together along with your knowledge the information that’s missing. So always find your people, focus on whatever your goal is, define it, and then figure out who can get you where it is that you want to go on that educational trajectory. Who can get you there? What is it going to take?
Jack Rosen:
I think that’s so true, Julie, that at the end of the day, we need parents, educators, administrators, and of course these students to come together for what’s in the best interest of students with disabilities. Ideally, it shouldn’t be two sides fighting it out, it should be all of them working together towards the ultimate goal of making sure students with disabilities receive the education they are entitled to.
Julie Salih-Worth:
Exactly.
Jack Rosen:
Thank you so much for coming on today, it was great getting to reconnect with you. And I think you shared a great perspective on what it’s like both as someone who’s been a student with a disability, and now someone who’s an educator with a disability and is fighting for their students. So it was great to have you on and thank you so much for joining us.
Julie Salih-Worth:
Thank you again for having me.
Jack Rosen:
All right, so today on the podcast we have on Melisa and Ally Matthews. Ally is a student who has been advocating for herself in the IEP process, and Melisa is her mother. And we’re going to talk to them about self-advocacy and how students can stand up for themselves and get the accommodations they are entitled to. Thank you for joining us today.
Melisa Matthews:
Thank you for having us.
Jack Rosen:
All right, so our first question, Melisa, could you tell us a bit more about you and Ally’s journey, particularly as it pertains to self-advocacy?
Melisa Matthews:
Absolutely. Ally has oculocutaneous albinism, and we have been advocating… Even when she was in early intervention, we did not have a teacher for visually impaired who supported us. And I was constantly asking that question, whether it was the ability, could she physically do that or not do that, or could she see it or not see what they were asking her to do? So even at a very young age, just asking a lot of questions, and even beginning to model some of that for her. So she’s 11 now, and we continue to navigate advocating not just in schools, but outside of school settings.
Raquel Rosa:
Can you tell us a story when you had to advocate for yourself and how you went about doing that?
Allyson Matthews:
Sure. So one of the first times I had to advocate was in preschool when one of the teachers was sharing a book and reading it out loud, and I couldn’t see the pages or the pictures, so I had to ask to move up and see them. And the teacher said yes, so I was able to now see the book, see the words, and see the pictures.
Raquel Rosa:
Thank you so much. So my next question is for the both of you, I was wondering if you could talk to us about what educators can do to be more open and encouraging about self-advocacy from both a parent perspective and a student perspective.
Melisa Matthews:
Yeah, so absolutely. I think as a parent, it’s very important for you to be able to share successes and struggles that your child is having outside of the classroom. And really looking at your child as a whole, being honest at that IEP table. And also as a parent, but also as an educator, trying to really understand the impact of education and access to education, and especially with all the technology being open. And again, what are they doing outside of the classroom? And as educators sitting in the IEP table, really listening to parents and understanding what that child is like outside of the school. Because outside the classroom is a lot of times just as important as inside the classrooms, understanding how they’re accessing their education, or their social life, or curricular activities, as well as just how are they growing and developing as kids? So I would encourage not only parents, but educators all sitting at the IEP table really looking at from the time the child is awake to the time the child goes to sleep, what occurs during the day? And take all of that.
Jack Rosen:
So I’ve been through the IEP process myself when I was a kid, and I know it can be hard to advocate for yourself. Do you have any advice to other kids and students about how to advocate for themselves and the accommodations they need?
Allyson Matthews:
Yeah, I actually do. When you’re talking [inaudible 00:30:36] say what you need to say. Because sometimes you can get super nervous if the teacher is projecting up on a TV screen and you can’t see it, sometimes people can get super nervous when they’re asking. And just the thing is, you have to really come across straight and just say what you mean.
And also having a plan if that teacher or parent says no, because sometimes I ask for things and people say no. So I have to make sure I have a plan for my mom to figure out, or me to figure out. And when this does happen, when a teacher says no, I usually go home and tell my mom, she emails the school, and we get it solved. Or I might just come to the teacher and say, “Hey, I need this and this.” And they might just fix it then and there. And also when you’re talking to a teacher, make sure you get your point across, because sometimes that can be nerve-racking and that happens to me too. But when that does happen, you just have to get your point across, get it fixed, and then you’re good to go.
Jack Rosen:
I think that’s such good advice, never take no for an answer when advocating for your right. Melisa and Ally, thank you so much for coming on today and sharing your perspective. I think it’s really valuable for teachers, students, and parents alike to hear about just how important self-advocacy is. Thank you for joining us today, it was great having you on.
Allyson Matthews:
You’re welcome.
Michelle Bishop:
Well, thank you to all of our guests, and it is September. So Stephanie, I’m guessing you have a themed back to school joke for us.
Stephanie Flynt:
A themed back to school joke for everyone, it’s actually kind of a triple-decker joke.
Michelle Bishop:
Why are all your jokes so long? But go on.
Stephanie Flynt:
Okay, I couldn’t help it for this one. I literally laughed for half an hour because it’s so funny.
Michelle Bishop:
Oh, no, I’m so worried.
Stephanie Flynt:
So what is a cave student’s favorite class?
Michelle Bishop:
A what student?
Stephanie Flynt:
A cave student.
Michelle Bishop:
A cave?
Stephanie Flynt:
A cave.
Jack Rosen:
A cave student?
Stephanie Flynt:
A cave, C-A-V-E, someone who lives in a cave.
Michelle Bishop:
Jack, do you know a lot about cave people?
Jack Rosen:
I haven’t met any.
Michelle Bishop:
I haven’t either, but we can come up with an answer to this. Okay, a cave person’s favorite class?
Jack Rosen:
Michelle, do you want to just explain what happened?
Michelle Bishop:
Nala the service dog jumped on me. I think Nala doesn’t like it when I insult your jokes.
Stephanie Flynt:
Yeah, she doesn’t, she’s very joke protective.
Michelle Bishop:
All right, we don’t have an answer, we got nothing.
Stephanie Flynt:
Gem class, get it?
Michelle Bishop:
Gem, G-E-M?
Stephanie Flynt:
Yeah, G-E-M.
Jack Rosen:
Because they’re in a cave, so maybe there’s gems there.
Michelle Bishop:
So there’s gemstones because they form in rock.
Stephanie Flynt:
Right. Oh, so speaking of which, did y’all know the kids now apparently have walkout songs? Instead of first day of school photos, they now do walkout songs or whatever.
Michelle Bishop:
I respect it.
Stephanie Flynt:
Yeah, so what do you think this cave student’s favorite [inaudible 00:33:45]?
Michelle Bishop:
Oh, no, this is going into another joke.
Stephanie Flynt:
Of course.
Michelle Bishop:
I wasn’t ready for this.
Jack Rosen:
Okay cave student… Wait, I think I got it.
Stephanie Flynt:
Remember the band.
Michelle Bishop:
The Rolling Stones?
Stephanie Flynt:
Yes, [inaudible 00:34:00].
Michelle Bishop:
Oh, I hate it when I know the answer to these. Oh, what’s happening?
Stephanie Flynt:
I think you need to go and watch some Schoolhouse Rock.
Michelle Bishop:
Wow, she’s doing a victory dance y’all.
Stephanie Flynt:
Of course I am.
Michelle Bishop:
As always, you can reach us at podcast@ndrn.org. Jack, how can they follow us on social media?
Jack Rosen:
You can follow us on Twitter, Facebook, and Instagram at NDRN Advocates, we’re also just National Disability Rights Network on LinkedIn. All right, until next time folks.
Stephanie Flynt:
Isn’t it X now?
Jack Rosen:
We’re not doing that. Until next time.
In an episode inspired by the pending SCOTUS case Acheson v Laufer, the gang talk to a wide variety of people about what the case means and the state of traveling for people with disabilities.
On this episode the gang discuss autonomous vehicles as a transportation solution for people with disabilities, including our experiences in a Waymo.
Michelle, Raquel, and Stephanie talk with Mia-Ives Rublee about the ten principals of Disability Justice. Then Stephanie sits down with Maddie Crowley from Disability Rights Florida, for a discussion about what it means to be LGBTQIA+ and a person with a disability.
Michelle, Raquel, and Stephanie talk with Terry Ao Minnis about what Asian American and Pacific Islander Heritage Month means to her and her work at Asian Americans Advancing Justice. Then Mia Ives-Rublee joins us for the spotlight story as she shares her experiences as an Asian American adoptee with a disability.Links:Asian Americans Advancing Justice: advancingjustice-aajc.org.Link to full transcript: https://www.ndrn.org/resource/pandapodmay23/Michelle Bishop:All right, everyone, welcome back to the Panda Pod, and oh my gosh, Stephanie. Stephanie, are you there? Are you there out in the podcastverse right now?
Stephanie Flynt:
I’m here in the podcastverse, yes.
Michelle Bishop:
Yes, because we have major news this episode. I mean…
Stephanie Flynt:
Very major news. Big league news.
Michelle Bishop:
Huge. Huge.
Stephanie Flynt:
Yes.
Michelle Bishop:
We have a third host.
Stephanie Flynt:
Yes! Yes, we do. And it’s because it’s what the people want, okay?
Michelle Bishop:
What the people want.
Stephanie Flynt:
We’ve got to give the people what they want.
Michelle Bishop:
Jack, insert the applause noise right here because everyone is so excited.
Jack Rosen:
Producers note, we do not have that sound effect.
Michelle Bishop:
Everyone say hi to Raquel, our new third host! Woohoo!
Raquel Rosa:
Hi.
Michelle Bishop:
So I am one of your hosts, Michelle Bishop, the Voter Access and Engagement Manager at NDRN, and
Stephanie Flynt:
I’m also one of your hosts, Stephanie Flint, Public Policy Analyst here at NDRN.
Raquel Rosa:
And I am Raquel Rosa, the third wheel, and my mom is also not listening to this podcast. I am with the Rep Payee team, and I am also with the Comms team.
Michelle Bishop:
I am glad you brought this up because I have a crucial update in the saga of my mom not listening to our podcast. So if you guys remember a couple episodes ago, I said I was going to call her out every single episode until she started listening because she had told us years ago that she listens to the podcast, and we have been referring to her as our only listener for frequently, and I found out she’s never listened. So, I mean, Stephanie had a really good point that if I just say on this podcast that she has to start listening or I’ll keep calling her out when she doesn’t listen to it, she’s never going to hear it. But you guys are not going to believe this. Someone else actually does listen to our podcast. Shout out to our good family friend, Andy. Andy, you are the best. And he definitely told my mom she’d better get her act together, and she has officially started listening to our podcast.
Stephanie Flynt:
Yay! Two listeners!
Michelle Bishop:
Two, we have two whole listeners. We have half as many people listening to this show as is required to make it, so we’re on our way.
Stephanie Flynt:
Can we get a third? Can we get a third? Can we get a third person to listen to this?
Michelle Bishop:
Yes. Everybody call your loved ones. We need them.
Stephanie Flynt:
Yes. Yes, and members of Congress. Okay, I’m done.
Michelle Bishop:
So with us, as always, is of course our faithful producer, Jack Rosen. Hi, Jack.
Jack Rosen:
Hey, everyone. And with that, I think we will go into the news. From the Salem Reporter, schools hiring emergency teachers for special education potentially violating federal law. More than 130 emergency licensed teachers are filling in as special education instructors in Oregon this year, short-changing thousands of students and potentially violating a federal law, that law being the Individuals with Disabilities in Education Act or IDEA. Jake Cornett, Executive Director of Disability Rights Oregon said, “High-quality teacher preparation matters for all students, but it’s doubly important for students with disabilities. Teachers who are under prepared are two to three times as likely to leave the classroom. This sort of high teacher turnover among special educators only makes a teacher shortage worse.”
Michelle Bishop:
So I didn’t even know emergency certification of teachers was even a thing. Has anyone heard of this before?
Stephanie Flynt:
Never heard of it. And also too, I’m curious about what criteria they’re even using. Or are they just like, whatever Joe Schmoes come in off the street, are they just saying, “You can be a teacher of…” You know, “You can be an educator of a student with a disability,” or, “You can be educators for students with disabilities in the classroom.” What?
Michelle Bishop:
It’s got… It must be related to… I mean, who knows? It’s got to be related to the teacher shortages caused by COVID, right?
Stephanie Flynt:
Yeah, that’s what I would think. But also too, it’s like Jake said, we need to make sure that these teachers are prepared for their sake, but also, too, the students. That’s really and truly what matters. You know, you see a lot of turnover. It’s already hard enough for our students to get the services that they need. Then you’re going to put a turnover in there of staff that is very likely to happen over the next couple of years, and all of a sudden, so many students are likely going to have to start from square one. And I know that people could also make the argument of, “No, that’s not going to happen,” but considering the current trends, even before the teacher shortage…
Michelle Bishop:
I did take a look at this article. It said that low-income students, students with disabilities, and English language learners were the most likely to have underqualified teachers as well.
Stephanie Flynt:
Not surprised. It’s painful. It’s really sad for our students, and it’s not what they deserve. I mean, free appropriate public education is a thing that all students deserve in these school systems.
Michelle Bishop:
And great quote from Jake Cornett. Keep fighting the good fight, Disability Rights Oregon. We see you. What else do we have in the news, Jack?
Jack Rosen:
From the body, reform of HIV criminalization laws gaining traction in Indiana, but not yet there. From a letter Disability Rights Indiana submitted to the state legislature, “Laws criminalizing people living with HIV without basis in current objective scientific evidence risk violating the Americans with Disabilities Act. Title two of the ADA prohibits discrimination on the basis of disability by state and local governments. Indiana’s HIV criminalization laws based on this outdated science may constitute disability discrimination because the laws expressly treat people living with HIV differently from others engaging in the same behavior.” Under the current law in Indiana, if someone spit on another person, for instance, those charges would be enhanced if the person doing the spitting had HIV. It would be enhanced to a felony charge.
Raquel Rosa:
I didn’t realize we went back to the 80s.
Michelle Bishop:
I never want to go back to the 80s.
Raquel Rosa:
Except for when Michelle and I do our sitcom.
Michelle Bishop:
That’s true.
Stephanie Flynt:
I would so watch that.
Michelle Bishop:
I don’t know if the people know that Raquel and I have an 80s sitcom that we star in in our own minds.
Raquel Rosa:
It’s Michelle and Raquel Take On, and then it’s whatever city we’re visiting.
Michelle Bishop:
And you know what we still wouldn’t have done in the 80s? Discriminated against people with HIV.
Raquel Rosa:
For the people in the back.
Michelle Bishop:
I mean, people who are HIV positive are protected by the Americans with Disabilities Act. It’s probably one of the major triumphs of getting that bill passed, and that was an historic piece of civil rights legislation. So there’s no justification. The science doesn’t support it. Federal law doesn’t support it. There’s no reason to do this.
Raquel Rosa:
Yep. Facts.
Michelle Bishop:
And Jack, do we have anything else in the news? Let’s talk about it.
Jack Rosen:
Yes. From ABC6, “Disability rights groups pushing to support Ohio Voters. Disability Rights Ohio has launched the Plan Your Vote Program in an effort to ensure people with disabilities don’t run into any issues casting their ballot this upcoming election season. The organization is providing some key tips, such as a poll worker can help you cast your ballot, you can take as much time as you need, and if you cannot enter your polling place due to your disability, you can vote curbside.” Though I may say more accurately, “If you can’t enter your polling place due to the fact that it is inaccessible to people with disabilities.”
Michelle Bishop:
Did you put a voting article in here just for me?
Jack Rosen:
It’s quite possible.
Michelle Bishop:
This is why you’re a producer extraordinaire. No, this is actually super important. Planning your vote. I’m so glad this is getting out there. First of all, shout out to Disability Rights Ohio. We love a PNA that gets earned media around their voting work. We’re doing a whole session about that at NDRN’s in-person conference in June, so you might want to check that out. Quick plug, quick plug. Jack, put the link to register in the show notes. Anyway, planning your vote is really, really important and especially for people with disabilities because you think you’re going to vote, you know when election day is coming, and the last thing you want is a surprise on election day when it’s time to get the job done, and things don’t go as planned. So this is something we talk about all the time for voters, and thank you to Disability Rights Ohio for getting the word out, especially in a year like this. It’s a really quiet election year when a lot of voters may not be paying attention, and they need that extra nudge.
So this month is actually Asian American and Pacific Islander Heritage Month, which NDRN is so excited to celebrate with a good friend of ours, Terry Ao Minnis. Terry is the senior director of the Census and Voting programs for Asian Americans Advancing Justice, AAJC. She was part of the litigation team that challenged adding a citizenship question to the 2020 census, co-chairs the Leadership Conference on Civil and Human Rights Census Task Force, and was part of the Department of Commerce’s 2010 Census Advisory Committee, as well as the Census Bureau’s National Advisory Committee on Racial, Ethnic, and Other Populations.
In terms of voting rights, she was a leader in the 2006 reauthorization of the Voting Rights Act. Snaps to that, incredibly important moment in American history. She has been counsel on numerous briefs filed before the Supreme Court on voting rights cases, including Shelby v Holder. No snaps to that, also an incredibly important moment in American history. Minnis was named one of the four living 2020 National Women’s History Alliance honorees, Valiant Women of the Vote. She is one of Now’s 100 Sisters of Suffrage as part of their celebration of the centennial anniversary of the passage of the 19th Amendment. Major snaps to that, incredibly important moment in our history. This is an all-woman hosting team, of course. And she received her Juris Doctorate from American University, Washington College of Law, and her bachelor’s degree in economics at the University of Chicago. Terry, thanks so much for joining us today.
Terry Ao Minnis:
Thank you, Michelle. Glad to be here.
Jack Rosen:
Thanks for joining us, Terry. We’re thrilled to have you on for Asian American and Pacific Islander Heritage Month. Can you get us started by telling us more about the month and what it means to you?
Terry Ao Minnis:
To me, Asian American, Native Hawaiian, and Pacific Islander Heritage Month, it’s a time not only to reflect on, but also to celebrate all that our communities have accomplished, overcome, and continue to battle for with respect to our future. In our month, there really is so much to celebrate, including being the fastest-growing population in the country, a growing representation of Asian Americans in Hollywood, and those in our organization and within the community who are making sure our community is represented in the conversations and fights for civil and human rights.
Of course, there’s still so much work to be done to create a fair and equitable society for all, including taking measures to ensure our community members can feel safe in public spaces, giving our community and ally communities ways to intervene safely when confronted with anti-Asian hate, and from ensuring that all Asian Americans are counted in the census, to fighting for our right to vote and equitable access to the ballot box.
Heritage month is the time to center our community, intentionally reflect, and publicly name how far we’ve come as a community, while acknowledging how much further we need to go. For me, it’s also a chance to be in solidarity with so many amazing advocates, such as yourself, both inside and outside the Asian American community, as we all band together to achieve the promise of equity and diversity in our country.
Michelle Bishop:
So Terry, I got way too excited about all the voting rights stuff in your bio, and there’s a reason for that. Everybody, all of our listeners know that voting is my jam, but also you and I have actually worked together for a long time, and we talk about this issue a lot. I’m wondering if you can talk a little bit about what intersection you see between being a disabled American and being Asian American. What should our listeners who work in the disability community be paying attention to?
Terry Ao Minnis:
Thanks, Michelle. I’d like to start, as you often remind us, people with disabilities come from all communities. The Census Bureau’s, American Community Survey shows that currently at least 8% of the Asian American community are members that have a disability. Often we know that in our work particularly, we can silo the work and the efforts around our advocacy, but the reality is that these are not separate communities, but rather communities that intermingle and share issues, concerns, and needs, and exactly as you said, are where we’ve had opportunities to really collaborate and work together.
So I think one area where there are particular commonalities are for those Asian Americans that are limited English proficient or LEP, right? And that is somebody who is noted as a person who speaks English less than very well. That’s the actual definition for that. And due to the racist immigration laws historically in this country, the Asian American community is highly immigrant. I believe we’re at about over 90% of our community who are either immigrants themselves or children of immigrants. So as a result, we see that Asian Americans speak dozens of languages and dialects, and three out of four Asian Americans in America today speak a language other than English at home.
We also know, thanks to our Census bureau and the work that they do around collecting data, that 45.2% of Asian American citizens of voting age are limited English proficient and experience some difficulty communicating in English. So this is important in this context that we’re talking about because language barriers are a major obstacle for Asian Americans when it comes to voting. Voting is a complex process for even fluent English speakers, so you can imagine for voters for whom English is a second language, that they will face even more confusion when trying to vote and navigate our complex voting system, especially if they immigrated from a country with a different, or in some cases, no democratic process.
So I would say for me that is really an area where we’ve often worked together, and that is dealing with the barriers that our communities face when trying to vote. In addition to the language barriers, or in some ways related to what I was just talking about, Asian Americans have long experienced voting discrimination, and this discrimination is rooted in the false stereotype of Asian Americans as outsiders, aliens, and perpetual foreigners. Based on this perception, we know that Asian Americans were long denied rights held by US citizens, including the ability to vote for most of the country’s existence, including a time period in which the community was the only community expressly prohibited by statute from entering this country. And this is all despite actually having a presence in the United States since the mid-1800s. So we see this discriminatory attitude towards Asian Americans running rampant throughout the political process, whether it’s verbal attacks that we’ve seen lobbied against Asian American candidates or voters, we’ve seen it through political ads that use racially discriminatory imagery or perceptions.
We can imagine that these types of incidents likely have a chilling effect on Asian-Americans willingness and desire to participate in the political process as the constant and consistent message they’re receiving is that they’re somehow un-American and not valued or eligible to vote and don’t belong. I think in our conversations, Michelle, it seems as though oftentimes voters with disabilities also can face that at the polls, much as Asian American voters when they go to vote can sometimes be stopped or questioned suspiciously as to whether or not they have a right to be there, or whether they should be allowed to vote. I think we’ve talked about voter challenges that can occur, whether that is challenges by third parties or challenges by poll workers. And that is something that we have worked together on and produced Know Your Rights Fact sheets about for both of our communities, recognizing that our communities are often the ones that are targeted for suspicion, for questioning whether or not we should actually be allowed to cast a ballot.
So I think for advocates in the disability community what to look for, I think a lot of what we do is work to support one another because often it’s our communities that can be left behind when advances are being sought. And I don’t say that it’s an intentional leaving behind. It’s not as though people within our communities, our allies are targeting. Certainly we know there are others outside of our allies and our communities that are targeting our population. But even within, I’d say that what ends up happening is that it can be a little bit more difficult or a little bit more costly to try to address the needs for our communities, but that doesn’t mean it shouldn’t be done. And what we sometimes come across is the desire to advance a policy, and that desire to get something done sooner rather than later makes it a little bit easier for people to put the harder pieces to the side, and say, “We’ll deal with that later.”
And unfortunately, what happens is that it doesn’t get dealt with later. And what we see is that as policies continue to advance, our communities continue to get left further and further behind. It’s not a stagnant; it’s not a status quo for our communities. If others are being advanced, then by standing still, we are actually falling behind. And that’s something that is just not acceptable.
And so I know that certainly when I am looking at voting policy works, and as I know you often do, we will raise issues for each other if we don’t happen to be in the room, and suggest that the other person’s community be engaged in the discussion because it’s important that when people are working on policy and don’t need to think about those who may have additional needs that must be addressed, that they don’t think about it. So it’s important that we hold them accountable and remind them, “Hey, are you making sure you’re checking in with folks who represent those with limited English proficiency? Are you checking in with people who represent voters with disability?” Right? “Are you making sure that these policies that you are seeking to advance are ones that actually benefit everybody, particularly those that may have the greatest need or have been the ones that have been left behind the most often?”
Raquel Rosa:
Thank you, Terry. I was hoping that you could share with us where our listeners can learn more.
Terry Ao Minnis:
Sure. So I invite people to come visit our website at advancingjustice-aajc.org. From there, you’ll find information about my organization. We are a national nonprofit C3 whose mission is to protect and advance the human and civil rights of Asian Americans and to build a fair and equitable society for all. From that website, you can see the different programmatic areas that we cover. So I cover census and voting, but we also have a tech and telecom team, an anti-Asian hate portfolio, a litigation team. We have a growing community engagement, a field team. We also do work around education, immigration, affirmative action, and so much more. So I definitely invite people to come, and from our website you can connect with our other social media platforms, where we are providing information to interested community members, whether that’s more in the action alert side about how you can get involved, or as I mentioned some know your rights information fact sheets.
One thing that we certainly do on our end, and going back to the previous question, something that people can think about is when we produce community education materials, we make sure to do so in multiple languages when we can. We certainly have a high premium on making sure our materials are translated. For the 2022 election, we translated our materials into 13 non-English languages, and we make sure to provide that. Additionally, I will say, and I’m not saying that we can’t do a better job, and we’ll strive to continue to do that, is when we are looking at our materials, we also try to make sure that they are accessible for readers with disabilities. So Michelle has had the joy of me sending things to ask whether or not we are hitting the mark, and it’s something that definitely I know that we can do a better job, and we will certainly continue to work to make sure that what we’re doing is accessible to all the different members in our community.
Raquel Rosa:
Thank you so much, Terry, for joining us and for expanding our knowledge and insight of comrades in the field, people with whom we should be standing alongside. Your time and efforts are very much appreciated, and I just want to thank you on behalf of our podcast and DRN and the PNA network. Thank you so much.
Terry Ao Minnis:
Thank you for having me.
Jack Rosen:
Thank you so much, Terry. And now for our spotlight story with Mia Ives-Rublee about her experiences as an Asian American woman with a disability.
Mia Ives-Rublee:
Yeah, hey, my name is Mia Ives-Rublee. I am a Korean American adoptee who also has a disability, and I had an interesting experience growing up because I was an adoptee, so my experience as a Korean disabled woman is a bit different from the typical experience because my parents were white. And so I didn’t really have a really good sense of what it meant to be an Asian American growing up. My parents, I don’t think they were exactly prepared to raise a daughter who was a different race of them. They don’t give parents a handbook anyway, but they definitely don’t give adoptive parents a handbook on how to deal with the structures outside of the family that a child will face while growing up and becoming an adult.
So my parents, they tried their best. They sent me to Korean school, and I actually left because I got bullied because I didn’t speak Korean. And we went to a couple of cultural festivals and some theater shows, but I didn’t really have a good understanding of what it meant to be Asian American as a child. What I did understand quite fluently was what it meant to have a disability. It always felt like my disability came first in terms of my identity growing up. My parents were rabid activists and advocates for me. They made sure that the school took my rights into account. There were many days that my parents would storm into the school and argue with the principal, or argue with the teacher, or even argue with the county to ensure that I got access to things like accessible school buses, the ability to take certain classes, et cetera. And so for me, again, disability was sort of on the forefront of my mind growing up in terms of identity.
And then I went to… And there weren’t that many Asian Americans in my school. There was one Korean girl that I remember meeting in high school, and then there were some South Asians as well that I went to school with. But in terms of folks I had a lot of interactions with, I just didn’t have a lot to go off of. And so it wasn’t until I hit college that I decided to take it upon myself to actually do some sort of digging and reconnecting with that part of myself. And I think that sort of got kicked off by a friend of mine who I did acting with, and she was talking about some of the stereotypes that Asian Americans faced, and I was like, “Oh, wait. These are the things that I’m facing. These are the things that I experienced growing up as a child.”
I remember people making fun of my eyes. I remember them making fun of my hair, and getting told that I spoke English well, et cetera, and people talking to me about karate, and martial arts, and stuff like that. I remember that, but I just didn’t have the words to talk about my discomfort in it because I knew that people were stereotyping me, but I didn’t understand why. And it wasn’t until I met this friend in college who was talking about her experiences that I was like, “Oh, so this is what it means to be an Asian in America,” and that experience of reconnecting with her and with others was huge for me because, again, I just didn’t have that at growing up. And I continued to sort of do some background research and reconnect with folks in the Asian American community.
It had to be very intentional on my part to try and make sure that I did get connected, and I just can’t thank my friends enough for taking me under their wing, and teaching me everything, and really including me in a lot of the events and activities that they like to do, including celebrating Lunar New Years and doing all of these other fun events with AAPI organizations.
And then I actually got the awesome opportunity to do some campaign work in North Carolina, doing outreach to Asian American and Pacific Islander communities. And it gave me a chance to just sit in communities, communities that I sort of lived near, but never got to really interact with as a child. I got to go and interview them and talk to them about their experiences and the concerns that they had, et cetera. And it was just an awesome experience to get to do that in my home state. And then I got to go down to Georgia and do that again. And it’s just such a unique opportunity to sort of reconnect with things, and to better understand folks who look like you, and who have similar experiences to you. And so all of that was an amazing experience.
And then I got the opportunity to join the Presidential Advisory Commission on Asian American, Native Hawaiian and Pacific Islanders and have gotten to hear even more about different experiences across the AANHPI community is such a broad community. Over 60 to 80 different ethnicities and cultures go within that title of Asian American, and so it’s been an amazing journey. I wish it hadn’t been so hard to get reconnected and figure out who I was. And lately I’ve been able to talk about what it means to be an Asian American with a disability, and I think that puts another sort of color or another tint to the lens that I work with in terms of being able to talk about the stigma of disability in Asian American communities, and talking about how we address it to ensure that kids like me get to grow up feeling empowered, and feeling like they have people that they can look up to as they’re growing up.
Michelle Bishop:
Mia, as we take this month to reflect on the disability community and the Asian American community and where it is that we meet, it’s so powerful to just hear you talk about the importance of community and finding community in your life, so just thank you so much for sharing your story with us.
Mia Ives-Rublee:
Yeah, I’m so glad to have been able to share my story.
Raquel Rosa:
We want to thank our speakers today for being real with us and reminding us about the diversity of the disability experience.
Michelle Bishop:
Yes, absolutely. First of all, for the realness, because if anybody keeps it real, it’s definitely Terry and Mia, but also just that reminder that the disability community is so big and so diverse, and we are not all one color, we are not all one religion, we are not all one gender identity or sexual orientation. We don’t even all have the same disability. It’s such a large community, and there’s so much intersection between all of those identities that really create the disability experience.
Raquel Rosa:
And as we fade from our real talk, we’re going to fade into some joke talk. Stephanie, it’s all you.
Stephanie Flynt:
Oh, my gosh. Can we start calling it Joke Talk? Jack, I’m going to record a jingle, and I’ll send it to you for next month.
Michelle Bishop:
Please don’t do that.
Jack Rosen:
You have been promising me jingles for months.
Stephanie Flynt:
Well, okay. I need to do that.
Michelle Bishop:
Speaking of realness.
Stephanie Flynt:
That’s fair. [inaudible 00:32:13].
Jack Rosen:
I want the jingles!
Stephanie Flynt:
I know, I know. I deserve the shit, but okay, we need to figure out… We’ll do this offline, but we’ll figure out the list of jingles that you want, so that I can send you a comprehensive album.
Michelle Bishop:
Realness. Jack just totally called Stephanie out, first of all, for promising all these jingles. That was amazing. Also, I’m pretty sure I Want The Jingles is now the name of this episode.
Stephanie Flynt:
Yes.
Okay, I’m done.
Okay, so I actually have an announcement rather than a joke this time.
Michelle Bishop:
Plot twist.
Stephanie Flynt:
Yes, yes. So for those of you who don’t know, I have a guide dog, and her name is Nala. And Nala is a Labrador golden retriever mix, and she loves Michelle, and she loves Raquel and yes.
Michelle Bishop:
Me and Nala, we are besties. Besties for life, me and Nala. Yes.
Jack Rosen:
Does Nala not like me?
Stephanie Flynt:
No, Nala loves you too! But I always… Michelle and Raquel rhyme. She also loves producer Jack, always wants belly rubs whenever he comes by, and literally will wag her tail if he comes by and doesn’t stop by. She’s like, “Hello?”
Michelle Bishop:
Good save, Stephanie. Good save. Good save.
Stephanie Flynt:
No, no, no. It’s the truth. But anyway, so when we’re not at the office, Nala gets really lonely, and so I’ve decided that I’m going to get Nala a pet, and I’m going to get her a pet frog. You want to know why?
Michelle Bishop:
I’m so scared of where this is going, but yes.
Stephanie Flynt:
Because… Okay. Well, the frog is very likely… Studies show that the frog is very likely to find my jokes ribbeting.
Michelle Bishop:
That was…
Jack Rosen:
Oh, my God.
Michelle Bishop:
So much lead up for that joke.
Stephanie Flynt:
Jack, [inaudible 00:33:53]. (Laughs) I’ve been practicing that one for a week. Okay.
Michelle Bishop:
This whole episode broke my brain.
Stephanie Flynt:
Okay, I just made Michelle laugh. She is smiling, guys.
Michelle Bishop:
Oh, that’s so bad. All right, well now that is out of the way, we also want to take a moment to, of course, plug NDRN’s annual in-person conference that is coming up next month. The first week of June, we are going to be in lovely Phoenix, Arizona, and we will make sure that the link to check that out and get more details is in the show notes. All of us will be there, and you know you totally want to meet us in person.
Stephanie Flynt:
Yes. I was just going to give a plug for the public policy session because all the cool kids are going to be there, so don’t forget to sign up for that. Okay, thanks. Bye.
Jack Rosen:
All right. And you can follow us on LinkedIn, Facebook, Instagram, and Twitter. We lost the blue check, but we are still there. You can also…
Michelle Bishop:
I promise it’s still really us, even without the blue check. It’s still us.
Jack Rosen:
And you can visit our website, www.ndrn.org to keep up with all the great things we’re doing. See you next time, folks.
Michelle, Raquel, Stephanie, and Jack speak with people who knew Judy Heumann about her love of life, her sense of humor, and what it was like when you disagreed with the mother of the disability rights movement. Guests in order of appearance: David Hutt, Diego Mariscal, Kelila Weiner and Kylie Miller, and Maria Town.
Listen to Judy’s podcast The Heumann Perspective: https://judithheumann.com/heumann-perspective/
Stream Crip Camp: https://www.netflix.com/title/81001496
Read more reflections of the people Judy influenced: https://19thnews.org/2023/03/remembering-judy-heumann-disability-rights-policy-movement/
View full transcript of this episode on: https://www.ndrn.org/resource/panda-pod-tribute-to-judy-heumann/
Stephanie Flynt:
Hi folks, and welcome back to another edition of the PandA Pod. Now, this episode is going to be a little bit different this month. So for this episode, we are going to be paying tribute to Judy Heumann, or to who most of us know her as the Mother of the Disability Rights Movement. I’m super excited about today’s episode because you guys are going to get to hear from a variety of people who worked closely with Judy in various points, people who were very close with Judy, and people who were able to work with her in multiple capacities. So you’ll be hearing from David Hutt, our legal director here at NDRN, Diego Mariscal, CEO of 2Gether-International. Next we have Kelila Weiner, Judy’s personal executive assistant, and Kylie Miller, Judy’s digital content creator for the Human Perspective, among other digital content. And last but not least, Maria Town, the CEO of the American Association of People with Disabilities. So without further ado, let’s not waste any more time. Let’s get right into these stories and interviews.
Michelle Bishop:
David, can you talk a little bit about what it was like to work with Judy?
David Hutt:
So after I left New York and came to Washington to work with NDRN, which would’ve been in about 2006, 2007, I started working with Judy who was, at the time, getting very involved in the Convention on the Rights of Persons with Disabilities. So at the time, the United States had said, “We’re really not going to have anything to do with this international treaty on disability rights.” And Judy was very active at the time to try to get both the United States to first sign the treaty, and then eventually for the Senate to ratify the treaty. And she had this both toughness and incredible warmth that she could combine. So the advocate I saw many times when she was working to organize the disability community, when she was making a point to whether it’s a government official or to a member of Congress, so she was definitely tough and had her points well out, but she also had this warmth, and it wasn’t combative in the fact that she was, “I’m right, you’re wrong.” It was a way that she persuaded people that she was right that was so effective.
And it was very rare that I was not in a meeting with Judy that she wasn’t trying to make some sort of connection with somebody. So she would hear a person with a disability having this idea, and she would try to connect them with someone else within the disability community. Or to the level of if she heard of someone who was having a difficulty, she would often call me up or some other folks at NDRN to say, “Hey, can you help me connect this person with the P&A in this state because they’re having an issue.” This happened a couple of occasions. Often it would happen with someone who maybe, when she was working on international issues, wanted to help that person get into the US or they were in the US and they were looking for services, and she would look to see if the P&A can help them. The more I worked with her, the more I realized just how she can make that one-on-one connection with people.
I used to joke in the first couple years that I worked with her just how intimidated I was, I was nervous and tongue-tied talking to her because of her great work and her great history, but then as time go on, she actually became a colleague and a friend, the more we worked together.
Stephanie Flynt:
I will say this, David, it is very hard for me to picture you being intimidated, so that is still something that I’m having trouble picturing. But all that to say, a lot of people have been sharing a lot of different stories about Judy and her character, and I know that you’ve been talking about a lot of the work that you were able to do with Judy. Do you have any favorite story moments? We all know how spunky she was, or at least those who knew her knew how spunky she was. And I mean, it only took you about five minutes to realize that she was very no nonsense, but like you were saying earlier, also had this way of talking to people that would make her listen rather than be condescending or what have you. But do you have any particular stories that really stand out to you about working with Judy?
David Hutt:
Yeah, Stephanie. So a couple of stories. So one, after I’d worked with her for a couple of years on various international issues and the disability rights treaty, we were in a meeting, I don’t know, maybe this is about five, six years ago, maybe a little longer than that, and I had some difficulties going with various things, and I had grown a beard and I was upset with a few things, and I was either going to reach out to her or she reached out to me, I can’t remember, but she looked at me and in such a nice way, she says, “You don’t look good.” And I don’t know if it was the beard she didn’t like, or if it was I looked drawn and tired, which is probably the case. And she said, “Hey, why don’t we get together? Let’s come over to talk.” And I was like, “Oh my God, Judy’s going to have me over to her apartment.” And she invited me over and we sat down and talked about some issues that I was having and some ideas she had.
Given Judy, she put me in contact with a couple of people and later that day emailed me and said, “Oh, you should talk to this person, or that person,” quickly followed up. Then I went over there a few other times, we had some mutual friends, we went out to dinner or to lunch with a few times. So it was just that ability to really help somebody. And I remember at the memorial service, a lot of people were laughing at the stories about how she always had her phone with her, and she was always saying, “Oh, I got to take this,” or, “I’ll be right back.” And every time I was with Judy, whether it was personally or through a more professional reason, she was always that way, “Oh, wait a minute, I got to take this. I’ll be right back,” or, “Let me just text this person.” So that’s one of my, I think, as a friend of hers, one of my favorite stories, is just that empathy to reach out and notice that I was struggling with a few things.
Raquel Rosa:
Diego, thank you so much for joining us today. If you could start by sharing with us how you first met Judy, we’d love to hear that.
Diego Mariscal:
Yeah, of course. Thank you for having me. I feel like it’s such an honor to get to talk to Judy at length. Like you said, we did have a very special and unique relationship. So Judy and I met about eight years ago, so I feel like it’s not that long ago, at the UN Conference of States Parties in New York. I knew who she was, and so when I saw her, I remember getting her card and immediately having to go to the bathroom to calm myself because I was so excited that I got to meet Judy Heumann. And from there, we’ve developed this very unique friendship, and I don’t know if you want me to go into the specifics of how that developed, but we ended up, for the past eight years, really quickly, we would talk almost every day. She was my emergency contact. I mean, really it was she was like my second mom. And so it was such a privilege and a blessing to be able to have that relationship develop so quickly and organically.
Raquel Rosa:
Thank you so much. So obviously you had this strong personal connection. I was hoping you could share with us a little bit about what she was like as a person.
Diego Mariscal:
So I can get a little bit into how we developed that relationship, and that I think would yield some light into how she was as a person. So we met and she was working at the State Department at the time, extremely busy, but she immediately said, “Yeah, let’s of course get together and talk about what you’re working on.” And being the extreme extrovert she was and how busy she was, it took a couple of months to schedule the call. But once we got on the call, she was interested in what we were doing. But the thing that really hooked her was when I told her that I’m originally from Mexico because her husband is from Mexico. And so when I told her that, she was like, “Oh my God, here, take down my cellphone and we have to get together for dinner.” And so I did.
And again, it was one of those moments where I couldn’t believe what was happening. And a few weeks later, I texted her about getting together and we went out for ice cream. And so I share this story to show that Judy was so much about getting to know people for who they really were, even though she was really a celebrity and often called the Mother of the Disability Rights Movement, she was so simple and humble. And even the last text I have from her, I had gone on a trip to Cuba and her last text to me was, “I’m in the hospital, Jorge is also in the hospital. How was Cuba?” So if that doesn’t tell you how much she cared about other people beyond herself, I mean, it was an incredible, incredible person that keeps inspiring me every day.
Raquel Rosa:
I’m sure you had some fun and lighthearted moments together. Do you have any specific memories that you would like to share?
Diego Mariscal:
One of the last, in fact, I think the last in-person meetings that we had was at her house singing karaoke. We were singing Abba songs. And there’s a video of me singing with her karaoke, and that was the day before I went to Cuba.
Raquel Rosa:
Could you tell us what song you were singing together? I just want everybody to know.
Diego Mariscal:
Yeah, yeah. We were singing, I will definitely share with you, we were singing The Winner Takes It All, which seems quite fitting for the situation that we’re all in right now.
Raquel Rosa:
So ladies, I was hoping you can tell us a little bit more about what Judy was like as a person. Kelila, let’s start with you.
Kelila Weiner:
I knew Judy in the last part of her life, quite literally. And my impression of her was that she had her way of doing things and her way of being all figured out. And one thing that became abundantly clear and was very clear in life, and just became even more clear through the process of grieving her with her community, is that she was very familiar and she asked lots of people lots of questions right away, and maintained that getting to know people and connecting with them was one of her favorite ways to find joy in life.
So I think that’s a really big part of who Judy was and what she was like. And I also think that something that shone through a lot was how eager she was to work. I started this by saying that I knew her in her last part of life, but that doesn’t mean that she had or had any interest in slowing down at all, which was very admirable. And of course created lots and lots of work for Kylie and I, so we were never bored. That was one thing that I really admired about her. And one thing that came through pretty clearly was her affinity for her work and for working in general.
Raquel Rosa:
Amen to that. Kylie, can you tell us about how Judy was as a person?
Kylie Miller:
Yeah, I echo everything Kelila said. Something I keep saying to people is Judy was not interested in knowing people on a surface level, she was only capable of wanting to know really everything about someone if she could. At the top of every business call, she wanted to go around and not only know everybody’s name, but know where they’re from and if they had kids. And she would do this on business calls, she would do it at the grocery store. Really, she just had this intrinsic desire to know people well. And I think that’s why so many people feel so close to her in her passing, even people who haven’t met her. And I guess otherwise, personally, I think Judy really loved joy and joyous things. She loved theater, she loved music playing, and these are things that I think because of the intensity of her work sometimes aren’t talked about enough, just how much she loved color. She was so joyous about the Mexican culture of her husband, Jorge, and she really was just a vibrant person all around.
Raquel Rosa:
So as you’re telling us what Judy was like as a person and what your experiences were like with her.
Kelila Weiner:
Something that was funny to me was when Judy would choose to have a celebratory drink, it was pretty far between, but one moment that sticks out to me is another one of our trips where Kylie and I got to accompany her to New York. She received an honorary doctorate and also was their commencement speaker. And afterwards, in the hotel bar, she was like, “I am ordering a White Russian.” And we were like, “Okay. Odd choice, but absolutely.” And then she drank the whole thing. She was like, “That was great, and I’m glad I did it.”
Kylie Miller:
Yeah. Yeah, that’s a good one. Another that comes to mind is I went to a show with Judy called Hi, Are You Single? It’s a play by Ryan Haddad, and he’s a disabled actor, playwright, all things theater. And we went to go see the show at the Wooly Mammoth. And afterwards, it had been set up for Ryan and Judy to meet, they had a lot of mutual friends, and he was thrilled, he personally invited her to come. And we met, and he said that the whole show, he was watching Judy, because it’s a kind of monologue show, it’s a one-person show, so there’s a lot of audience interaction. And he said he was watching her and he could not get a read on her take on the show. He’s like, “Oh my God, she hates it, she hates it, she hates it.” He thought that the whole time. And the show’s really raunchy, it’s about his experience as a disabled gay man and trying to find people to go on dates with and stuff.
And he was like, “I know it’s not some people’s comedy, it might not have been your thing.” And she’s like, “Look, I’m no prude. I loved it, it was great.” So it was just a funny story. And I think I even echoed that. I’m like, “Yeah, no, Judy’s 75, but she’s not a prude. She’s not afraid of this type of thing.” And I thought that was a really funny interaction between the two of them.
Jack Rosen:
Thank you for joining us today, Maria. Can you tell us what Judy was like as a person?
Maria Town:
Judy was an incredible friend and connector. She was really good at maintaining relationships, but she was, if I can say this, even better at connecting people to one another. And if she knew that you were interested in voting, she would say, “Oh, well, have you talked with anybody at REV UP?” And she might connect you to AAPD’s REV UP team. Or if she knew you were autistic, she might just connect you with other autistic advocates. So things like that. She asked a lot of questions, and those questions could sometimes be very direct and straightforward. And for people who were unaccustomed to that, it could be a little off-putting. But for Judy, asking the tough questions was actually one of her primary ways of expressing interest and care, and engaging in things that she thought were important. Judy really believed in the, or I should say she insisted upon leadership by disabled people. She was always one of the first people to say, “Who’s at the table? Are they disabled? We need disabled people to be there.”
And I think Judy also really believed in the power of cross-disability organizing. And that was something that she really started with Disabled in Action and with other groups, I think I’m going to get the acronym wrong, but the Coalition of Disabled Citizens, and then the work that she did with the 504 protests, and [inaudible 00:16:58] and beyond. And it’s one of the things that I think she really contributed a lot to the AAPD board in was her perspective on why cross-disability organizing was important, how it was vital that we, as a community, really understood one another’s experiences and worked to support each other. Judy was an extrovert, she loved the phone, she loved to get together over dinner, and she also worked incredibly hard. I can’t tell you how often we would work together at 10 o’clock, 11 o’clock, 12 o’clock at night on key issues. And she and I worked together in a few different ways.
When she was at the Department of State, I was at the Department of Labor, but because of her work at the Department of Education, we did work together sometimes on issues facing young people with disabilities as they transitioned from school to work. We worked together on something called the Marrakesh Treaty, which affects Braille documents that are transported across international borders. And then as we became friends, we work together on different presidential campaigns and then on all kinds of issues, when I came to AAPD and she began to build her media empire. And I think for people who want to learn more about what Judy was like as a person, they should watch her podcasts, which is available on a variety of platforms. And you can see the way that she engages with people, the questions that she asks. She was an incredible, incredible person.
Jack Rosen:
And finally, I was wondering if you had any positive or lighthearted stories about Judy you’d like to share?
Maria Town:
I do. One of my favorite Judy’s stories, so I have been married now for a little over a year, and my wife’s name is Cheryl, and Judy really loved Cheryl. And when I got engaged, we were really excited, but not everyone in our family was as excited as we were. And prior to getting engaged, a few months before getting engaged, Judy called me and said, “Are you engaged?” And it was so funny because when she called me, only a few days before, I’d actually decided to propose to my wife. And so it was this strange question and I was like, “Judy, no, I’m not engaged. Who have you been talking to? Why are you asking me this?” And she said, “I don’t know, I just felt like you should be engaged.” And so I told her that when I got engaged, I would call her. And she wouldn’t find out from somebody else, she wouldn’t find out on social media. When I got engaged, I would be the one to tell her, I would call her.
So fast-forward in February when I actually did propose to Cheryl, I called Judy and when she answered, I said, “Judy, you know how I said I would call you when I was engaged?” “Come on, [inaudible 00:19:58] show me the ring, tell me everything.” She was just so excited. And I really cherished that because it was just excitement that we really needed at that time, and she was so loving.
Jack Rosen:
Wow. She sounded like such an incredible person, I wish I had the chance to know her. Thank you, Maria. Anything else before we close out?
Maria Town:
So one of the things about Judy is that she pushed people and in a lot of different ways. And she, for example, was always pushing me to be bolder in my advocacy and to really claim my own power. And I wasn’t necessarily, again, ready for all of this at the time, but she still did it. And on a funnier, lighter note, Judy and I attended the wedding of another disability advocate, Ari Ne’eman. And Aria’s Jewish, and Judy asked me to do the hora with her. Now, I have cerebral palsy, my balance is terrible, doing the hora is something that will result in disaster, and potentially bodily harm to me and others. And I was like, “Judy, I don’t know about this. I don’t think it’s a good idea.” And she was like, “Come on, just dance. You can hold onto the back of my chair.” And so that’s what we did, and I walked away unscathed, and grateful to have done the hora with Judy Heumann.
Jack Rosen:
It was so incredible to see all the lives that Judy touched, and it seemed there really was a running theme that she took a real interest in so many of the people she met and was dedicated to leaving the disability rights movement in a better place.
Stephanie Flynt:
Oh my goodness, you’re telling me. Yeah, definitely, you can just tell from all of the stories that have been told today that she served as a friend and a mentor and a colleague. And she wasn’t afraid to tell you how it was and she never seemed to met a stranger. She wanted to help every single one of us in this community become better advocates in whatever way she possibly could. And that is so evident in the stories told today. And yeah, I think we can see why she is considered the Mother of the Disability Rights Movement, she more than earned that title.
Jack Rosen:
100%. And if you want to learn more about Judy’s legacy, there’s a couple of articles we’ll link to in the show notes. Also, you can check out Crip Camp on Netflix of course.
Stephanie Flynt:
Yes, 10/10 recommend, watch it.
Jack Rosen:
Thank you for joining us on today’s episode of the PandA Pod. As always, you can follow us on social media, @NDRNadvocates on Instagram, Twitter, and Facebook. You can also follow us on LinkedIn at the National Disability Rights Network. And finally, you can join us in Phoenix, Arizona, June 5th through the 8th for the 2023 National Disability Rights In-Person Conference. We’ll have a wide variety of sessions, ranging from legal issues to public policy. You can even join me for The A to Zs of Content Creation. You can find more information about the annual conference at our website, www.ndrn.org.
Stephanie Flynt:
Oh, and BTWs, all the cool kids are going to be at the public policy session. So yeah, go ahead and sign up now. Until next time, everybody.
Jack Rosen:
See you.
Raquel Rosa joins us on this one, as we sit down with some of our friends from the Arc of Massachusetts to talk about Operation House Call. Maura Sullivan and Jonathan Gardner explain how the program teaches medical and nursing students about treating patients with I/DD with respect and sensitivity to improve outcomes for all involved. Then med student and future pediatrician Naaz Daneshvar talks about getting her university to adopt Operation House Call as part of their curriculum.
Learn more about Operation House Call at https://www.operationhousecall.com
Full transcript of this month’s episode available at https://www.ndrn.org/resource/panda-pod-is-there-a-doctor-in-the-pod
Transcript:
Intro Music Plays
Michelle Bishop:
Hi everyone, and welcome to another edition of the Panda Pod, your favorite disability rights podcast. I am Michelle Bishop, NDRM’s Voter Access and Engagement Manager, and one third of your incredible hosting team.
Stephanie Flynt:
I’m Stephanie Flint, one of NDRN’s Public Policy Analysts.
Michelle Bishop:
And we have another special guest host this month, Raquel Rosa. Shout yourself out to our listeners.
Raquel Rosa:
Hi everyone, this is Raquel. I am also at NDRN. I am part of the Rep Payee team, and I am solely transitioning over to the External Relations team. Thanks for having me.
Michelle Bishop:
Thanks, Raquel. We’re so excited for you to join. Before we get started with the business of this episode, I have some important business to conduct. I have to make good on a promise I made someone. This is our March 2023 episode, and officially the first episode of me calling out my mom every single episode until she starts listening to our podcast. I think y’all have heard me say before that my mom is our only listener, and I just recently found out despite the fact that I set up a podcast app on her phone, she is not listening to us. So mom, this is your official call-out. You better get in touch with me ASAP or I’m calling you out again next month.
Stephanie Flynt:
Okay, so if she doesn’t listen to the podcast, she’s not going to hear you. You might want to text her.
Michelle Bishop:
I’m going to keep saying it until the word gets back to her. The four of you are just going to have to listen to this every month until the podcast inevitably crashes and burns.
Stephanie Flynt:
You heard it here first. Y’all figure out a way to contact Michelle’s mom so that we don’t have to listen to this PSA every month.
Michelle Bishop:
If you’re stuck with Stephanie’s jokes every month, then I can do this, all right?
Stephanie Flynt:
Fine.
Michelle Bishop:
Sorry. Sorry. Okay, Jack Rose and our trustee Producer, who we forget to introduce every single episode, please take it away. Tell us what’s in the news these days.
Jack Rosen:
From Youth Today, a state is being sued for warehousing children with disabilities in foster care. Late last year, Disability Rights North Carolina and the North Carolina chapter of the NAACP filed a class action suit against North Carolina Department of Health and Human Services Secretary Kody Kinsley, seeking to end discrimination regarding children with disabilities who were placed in foster care as wards of the state, and who are then unnecessarily segregated from their home communities.
As a result, these children are often isolated and heavily restrictive, and politically inappropriate institutional placements called “psychiatric residential treatment facilities.” Through their attorneys, the North Carolina lawsuit alleges the children who stand as named plaintiffs, using pseudonyms of course, are receiving heavy cocktails of mind-altering, psychotropic medications while at these facilities.
Stephanie Flynt:
I feel like I only have one word, and it’s a question, and that is, why? I know that the foster care system is a broken system, but this is just heartbreaking. I’m honestly at a loss for words.
Raquel Rosa:
I was just going to say, this is so gut-wrenching, the trauma upon trauma that these young people are faced with. There is a general perception I think that the child welfare system is benevolent and that these young people are in good hands. Unfortunately, that is incredibly the furthest thing from the truth. A lot of these young people are also receiving Social Security benefits, and those benefits are unfortunately not always used in their best interest, and they’re not always being conserved for when they transition into independent adult life. It’s bad every way you slice it.
Michelle Bishop:
Yeah, I’m not sure what else to say about this one. It’s truly terrifying, but it makes me thankful for organizations like the PNAs in our network that are doing incredible work to try to stop things like this from happening to people with disabilities. So, shout out to all of you who are out there protecting people with disabilities every day. I appreciate you so much.
What else do we have in the news, Jack?
Jack Rosen:
From the State Journal in West Virginia, home care services shortages and issues placed West Virginians at risk. Advocates for the elderly and people with disabilities in West Virginia are calling for more investment and oversight in home care as workforce shortages and other issues within the industry bring consequences ranging from mere inconvenience to unnecessary institutionalization, and even death. These services can help individuals live independently in their own homes, be involved in their communities, and avoid institutionalization in psychiatric facilities or nursing homes. They also provide a cost savings.
It costs about $250-$300 per day to keep an individual in their home, compared to about $900 a day for that individual to live in an institution. Susan Given, the Executive Director of Disability Rights West Virginia, had this to say, “We’re trying to get people to understand that this is serious. People think this doesn’t affect them, but their parents may be one day away from having a stroke or heart attack that would be debilitating, or a car accident with a child. It’s just something that everyone should be concerned about because you never know when you’re going to be in that situation. No one is insulated from something like this happening to them or a family member.”
Michelle Bishop:
Disability Rights of West Virginia, first of all, are fearless, so shout out to them for the advocacy they’re doing here. Do we know y’all, and I’m kind of looking at you Raquel because I feel like you would know about things like this, is this a COVID-related thing? Are there worker shortages in this industry following the pandemic?
Raquel Rosa:
Well first, I also want to piggyback on the big shout-out to Disability Rights West Virginia because they are phenomenal. I am just so pleased with them being so bold in pushing for people to be at home, and thrive in their own personal space. Yeah, so to answer your question, Michelle, this has been a pre-existing issue. COVID has made it worse. When it comes to direct supports, and by the way everyone, I spent the first decade plus of my career providing direct supports so it’s something very near and dear to me, there’s more than one issue.
One of them is that it’s not a well-valued career. People unfortunately associate this work with intimate care that is just not considered appealing. It’s not paid well. People are not trained well. Oftentimes, service providers do not offer any kind of professional development or incentives to grow. For some of the people, myself included, who moved beyond that, it’s really up to us to make those steps into another direction, to deepen our advocacy, to deepen our expertise. Otherwise, it’s just unfortunately a cycle of not great recruitment strategies, no good retention strategies, and unfortunately just the de-valuing of people with disabilities.
COVID has obviously made it worse, and part of it is people’s fear of just being in spaces with people who are that much more vulnerable to COVID. Some people are saying, “Hey look, this has made me reassess what’s important to me, and I want to do something more.” People are taking the proverbial bull by the horns and getting that education on their own. They are attempting other career moves that can help people. I think it’s a really big issue. I think we need to get a lot of policy makers on board with enhancing budgets, and really trying to incentivize this workforce because everybody deserves the right to be at home, live at home, thrive at home, and to also go to the policymaking angel.
Having a cost benefit analysis is just chef’s kiss because people ultimately want to see how is this beneficial when it comes to dollars and cents. When you’re talking about at $700 difference between at home support and institutional support, it’s astounding. So not only is the quality of life for someone that much better when they’re at home, the cost benefit is undeniable. So yeah, I think it’s a really big issue for us to tackle, and it’s something near to me. I am happy to be part of the charge.
Michelle Bishop:
Well y’all see why we had Raquel on today.
Stephanie Flynt:
Beats me.
Raquel Rosa:
I hear you snapping those fingers.
Stephanie Flynt:
Yes.
Michelle Bishop:
Jack, any other news stories for us this month?
Jack Rosen:
From a local NBC affiliate in Texas, KXAN, a Texas bill would ban schools from restraining students on the ground. Texas Representative Mary Gonzalez of El Paso, “This session introduced a bill that would ban teachers and other school employees from restraining students on the ground at school, specifically those with disabilities.” “Tragically, those restraints are happening more and more violently to students with disabilities,” disability rights Texas Senior Policy Specialist, Steve Aleman said.
Rep Gonzalez added, “I just think about how our schools exist or do exist for our most vulnerable kids to get the support they need. And when I see this video, it just gives me some red flags and that is why we’re doing this piece of legislation with Disability Rights Texas,” Rep Gonzalez added. The video in question was a school administrator throwing a 14-year-old boy into the wall of a “pull down room” and then restraining him on the ground. So, glad to see that Disability Rights Texas is working with the legislature to make some progress on banning this practice.
Stephanie Flynt:
The fact that this is still happening in 2023 is just plain wrong. The fact that this is considered some sort of discipline is quite frankly disgusting. Like Steve was saying, this is something that is happening everywhere. This is something that is happening all over the country, and this is something that doesn’t really get talked about.
Michelle Bishop:
Yeah, I don’t understand why anyone’s getting restrained against the ground specifically, especially when we’re talking about a 14-year-old. That’s a child. I do love all the shout-outs to our amazing network today. Disability Rights Texas as well, just do incredible work. Thank you Disability Rights Texas for leading the charge on this one.
Raquel Rosa:
Yeah, I could not agree with you all more. Just the egregious nature of presuming that’s okay, that’s child abuse. It is absolutely child abuse. As adults, we collectively need to check ourselves. We are talking about young people who are developmentally different than us, they are generationally different than us. The world is different for them than it is for us in a lot of ways. Then you add disability into the mix, and we’re just going to wrangle kid and put them on the ground? It is nothing short of violence and abuse, and people should be ashamed of themselves.
Stephanie Flynt:
Raquel, can you say that louder for the people in the back?
Raquel Rosa:
The whole thing?
Stephanie Flynt:
The whole thing for the people in the back.
Raquel Rosa:
We need to do better. We need to do better. We need to hold one another more accountable. If people really have that much aggression, they can take boxing lessons. Do that with people who consent to physical encounters. Don’t be bringing kids down. It’s not cool.
Stephanie Flynt:
I sense Raquel becoming a co-host.
Michelle Bishop:
Actually, on that note, let’s get into the main issue for today’s episode. We found out about this really cool program happening in Massachusetts called Operation House Call. We got some folks involved with that project on today to talk about it. Raquel, can you introduce our speakers for us?
Raquel Rosa:
Absolutely. First, we’ve got Maura Sullivan. She is a dedicated and passionate leader in advocacy for people with Autism, and intellectual and developmental disabilities. Her expertise is in disability health policy and education. Currently, she’s the Director of Government Affairs for the Arc of Massachusetts, and she’s the Director and Lead Instructor for Operation House Call, the program that teaches medical students best practices in caring for individuals with Autism, and intellectual and developmental disabilities. She teaches at all the major medical schools in Massachusetts, which reaches over 1,000 medical and nursing students every year. Her life’s focus for this work comes from being a mom of two young men with Autism and intellectual disabilities.
Then we’ve got Jonathan Gardner. He is a 20-year-old self advocate, cancer survivor, and decision maker who also happens to have Autism. He has a vision of helping others any way he can. Jonathan is currently employed by the Arc of Massachusetts as an Ambassador for Operation House Call. He is a council member of the Massachusetts DD Council, and he is a Flutie Fellow for the Doug Flutie, Jr. Foundation, where he gets to share his vision of helping other people. Most recently, he was named Co-Chair to the Massachusetts Supportive Decision Making Coalition. In his spare time, he enjoys video games, anime, wrestling, and advocating for himself and other people.
Michelle Bishop:
Thank you all so much for joining us today. I was wondering if we could just get started with Maura. Maybe you can tell us a little bit more about Operation House Call, and how this program got started.
Maura Sullivan:
Absolutely. Thank you so much for having me. Operation House Call is a really unique program. It teaches medical students and other healthcare professionals really how to provide the best care to patients with Autism or intellectual and developmental disabilities. But we do this from the patient and parent’s perspective. It’s true experiential learning combined with lecture that provides foundational learning, and education, but they really learn through our stories. Our stories highlight important learning objectives. They highlight those pivotal moments we’ve experienced with medical providers throughout our journeys.
The real goal of the program is to really begin to address the health disparities and the access issues that face our community. This is why the Arc of Massachusetts has prioritized this program. We have so much we want to teach and share with future doctors and future healthcare professionals. It has been a slow-growing program, but it’s now been about 10 years here in Massachusetts with the Arc of Massachusetts. We are currently in every medical school, and in a few graduate nursing schools as well. We’re so excited to have this presence. It’s not easy to get time in medical school curriculum, so it’s taken a lot to prove the importance of the program and to really build out our program, which is based on families participating.
In Massachusetts, we have 250 families across the state who participate by opening their doors and their hoes to medical students, and really just giving those students an opportunity to learn what life is like living with a disability. They learn directly from individuals and family members about the challenges that they’ve had in the medical community, some of the extraordinary things they’ve been through. They also learn just day to day life and the usual challenges they have for education, and out in the community. We feel like families do such a wonderful job showing medical students their resilience and their strength in the face of some very complex medical conditions, and those combined with intellectual or developmental disabilities can really be really challenging and complex for families.
We’re really excited. We see students coming away from this program just enlightened. They have incredible amounts of respect for the families and for the individuals, and they really have a willingness to learn more. I think that’s what’s great. It kind of breaks any of the fear they may have had about treating patients with Autism or I/DD, and they just grow confidence. That’s one of the main goals, is we want more providers willing to treat patients. Especially when we get to adulthood, we see that it’s really difficult to find primary care, to find specialty care. To have doctors who you may encounter in the emergency room, or as covering doctors really understand the needs of patients with Autism and I/DD, and their families.
Some of the things that I think are so important about our program are the learning objectives that we cover. We do that again through our personal stories, but we talk so much about communication and the importance of communication, whether it’s learning to communicate with someone whose non-speaking and uses gestures, and sounds, and play as part of their communication, or really partnering with family members, all the way to learning how to give patients enough processing time when they ask questions so they can really be engaged and participate in their own healthcare.
One of the great parts of the program is during our lectures in the medical schools, we bring in an individual who has Autism or an I/DD, intellectual developmental disability, and they serve as a co-teacher. You’ll hear from Jonathan later about this, but they share their experiences directly with the medical students, and then open up class to a question and answer session that is always incredibly moving and impactful as they learn more about this individual and their journey, and their needs. Then lastly, I would say they come away from class with a lot of resources. They have tips that we’ve put together about accommodations, and these tips come in from our 250 families.
And, the students write about their experience, which is also a whole other aspect of learning, is just reflecting and beginning to think about their biases that may affect treatment and assessment of patients, and through that essay they process with a parent instructor. A parent instructor will then provide feedback and answer any questions, and allow those students to explore additional resources. I feel like it’s a great model. It’s really remarkable how the students are transformed from meeting families and individuals, and we’re very luck to have the support of so many families and the support of the Arc of Massachusetts.
Raquel Rosa:
Jonathan, I have a couple of questions for you. The first part is, what has it meant to you to participate in this program?
Jonathan Gardner:
I feel very honored and validated to be an Ambassador for Operation House Call. My vision has always been to help others in any way I can, and this is fulfilling my vision in so many ways. I get to share my story and help others share theirs. All together, we can make such an impactful positive change in the way everyone should receive their healthcare. Operation House Call gives me a chance to teach up and coming doctors and nurses from my own experiences, which were some good and some bad, so that the bad experiences that I went through won’t happen to others.
Sharing my story gives me a chance to help the students understand how to communicate with someone who happens to have a disability, and to look past that disability so that everyone is able to get the best possible care. I believe that all behavior is a form of someone trying to communicate. The students get the chance to ask questions when I teach, and this is a way for us to work together to make sure everyone is able to get the possible care possible. The students want to learn how to treat everyone equally, and this gives us all a chance to work together to make sure everyone is able to get the possible care.
Operation House Call has helped me with my own advocacy because I have always been shy. I was traumatized at a very young age. It has helped me become the version of myself that I knew I could always be. I have always wanted to help others to the best of my abilities, and now I get to do just that. I am now a strong advocate not just for myself, but for others. My voice is validated and respected when it used to not be. This is so empowering to me. I can make others feel more comfortable doing their own co-teaching and taking care of their patients. This all fits with my vision of helping others any way I can.
As an ambassador, I get to help mentor the co-teachers and provide strategies to cope through the classes, and there is no better way to learn than from someone with a personal story. Operation House Call is all about families and individuals with disabilities teaching our doctors. They are gaining a very personal education from the heart when the come to our classes. To me, nothing more is meaningful.
Raquel Rosa:
Thank you. You actually answered what I was going to ask earlier, but I came up with something kind of bridging the two together, which is how has Operation House Call given you techniques to advocate for yourself? What advice would you have for other people with disabilities, and how they can advocate for themselves?
Jonathan Gardner:
That’s a very interesting question. I would say for how it helped me become more of an advocate, I guess the supports and the knowledge of the people that are around me. For example, my mom, whom is one my main teachers and one of my main mentors, she is wonderful and she’s taught me so much about this advocacy world. I’ve never been so grateful in my entire life. Then there’s Maura, who you just heard from a little bit ago, who is one of my mom’s mentors, and I’m glad to say she’s one of mine as well, because honestly she’s done a great job in supporting me and others through this wonderful program.
For others, I guess my suggestions would be to don’t feel like you can’t rely on supports to help you with advocating. I guess my suggestion is, don’t feel afraid to ask for supports and do what makes you feel comfortable in the moment.
Jack Rosen:
I was wondering, in light of the success of Operation House Call, how can PNAs and disability organizations get something like this going in other states?
Maura Sullivan:
Like I mentioned, it’s really been a slow growth for Operation House Call here in Massachusetts, but I think the good news is there’s really national recognition of the health equity issues for people with I/DD and Autism right now. I believe more and more states are going to want their medical students and their doctors, and other healthcare professionals, better trained and better equipped. I think there’s definitely a movement to have more trainings available, more continuing emergency department, more trainings for emergency rooms.
But for us, the best way we built out our program was to connect with a champion at that medical school or at our local hospital, or even the local clinics that have more expertise in Autism or I/DD, like our Down’s Syndrome clinics here at Mass General Hospital. We found those doctors who are established champions in the field and in the community, and they were able to help us get a foot in the door at the medical schools. Offering a pilot program was really helpful. We were able to do the program with a small number of students and then get their feedback.
We have a great story of recently one of our medical students at UMASS Medical School, she really wanted this program. She advocated for it herself, actually bringing it to her administration saying she had Googled and found out that medical schools don’t have training programs in Autism or I/DD, and that she actually had found Operation House Call and was shocked to see that her medical school is the only one in Massachusetts that hadn’t implemented it yet. They really listened to her and they allowed us to do a pilot, and they brought us right onboard. So, it was wonderful.
Other programs have been longstanding, and each year we make sure that we’re constantly getting student feedback because the reality is they don’t have a lot of time in their curriculum. We really do need to prove how important this is for medical students, so we rely on the students’ feedback and they tell us what an incredible experience and what an important and impactful one it’s been during their medical school rotation or clerkships. What’s nice is we can always also use their reflection essays internally here to show really the power that these families are having to educate and to inspire these doctors.
I would also say that there’s been some studies and some research done on sort of the attitudes of doctors when it comes to treating patients with disabilities. I think the more research and studies that are done to show that not all doctors are willing to treat patients with disabilities, and some will go to a pretty extreme length to not treat patients with disabilities. We really need to break through where we can with that. Our program is really focused on those attitudinal barriers, but there’s much more to do.
We need to focus nationally on better reimbursement for these providers because they really do need to have longer appointments sometimes, not all the time. But it’s helpful. We talk about communication and processing, and building bonds with their patients, and establishing that level of trust and comfort. Sometimes, those things take a little bit longer. We’d love to see some… There is some federal legislation that would help in this way, but we would love to see more efforts put into reimbursement as well as mandating training across all medical schools.
Michelle Bishop:
Maura and everyone, thank you so much for joining us today. This has been such a fascinating conversation, and I know that a lot of our listeners understand exactly what you’re talking about in terms of medical professionals who aren’t willing to serve people with disabilities, or if they do, they don’t know how to respectfully interact with people with disabilities, or they don’t listen to us when we tell them what our symptoms are and what our concerns are. I know that this is a widespread problem, and a program like this would probably benefit people with disabilities everywhere. So, we appreciate you so much coming on and just telling us more about this. Any resources you have for us, we’d love to put in the show notes so that our organizations in other states can maybe pick up the torch and try to get something like this going in their states as well.
Thank you so much for joining us today.
Maura Sullivan:
We can absolutely share our resources. I would only add to that, one of the great things that families are able to share is their positive and wonderful experiences they have with their doctors. This goes a long way too. We talk about the doctors who have really worked at bonding, who have made all the accommodations possible for our loved ones, and the ones that think outside the box and go that extra mile, and how important modeling that kind of person-first behavior, and how far that can go because if one doctor is a champion and they can reach other doctors and healthcare professionals, we’ll see a great effect.
It’s about making doctors aware of the problems that are out there, and the disparities, and honestly really also staying current with the issues and making sure that we hit on things like intersectionality and the intersection of race and disability, and the disparities that come from that as well. Even COVID taught us so much. So, we’re doing our best to stay on top of all the issues and reach as many doctors and nurses as we can.
Michelle Bishop:
Thank you all so much for your hard work and your advocacy, and thanks for joining today.
Maura Sullivan:
Thank you so much.
Jonathan Gardner:
Thank you so much for having us.
Stephanie Flynt:
Okay, awesome. So that was a super exciting interview with hearing about the instructional aspect of Operation House Call, as well as the self advocate aspect. One of the things that we really want to give you is just a very well-rounded perspective on Operation House Call. We do have a medical student who actually was sharing with me earlier that she participated in a pilot program prior to Operation House Call, becoming I guess you could say more of a normal elective. I can’t think of the right words this morning because coffee is a thing and it hasn’t totally kicked in yet. But all that to say, super excited to hear her story.
Naaz Daneshvar:
My name is Nas. I am currently a third year student at UMASS Gen Medical School. As you said, I participated in a pilot program of Operation House Call in a more optional opt-in format, and then helped bring Operation House Call into the core curriculum at UMASS so that all students are able to participate in it. I grew up with an older cousin with an intellectual and developmental disability, and he was definitely a guiding force in my reasons for going into medicine. Though I changed my mind a million times about what I might want to go into, I’ve stayed true to that driving reason for pursing medicine in the first place.
So, I knew my first year that I wanted to find some way to still be an advocate in medical school. As you said, a lot of providers and people in the medical field don’t necessarily mean to overlook that patient population, but medical curriculums are often incredibly standardized and it’s hard to incorporate new educational material into them. I thought I would start on a small basis, and UMASS gives us the opportunity to lead student-driven electives. I have a particular interest in pediatrics, so I initially led an elective on caring for pediatric patients with disabilities and complex medical needs.
I did a little bit of research and discovered Operation House Call, which as you heard previously in this episode, it’s basically part core curriculum/part interactions with an individual and their family members with some sort of disability. I think that I can speak for most medical students when I say that the best way to learn how to care for patients with complex needs, is just to hear their stories, hear what day-to-day life is like for them, hear what obstacles they face, and hear about both difficulties and successes in the medical field.
That’s exactly what Operation House Call does. I participated in the pilot program through that elective, but now every first year has this Operation House Call program integrated into their first year curriculum. It starts with Maura coming in and giving some tips and tricks on how to interact with patients that might have sensory issues, or any sort of challenges or obstacles that some of these patients may face in medical settings. She shares her story, and shares some perspectives she has from being a part of the Arc of Massachusetts for so many years.
Then students get the chance to break up into smaller groups and meet with individuals with disabilities and their families, and just again, hear their stories, ask questions in a small group setting. A lot of times it can be difficult when you’re given a sort of standard curriculum in a 300 person class. You don’t want to embarrass yourself or kind of expose yourself for not knowing much about this patient population in such a large setting, so I really do think that breaking these conversations down into groups of five or six gives medical students the chance to ask any questions that are on their mind.
I’ve found that through talking with more and through participating in the program families can be more honest. Some medical students have never had the chance to really interact with anyone with any sort of disability. So, it kind of just breaks the ice and I think allows medical students to feel more comfortable going forward. There are so many individuals in the United States that have disabilities that are obvious or not so obvious. Just breaking the ice and giving medical students that initial interaction so that when these patients circle through their practices they feel at least a little more comfortable accepting these patients and billing willing to see them, I think is the ultimate goal of Operation House Call.
I’m glad that more and more physicians that are trained at UMASS will feel comfortable with these interactions, and feel comfortable accepting new patients regardless of the disabilities they face. I think the home visit is the most valuable part, and I think a major part of that stems from the fact that you’re not only discussing a patient’s medical conditions, you’re really discussing what day-to-day life looks like for them, the social challenges they face. I think that’s the most important part to keep in mind when interacting with these patients, understanding that it goes beyond just a medical condition or diagnosis. It really does impact day-to-day life, and getting to learn a bit more about what day-to-day life looks like for them does ultimately impact the care that medical providers should be providing.
I think that’s both the best and honestly the most tricky part, because yeah as a physician or a healthcare provider, your responsibility is to aid patients with their medical conditions or medical problems they’re facing. But a lot of times with these patients, there’s a lot of social issues that come up too, whether that be navigating resources that should be provided to them via the government, advocating for them in job settings or school settings depending on the patient’s age, securing transportation to and from doctors’ appointments. There’s a million social things that go into caring for this population.
And so, a healthcare provider’s job goes beyond just that basic medical care. It broadens into just caring for this individual as a whole, and helping to alleviate the day-to-day stressors they face as best we can. I think that’s a major challenge, and it’s not quite clear what the best solution for that is. I definitely think that some specialties have a little bit more time to navigate those kinds of social complexities and to make more change in just the day-to-day life of their patients. I think it’s at least a good thing to get physicians to start thinking about and brainstorming ways that they can really impact the day-to-day life of these patients and make them easier.
Michelle Bishop:
Yes. No, speak that truth. I think I can speak for all of our co-hosts when I say we love an OG. We love a trendsetter. So, thank you for being an early adopter of the curriculum through Operation House Call. I think it’s such a cool program. It’s going to make such an impact on the medical profession and for people with disabilities. I’m just going to say it, more doctors like Nas, that’s what we want to see. Also, more self advocates like Jonathan, while we’re on the topic. So, thank you Nas for sharing your story, and thank you to all of our amazing guests today. I hope all of our listeners are going to go forth and create something like this in their state.
Naaz Daneshvar:
Absolutely. Thank you guys so much, and thank you guys for sharing our story. I really do hope that more and more medical schools start to incorporate this into their curriculum.
Michelle Bishop:
Oh my gosh, quite the episode today. People were shouted out. People were called out. Our guests today were spitting that truth. Raquel was on fire. Podcast@NDRN.org, if you want Raquel host with us again. Now comes the time in every episode that we all fear. Stephanie, do you have a joke?
Stephanie Flynt:
Of course I do, although you did have a really nice pun there, Michelle. I’ll let people figure that one out for themselves. Here’s the joke for this episode. What do you call a dog that knows everything? Any guesses?
Michelle Bishop:
I got nothing.
Stephanie Flynt:
A Labra-Google.
Michelle Bishop:
Oh.
Stephanie Flynt:
By the way, my partner says that I should have given her credit for the last joke, so I’m giving her credit for this joke.
Michelle Bishop:
That one, last month’s joke, was better. Oh. It all makes sense now.
Stephanie Flynt:
Wow, Michelle just said that she liked my jokes. You’ve heard it here, y’all. You heard it here.
Michelle Bishop:
I think I said I liked your partner’s joke, but…
Stephanie Flynt:
Rewind. Rewind.
Michelle Bishop:
And that concludes the Joke of the Month. You could always hit the podcast at NDRN.org if you have topics you’d like us to create an episode around. Do you have a spotlight story you want to share? If you have a joke for Stephanie, or you want to vote to get rid of the Joke of the Month, all of those are acceptable, you can always email us if you don’t like the jokes.
Stephanie Flynt:
Fake news.
Michelle Bishop:
Jack, how can they follow us on social media?
Jack Rosen:
You can follow us on Twitter, LinkedIn, Facebook, Instagram. We’re @NDRNAdvocates on most of them. Yeah, follow us.
Michelle Bishop:
I think that’s a wrap y’all. Who’s got final words of wisdom before Jack puts the outro music on us?
Outro Music Plays
Guest host Renaldo Fowler joins us this episode, as we talk with Keri Gray, founder of National Alliance of Melanin Disabled Advocates, about her activism and Black Disabled Lives Matter. Then, we turn the focus to Renaldo to talk about the African American Conference on Disabilities.
Links:
Learn more about Keri and her advocacy – https://withkeri.com
African American Conference on Disabilities – https://www.azdisabilitylaw.org/african-american-conference-on-disabilities/
Center for American Progress report on race, disability and policing – https://www.americanprogress.org/article/understanding-policing-black-disabled-bodies/
We Can’t Breathe: The Deaf & Disabled Margin of Police Brutality Project – https://ncil.org/resources/we-cant-breathe-the-deaf-disabled-margin-of-police-brutality-project/
Transcript:
Michelle Bishop:
Hi, everyone. Welcome back to the PandA Pod. Thank you for joining us today. We’re so excited that all of our listeners are here with us today. I am one of your hosts, Michelle Bishop, the Voter Access and Engagement Manager at the National Disability Rights Network.
Stephanie Flynt:
And I’m Stephanie Flynt, one of your hosts also, Public Policy Analyst with the National Disability Rights Network, and I just want to thank Jack for continuing the PandA Pod despite the last episode that we had.
Michelle Bishop:
And we also have with us, of course, our dedicated producer, Jack Rosen, and again, a special guest host this month. Renaldo, please introduce yourself to the people.
Renaldo Fowler:
Hi. Thank you for inviting me. Hi, my name is Renaldo Fowler. I’m a Senior Staff Advocate with the Arizona Center for Disability Law, which is Arizona’s Protection and Advocacy.
Michelle Bishop:
Thanks, Renaldo. We’re so excited to have you with us. Before we jump into today’s episode, Jack, talk to us. Do we have anything exciting going on in the news, anything from the network?
Jack Rosen:
Yes, Michelle. From the Daily Herald in Utah, their voice, Disability Advocacy Day helps people speak for themselves. Each year a group of disability organizations that include the Utah P&A, the Disability Law Center, the Utah Developmental Disabilities Council, the Utah Parent Center, and Utah Statewide Independent Living Council and USU Institute for Disability Research Policy and Practice sponsor Disability Advocacy Day. This is a day where individuals with disabilities, caregivers, families and providers can go to the Capitol Rotunda and network with agencies to learn about disability topics that will be addressed in the upcoming legislative session.
Stephanie Flynt:
And this is so important not just on the federal level, but like this article demonstrates, it’s so important on the state level. Considering that one in four Americans have disabilities. Of course, different policies do affect us, but also two, it helps us grow as disabled people. It helps us learn self-advocacy skills. It helps us learn how to advocate for ourselves and advocate for others alongside us. So there are so many positives that I cannot express. I’m clearly a huge proponent of advocacy being one of public policy analysts here at NDRN, but I’m of course a huge proponent of self-advocacy. I really do think that that self advocacy really and truly is where it starts, and it really is the heart of advocacy.
Michelle Bishop:
Stephanie, I mean, you do a lot of our public policy work and you do our public policy around voting. I get a little bit of a chance to do some of my own Hill work with Congress, chopping it up about voter access, and I always feel like there’s a big difference between talking to one of us as one of the talking heads for NDRN about an issue versus hearing from actual just regular people with disabilities telling you about how policies impact their lives. I feel like that’s something really different for legislators. I feel like days like this are really important.
Stephanie Flynt:
Yes, absolutely. And thank you so much for bringing that up. So one thing that I tell people a lot of the times when I’ve gone to The Hill with folks, they don’t want to hear us talk. They get to hear us talk all the time. They want to hear from constituents, they want to hear from people that are affected by this, that they represent. I don’t care what level this is. On the federal level, they want to hear from people that they represent. On the state level, they want to hear from people that they represent. On the local level, they want to hear from people that they represent about what’s going on in their communities, and quite frankly, a lot of people have this misconception that legislative officials are more likely to listen to us, and that could not be farther from the truth. They’re going to listen to the people who are actually affected by this. Of course, they may listen to us regarding some of the technical pieces, but really and truly your advocacy matters more than ours in some ways.
Renaldo Fowler:
When I read this article, for years and years working at the P&A I’ve worked a lot around special education, and it’s really interesting when I read this article about self-advocacy skills, that’s one of the issues that I brought up doing my IEP meetings. Often when I would work with students in high school, they would talk about transition planning, employment opportunities, and I was like, “Hey, there’s a piece missing. What about working on advocacy skills? I mean, you got to have advocacy skills if you’re going to go to a job, if you’re going to work on independent living skills.”
So one of the areas that I think is so important that we don’t think about is we think those skills are automatic. A lot of those advocacy skills need to be taught by parents, one of the things that article talked about working with parents and caregivers, but I think one of the crucial parts of this whole self-advocacy thing is working with them when they’re young students in special education because so much of special education parents are making decisions and sometimes I think often there we’re not listening to the actual student and the student wishes, even though they talk about it. So I think that’s one of the areas that really taking a look at building self-advocacy skills need to start really around schools and teaching those skills. Just like you teach math, you teach reading, I think advocacy skills we can really need to be worked on in the school setting. So that’s kind of my take in terms of self-advocacy skills, of building those skills.
Michelle Bishop:
Yes, so important. I agree completely. So, so important. So Jack, what else do we have going on in the network these days?
Jack Rosen:
From E&E News, majority of disabled people never go home after disasters. According to data of released by the Census Bureau recently, people with disabilities are far more likely than anyone else to face major hardship, including displacement from their homes due to a major disaster. For example, 70% of deaf people who were evacuated reported living in unsanitary conditions a month after a disaster. More than 74% of evacuees who were unable to walk reported experiencing a lack of food one month after a disaster. Only 7% of evacuees who were not deaf or hard of hearing were in unsanitary conditions. Our former colleague, Justice Shorter, who was the disaster advisor for the National Disability Rights Network, said, “This is completely in alignment with things we’ve noted over several years now regarding individuals with disabilities and disasters. This should encourage folks to understand that all of the stories, testimony, commentary, that people with disabilities have been giving for years are credible, believable, and it shouldn’t take this to make those stories valid.”
Michelle Bishop:
So not to take away from our amazing colleague, Justice Shorter, who knows more about this than I ever will, but I have done some work that touches on emergency preparedness, and I have to say this is both true and terrifying. I think we take for granted that non-disabled people when they’re evacuated during emergencies, go to stay in shelters temporarily and then eventually get to go home.
People with disabilities are often actually put into settings like nursing homes, which on the surface I think people think make sense because they’re set up to accommodate their care needs in a way that a temporary shelter probably isn’t, but I think a lot of people listening to this podcast know that once you go into a nursing home system, it’s incredibly difficult to get out. And a lot of people are put into long-term care facilities during a disaster who have a home in the community and they never get out, and they never go back to their homes. I just can’t imagine that just one natural disaster happens and your home still exists and it’s there in your life and all your stuff are there, and you just somehow never get to go home, and the fact that this happens to so many people with disabilities and we just don’t ever talk about it, to me, is truly terrifying.
Renaldo Fowler:
One of the things with this article is that when you’re removed from your community, there’s a natural support system that’s there, including their church, their family members, and so when those folks don’t have an opportunity to go back home, a lot of those family members, those communities that they are familiar with, they feel strong with, and also when you’re in that different setting, your dietary needs may not be met at the nursing home. So there’s so many impact that not having someone go back home after a disaster. I mean, just the stress itself from the disaster, now your disassociation from your community and your family and maybe some of your religious practice. So it’s why it’s really important that people go back to their communities with the supports that they need.
Stephanie Flynt:
Yeah, and just to kind of piggyback a little bit off of that, I know at least for me as a disabled person, and obviously this isn’t like an emergency disaster situation or a situation where I’ve been in a nursing home, but I think that for a lot of individuals who aren’t disabled, their first assumption when it comes to disabled people is, “Oh, don’t you have a little friend who can come get you? Oh, don’t you have family members who can come and get you?”
And I think a lot of people think that disabled people just constantly have all of these family supports and friends supports around them, and while some of us do… I mean, for starters, that’s not always the case for everyone, but also too is that those people may not be able to afford to come and get those individuals. So really and truly more needs to be done rather than just assuming that somebody has somebody to bring them home or get them home, like something needs to be done on a state level, or who knows, maybe even a federal level if possible, especially when it comes to these types of disasters in order to get these folks home so that they’re not stranded, for lack of a better word.
Michelle Bishop:
Yeah, I think that it’s one thing if a natural disaster that’s beyond our control is the reason that you lose everything, but if we just don’t bother to set up the system for people with disabilities shouldn’t be the reason that you lose everything, and that’s what really strikes me about this issue. Jack, give us one more story. Please do we have some good news?
Jack Rosen:
We do have some good news. Advocates cheer as Ohio erases the R word in state law. After two years of advocacy from Ohioans with disabilities and dozens of disability aging and victim advocacy organizations, including our friends at the Ohio P&A, Governor DeWine has signed the Mental Health and Disability Terminology Act. The Act changes harmful and derogatory language about people with disabilities that has been written into the Ohio Revised Code. The effort to make these important changes began in January 2021 when 26 organizations sent a letter to all members of the Ohio legislature asking them to take action.
Stephanie Flynt:
Okay, this makes my heart so freaking happy, y’all don’t even know. I’m one of those people, and I know I’m not alone in this, but when I hear somebody say the actual R word, I physically cringe. It literally makes me nauseous, and there’s just a lot of really bad stigma behind that word and a lot of low expectations that are associated with that word. So I applaud Disability Rights Ohio for their work, I applaud the state of Ohio for enacting this legislation and that it is the law of the land over there, and I, for one, encourage other states to follow suit. That’s just amazing.
Michelle Bishop:
Yes. If you saw some of the language that traditionally is in Ohio law, it’s got the R word, but also has idiot, deaf and dumb, lunatics, mental defective, crippled, derangement, and handicapped. Just truly horrifically. I can’t even get on Ohio’s case for this because there are a lot of states that have equally horrific language in their state laws. A lot of which I get are old, but it’s never too late, as we see from Ohio, to change it and to put better language into our laws. Language and naming and labels are really powerful and they send a message to, and then they impact the people that they’re about. So props to Ohio and Disability Rights Ohio for their work on this. What an important change.
Renaldo Fowler:
I agree with you very strongly, Michelle. This is very important. Names do have an impact, and names do have a meaning.
Michelle Bishop:
Well, I think that’s a perfect transition into our topic today. Speaking of names and labels, so many that we use, like criminal and thug, are used to divide, to blame and to justify harm done to people of color, and in recognition of the fact that this is Black History Month, we wanted to confront that and center today’s episode on racial justice, particularly in the disabled community. So we’ll be talking about the intersection of race, disability, policing in America and the Black Disabled Lives Matter movement, a sister movement to Black Lives Matter.
So with that, we’re pleased to introduce you to Keri Gray. Keri is a cancer survivor, entrepreneur, speaker and facilitator. She is the CEO of the Keri Gray Consulting Group where they strive to create professional communities of understanding through disability and racial justice education. She’s also founder of the National Alliance of Melanin Disabled Advocates, which creates space for disabled leaders of color and BIPOC allies to gather, learn, and connect and grow around racial and disability justice. Through her various roles, Keri has recruited approximately 4,000 professionals for over 100 organizations and Fortune 500 companies. She has also designed and managed programs for over 1000 professionals that has helped participants secure competitive employment, identifying transferable skills, build an influential network, and gain notable opportunities. Keri’s work has been featured in Teen Vogue, the New York Times, People Magazine, Time Magazine, PBS News Hour, a personal favorite of mine, and the Diet Coke Campaign hashtag Unlabeled, but we want to talk with Keri today about her work with Black Disabled Lives Matter.
Stephanie Flynt:
Yes, and Keri, thank you so much for taking the time to join us to talk about this very, very important work that you do with Black Disabled Lives Matter. I would love for you to share with our listeners a little bit more about what Black Disabled Lives Matter is and also how it relates to the larger Black Lives Matter movement. I know a lot of us are familiar with the Black Lives Matter movement, but a lot of us might not be as familiar with Black Disabled Lives Matter. So I’d love for you to give us a little bit of background to start.
Keri Gray:
Absolutely. Well, good afternoon to everybody. I’m excited to be here and chat with you today. Thanks for having me. Black Disabled Lives Matter. What I love about it is that the Black Lives Matter movement was founded on an intersectional philosophy, so that means that essentially the folks who came together and said, “We are going to be a part of a larger effort to advocate for Black people,” they made an intentional decision to recognize the diversity of Blackness. And so from the very beginning of the movement, it started as a way where we said, “We are going to talk about, advocate and organize around a wide variety of issues.” So Black Disabled Lives Matter is a part of the entire body, the ecosystem of the Black Lives Matter movement.
One of the biggest ways that I would like to describe the movement is to just share briefly about our experiences together in 2020. I know it’s a rough time to reflect on, just so much, and we went over it, but it’s important. It’s important that we never forget the name George Floyd, the names Breonna Taylor, the countless people who have been murdered by our policing system and just treated in incredibly violent ways. And so in the year of 2020, there was just a historic uprising that occurred where Black people and allies across the country were organizing protests, were getting movements together, were claiming power essentially. And so on June 6th 2020, myself and a incredible, amazing woman named Justice Shorter, two Black disabled women based in the DC area said, “We want to organize our people. We see Black folks, we see everybody coming together to talk about the issues, to push for legislative change, all of these different things. We want to create a space where disabled folks can be a part of this.”
And if you remember, that was incredibly important because in 2020 we were dealing with the aftermaths of George Floyd, all of the things that were occurring, but we were also in the midst of a pandemic, a space in a time where disabled people… It could be nerve-racking to go outside and just… It was a scary time, if you remember. Us thinking about, “Are we going to catch COVID? Are we going to be left vulnerable to the things that are going around?” And so even in the midst of that, the movement of Black Lives Matter was so strong that our community said, “There are some things that you got to be willing to get involved in to make sure progression happens.” So how do we do that in a safe and accessible way? So we organized close to 100 people, Washington, D.C., Black disabled folks, allies, all sorts of people came together, and we marched to the White House and participated in all of the organizing that was going on that day.
And that is an example of what Black Disabled Lives looked like because we wanted to ensure that we had medics out there, we had interpreters out there, we had lawyers, journalists, a comms crew, we had waters, snacks. We had so many people who came together that said, “What do we need to do to ensure that we’re talking about Black people, we’re talking about Black trans life, we’re talking about disabled lives, we’re using ASL, we’re using English?” All of these different things to ensure that our movement is intersectional. So when you talk about the Black Disabled Lives Matter movement, it is part of the body of the Black Lives Matter movement and an opportunity for us to raise awareness and participate in the overall picture of advancing Black people.
Renaldo Fowler:
Can we talk for a moment about the intersection of race and disability, and how policing has habitually harmed and impacted people of color with disabilities?
Keri Gray:
Absolutely. There was a study done by the Center for American Progress, and in that study it found a, quote, 50% of people killed by law enforcement are disabled, and more than half of disabled African Americans have been arrested by the time they turn 28, double the risk in comparison to their white disabled counterparts. So there’s a lot of discussion. If you’re interested in the movement and you’re interested in Black Disabled Lives matter, policing has always been a core component to that, and recognizing a system around our policing in the United States that has been incredibly ineffective, and so when I mentioned this study that was put together by the Center for American Progress, I highly encourage folks to look up the reports that have been written about this.
This was written by a woman named Vilissa Thompson, just incredible research, and it’s showing the deaths of what our community is experiencing it. It’s showing the amount of violence. It’s showing something that should not in any case be considered the norm, but we’re looking at violence, we’re looking at circumstances and situations where a particular group is being treated and overpoliced, Black disabled people. So when we think about what’s happening at the intersection of race and disabilities, a resource that I want to encourage folks to look at is a project that I was able to create in collaboration with a guy named Dustin Gibson, and it’s a project called the We Can’t Breathe Project. You can look it up online. It is called the We Can’t Breathe: Deaf & Disabled Margin of Police Brutality, and essentially what you will find is a toolkit that yourself or yourself and some of your colleagues, your comrades, whoever you get down with in this movement, and you’re able to check out this toolkit and it walks you through understanding what police brutality is.
You end up watching an educational video. And I will give a couple trigger. Again, we’re talking about police brutality, we’re talking about the violence that people are quite literally experiencing on their bodies and the aftermath of what can happen in terms of ending up with PTSD from these types of situations. So it’s a little heavy, so prepare your heart, prepare your spirit for it, but at the same time, it is a useful tool that I encourage to walk through and be able to really understand what’s happening and how you can articulate this experience to others. So when you check out this toolkit, there’s a video that you can watch that takes you through the narrative of five disabled people who also have other intersectional identities. So naming the fact that a part of the reason that our community is experiencing police brutality is because they are disabled and Black, is because they’re disabled and queer, because they’re disabled and a woman, and these things, our identities, come together and for whatever reason invoke a reason for folks to think that they can take advantage of you.
Now, I don’t want to get too deep into that. I ain’t trying to preach nothing, but what I am saying is that you watch this video and it helps you understand what’s happening within the community, helps you understand how it happens because of the intersection of disability and other identities that are going along, and it gives you language, it gives you tools, and it helps you start to be able to see what is our community response to this. How do we be a part of the solution rather just saying, “Oh, that sucks.” We don’t want that type of response. That’s not the movement. The movement calls for us to come together and organize and advocate and be a part of the process. So I want to encourage people to check out that resource, the We Can’t Breath Project: Deaf & Disabled Margin of Police Brutality, and to really get a further way of navigating this conversation.
Renaldo Fowler:
Thank you. Thank you, Keri. One of the things I think is really interesting, Keri, I look at the definition. One of the things I wanted to do was look at the definition of policing, and that was just an interesting concept that I’ve never looked at. What does a word policing mean? So I looked up a definition and it says, “An activity carried out by police officers in order to preserve law and order,” and there’s also a subsection that says, “An action of a person or group in authority in order to ensure fairness and legality in an area of public life.” I think that’s real interesting as you gave that discussion about law enforcement. So we’ll talk a bit more later on about law enforcement today. So I want to move to another topic, is to talk about the disability community is a large and diverse community. How does privilege play a role in the community and in terms of disability and policing?
Keri Gray:
Yes. So privilege. Privilege is important to wrestle with, to acknowledge. Privilege being a thing that if you ignore it, it perpetuates cycles. So a quote that I want to give about privilege theory argues that each individual is embedded in a matrix of categories and context and will be in some ways privileged and in other ways disadvantaged. What I like about this definition is it recognizes that the human experience is complex and it recognizes that in some ways where having privilege means that you have an advantage, and because of our complexity, you can probably also understand what it means to be disadvantaged. People, I think, wrestle with it a bit, but understand that concept. In some ways, I’m good, I’m okay, and in some ways I have a disadvantage. I think there are things that able-bodied folks, in particular, able-bodied people don’t have to think about, i.e. privilege. And so when we’re having this conversation, does privilege play a role in all of this? Definitely.
There’s a couple of areas that stand out. The first one being accessibility. So privilege means that when you go out and about and just enjoy your day, you don’t typically have to think about the infrastructure of places, the tools and the resources of showing up to work every day or whatever the case may be, and will it be accessible to you, and so that has largely been an issue within our community of still having to fight, advocate, navigate is accessibility even a part of the equation? Will I have access to a sign language interpreter to be able to talk to the police? Will I have access to even be able to get into this police car that you’re trying to do? These are literally intangibly still issues that are creating a barrier and conflicts between our communities. Pain management is a privilege. Having to appear able-bodied.
One of the things about the disability community is that our bodies can just start to react beyond our control things. We will start moving, we will start twitching. It is the disabled experience. And what I love about being a part of the disabled community and the movement is that we understand those kind of complexities and know how to just go with the flow because people are people, but when you have a militarized police force, they start to immediately put expectations on how your body should behave, and so if a police officer tells you, “Stop moving,” but you have the type of body that will switch whatever the case may be after he has given you an order, there’s going to be a problem that escalates.
And I’m not mentioning these hypothetically, but again, when you document the history and you see what’s happening, you’re seeing that privilege plays a part in the relationships, the communication, the arrest process, all of these different things. I think of a particular name, Natasha McKenna, a Black woman with mental health disabilities who was institutionalized in Fairfax, Virginia, not too far outside of the DC area, and she just an amazing… If you love Black people, I tell you, she’s beautiful. She’s amazing. And we watch her be institutionalized in a video, and she’s naked and she’s handcuffed by the police and they are, quote, unquote, attempting to transfer for her from this institution to another one. And we watch over the course of not long in this video that she dies in the process naked and handcuffed, and they still can’t do what they supposedly need to do. They still end up killing her.
And I named this, I named this because I believe in Black rage. I believe in the power of being able to say, “That ain’t right and I’m going to do what needs to be done so that there’s real change in our communities and in our systems that are failing us and our people.” So privilege is powerful. I don’t want to make people feel bad for being who they are. You can’t always help it. That’s not the point of, I think, this discussion that we’re having today. I think the point is being able to identify the disparities that are happening, the issues that are occurring and being a part of the solution, and so part of that is definitely identifying and changing our circumstances around privilege.
Michelle Bishop:
Keri, I’m glad Renaldo brought up policing and that you talked a little bit about systems. I was wondering if you could discuss the importance of ensuring that people with disabilities are consistently and appropriately accommodated when interacting with policing systems, and how can we collectively and systemically protect people of color with disabilities from police violence?
Keri Gray:
It is tough. That’s a tough question. I want to look at it two ways. The first way I want to look at it is I want to encourage everyone who’s listening to the podcast and things of that nature to ask a real question around is our policing system working? Ask it and wrestle with it, bang on tables around it, debate with your peers, your comrades. Have the discussion because on one hand, there’s the option of we can make some changes, we can adapt our system to make it better, but on another hand, there are those of you who are in the space who may be more abolitionists and who may just answer that question and say, “Our policing system isn’t working and the solution is something so different than what we currently have. We got to get moving on this alternative practices and processes to policing.” And I don’t want for folks to make it seem like that is leaps and bounds from where we could potentially go because we’ve seen communities and cities practice this.
One of the amazing things that came out of 2020 is that we saw a series of different schools and campuses who started to say, “We are not going to allow policing in our schools anymore.” That’s powerful. I don’t know where people went to school at, but it’s very common to have officers at school for a variety of different reasons, all sorts of things can happen, but that’s another area where people are experiencing disparities in the sense of who gets in handcuffs, who gets suspended, who gets sent to the alternative school, who ends up in juvie, all of these different things, and the disparity is that it’s definitely happening to our students of color and it is happening to our students of color with disabilities for sure.
And so for schools to turn around and say, “You know what? We might need some help. Our schools, our educational system, they need good people to ensure that things go smoothly.” I didn’t go to a soft school, I’ll just say it like that. Where I went, I’m from Longview, Texas, I’m from the South, and I’m not saying we didn’t need some sort of authority, folks who could really get us together, but to say that it’s policing is another answer to that. I’m trying not to go in circles with you here.
Well, all of the that to say, one, I want folks to really consider alternatives, and then two, I think that acknowledging the fact that we are in reality, that policing is a big part of our systems and things thus far, we definitely need to make some philosophical changes on what’s happening. Just the treatment, the lack of people understanding, to your point in terms of accessibility, not even thinking that someone might need an ASL interpreter, American Sign Language, not even thinking that it’s essential that you’re asking about medication needs. All of these things are part of it, and all of them lack a philosophy of disability justice. So I think there’s a couple of routes that folks should take and we need your advocacy, I would say be an active part of the solution.
Renaldo Fowler:
Okay. Thank you, Keri. Now, I’d like to move a little bit in a different direction. Can you share inclusive community-based strategies that does not involve policing as the sole means of safety?
Keri Gray:
Yes. So again, sometimes I wish this was live. I kind of want to ask a question and see what folks are a part of, but a big response to have to that is all about local organizing. We tend to see the big moments in life. So 2020 was such a viral moment, if I could put it like that. All eyes were looking at Louisville, Kentucky, were looking at different places across the country and seeing how united folks were around Black Lives Matter. We saw corporations, we saw representatives, we saw community members. It was a big year. However, we know that what really keeps our community thriving is the continuous engagement investment that we give in our neighbors day after day, and that type of love, that type of protection, advocacy happens when you are involved on a local level and when you are a part of that solution.
So I’m based in the Washington D.C. area, and we have an incredible organization all out here called Harriet’s Dreams, and they have a fellowship where they bring in organizers every year and teach you the fundamentals of how it works, how you can be a part of it. Organizing isn’t easy, y’all. It is profound. It is one of the most powerful, magical experiences that you can be a part of to be united with your fellow comrades, but it ain’t easy. It is about being able to strategically understand what is our goal or objective and how do we get there, and so they’re an example of an organization where they make sure that you have those type of knowledge, that you’re meeting people across the community, that you’re understanding different ways that you can support those, that can be an alternative to efforts such as what happens in our policing. So that’s just one example, but there are so many. So I want to encourage folks when you’re thinking about what is the alternative, it is definitely about getting involved in what’s happening in your community.
It’s about having the relationship with the schools, it’s about having a relationship with the disability programs within your community, and there are even national organizations that have chapters all across the country. If you think of the National Urban League, and you can likely find your local Urban League, you can likely find your local NNACP. So there are options of ways to get into this work, and I think when we’re thinking about community-based strategies, these are the groups that are understanding who their community are and what sort of solutions do you need. Are the solutions about needing more economic empowerment in your community, about needing more food sourcing, about needing more spaces for childcare, mentorship? What does your community need and how can you be a supplier? We have this statement in organizing spaces that says, “We keep us safe,” and so it is a call to action for us to get involved, if you’re not already, but to find a place where you can really be a support to those around you.
Stephanie Flynt:
Yeah, and I love that you brought up getting involved and establishing those partnerships within the community, within the schools, with different organizations, and so I’d love for you to expand a little bit on that. What advice do you have for members of the disability community specifically or for our network of organizations who work in the disability community in terms of getting involved and working towards this justice nationwide?
Keri Gray:
I think I’m thinking of two pieces of advice. The first one, I want to encourage you to find your political home. Where’s the space that loves on you and challenges you? Where’s the space that teaches you about Black queer politics, about Black disability, Black Disabled Lives Matter, about disability justice? Where are the spaces that keep you in the know about what’s happening in your community, that asks you, “What is your perspective on this?” That provides an opportunity for you to get involved, find your political home.
From one recommendation I have, so at the top of this podcast was mentioned that I’m a founder of an educational platform called the NAMD Advocates, the National Alliance of Melanin Disabled Advocates, and we were founded for a reason of really spreading awareness around disability justice from the perspective of people of color. And that’s necessary. It is necessary for us to find each other, people of color with disabilities and to create spaces for each other, to recognize the things that we experience and that we go through. It’s also important for us to recognize the disparities, the lack of leadership opportunities, the lack of executive positions, the amount of violence and discord and all of the things that we experience across industries within the movement, within policing, within the workplace.
All of these things happen. And so by us getting together… So the NAMD Advocates was created for disabled people of color and BIPOC allies to learn, grow, and gather around racial and disability justice. So I want to encourage you to check out our website, see some of the things that we’ve been a part of. I named earlier us convening folks in 2020 around the Black Lives Matter movement. We also host the Annual Leadership Summit. We find different ways for us to educate, inform and equip people with skills and necessary skills and resources to help you be successful in this work. So the NAMD Advocates can be a space for you. You can go to my website, which is withkeri.com. That’s W-I-T-H-K-E-R-I.com, and you’ll see our information across the website.
But the overall piece to this, as I mentioned, is find the space that fits for you, right? NDRN is an incredible network to be a part of. There are so many spaces that are doing incredible work. The first organization where I learned about my politics in terms of Black liberation was an organization called BYP100, Black Youth Project, and it’s there that I really saw the in depth of policing and all of these different things. So the biggest piece that I want to encourage you is to stay involved, to find a way, and to find your political home.
Michelle Bishop:
Keri, this was incredible. Thank you so much just for all of your insights and for those ways for people to plug into the movement and get involved. Everything you’ve shared with us, we will put in the show notes. The folks know where to find that information if they want to learn more, and more importantly, if they want to do more. But thank you so much for joining us today.
Keri Gray:
Thanks for having me. Appreciate it.
Michelle Bishop:
And for our spotlight story today, we’re shaking it up a little bit. I know you’re used to people with disabilities talking about some of their individual lived experiences, but we couldn’t resist the opportunity since we have Renaldo here with us today from Arizona to give him a chance to do the spotlight story and talk a little bit about the African American Conference on Disability. If you’re not familiar with it, it is such a unique conference that happens annual in Arizona that we think is just amazing and also really shines a spotlight on the intersection of race and disability. So Renaldo, if you can just take it away and tell us a little bit about what this conference is, how it came about, how it’s grown, and what it’s meant to the community.
Renaldo Fowler:
Thank you, Michelle. Yeah, the African American Conference on Disability, it was co-founded almost 12 years ago by myself and David Carey, who works for the Arizona Independent Living Council. And so to make it really a story short, about 12 years ago David and I were sitting down having a lunch, and we just struck up a conversation. I’ve been in the disability field for almost four decades now, and David’s the person with the disability. I think he’s been injured for about almost 30 years, and one of the things, the common thread, that we saw in Arizona, Arizona African American population is around 5%, 6%, but we’re a growing state. But one of the things that we noticed, there was a common thread. We would be at different events, statewide, city, municipal, it didn’t matter. We would not see African American families there. We rarely saw persons with disabilities, African Americans with disabilities at these events.
And so we had this conversation, “Well, let’s do something about it,” and David said, “I have some monies. Maybe we can get some lunches together.” I said, “David, let’s get some speakers together.” And we put the first conference together in three weeks. And so we had about 100 people attend the one-day session, and we got one of our legislators to come in and talk about some things. And so based on that 15-minute conversation, the African American Conference on Disability was born some almost 12 years ago, and so for the last 12 years, we’ve met in person. And so we’ve grown for about 100 people to about between 400 people prior to the COVID-19 pandemic. And so we’ve had speakers who attend the conference throughout the United States. We cover race and disability, we cover many different topics. Much of our work is in line with our priorities with the P&A. We partner with community-based organizations.
We do a lot of partnerships out in the community, and so when people talk about the African American Conference, I talk about the African American Conference for the African American community and for those folks who serve the community. So that’s really a big focus that we have of the conference, and one of the unique things that we pride ourselves doing is we create a safe environment for African American families and persons with disabilities to come in and talk about their needs. So the format of the conference for the last several years is we’ve had a one-day conference, and in that one day, we have three sessions opening lunch session, closing sessions, and we’ve had 24 workshops. So we run a lot of workshops at a time. We try to keep those spaces small and we try to keep them personal and unique where the audience and the speaker have an opportunity to bond. We talk about networking in the community.
So we do these things at the African American Conference. We’ve had commissioner Thomas Hicks there, we’ve had previous administration of community living speakers there, we’ve had our former county reporter who’s now our Arizona Secretary of State, he’s been at the conference. With a state with such a small population, a lot of people reach out to me from different states with larger African American communities, and just talk about how we’re able to do this in Arizona, and I’m just going to say this, we have a great developmental disability network in Arizona. I just want to kind of put a shout-out to that. Our university USEP program in Arizona, our DD Planning Council and our Protection and Advocacy, this is a really great DD Network project.
And so as I mentioned, prior to the pandemic, when the pandemic came on board, we had a lot of discussion, “Do we cancel it? What do we do? We felt it’s very important to look at these topics,” and so we decided to go virtual. For the last two years, we’ve been virtual, and I’m just going to say this to you, that one of the things that the COVID-19 pandemic allowed us to do when we went virtual is to reach a greater audience. The last African American conference, the last two conferences we had virtually, we had 11,000 people attend those two conferences over the last two years, and last year we had over almost 7,000 people attend last year’s conference. We had 11 countries, 32 universities.
So when you look at the impact of the conference at the state level, at the national level, and we even laugh about it even at the international level, I think we’ve made some significant impacts, especially in Arizona with the African American community. We’ve created a safe place, we have good support from the African American community in Arizona, and also we are partnering with some historical Black colleges and universities with the African American Conference, and I’m really proud to say that I’ve been working with several African countries who have attended in-person and who’ve attended virtually, and also we have someone I believe from Malawi, Africa who’ve emailed me back and forth, and they’re looking to try to duplicate some things like this in Malawi, Africa, and they’re going to be attending the conference in person.
So this year, what we decided to do for 2023, we’re going to be meeting in person on June 16th in Phoenix, but we decided to go ahead and continue with a virtual component of the conference in honor of Black History Month. So on February the 8th and 9th, we’re going to have four presentations, two a day, and we have some great speakers for the conference in February. So that information will be available this week and we’ll get that information about the virtual conference, and we’re looking to open up the in-person conference sometime in March. So any more stories you would like to hear about the conference, Michelle or Stephanie?
Michelle Bishop:
I think this is such an amazing conference. It’s, in my experience, truly unique. I can’t think of anything else like this that’s happening. Is there something similar out there, Renaldo?
Renaldo Fowler:
We have been around for 12 years, and one of the things that we talk about, Michelle, is this is to my understanding… Now, there are some other organizations in the last few years, but for the last 12 years, we’ve pretty much been the only comprehensive conference that addresses the intersection between race and disability in the US, and I think that’s what some of the things are really surprised. So I’ve been working with folks out of Philadelphia, talked to them. One of our speakers this year is out of Atlanta. She’s going to be opening it up, and we’re really excited about that. We’re going to be bringing in some families from Wisconsin to talk about their services and how they built a project in Wisconsin for African American families.
I’m not really familiar with the different ones. I know the disability rights, and one of the Carolinas has one. I think California had a conference, or had one or having one, but really, one of the things that we want to do is have a comprehensive conference. We talk about mental health. We actually have a legal track as a part of the Protection and Advocacy. We’re working with the Arizona Center for African American Resources, which is a community-based organization. Now, one of the things, Michelle, I’m going to really say this to everyone out there. We are a discipline-based organization. So when you go out and you work with other grassroots organizations, oftentimes there’s a building of partnerships and understanding, and designing the terminology. The terminology that we use in the Protection and Advocacy is slightly different than they use in independent living circles.
And also, if there’s a community-based organization that may not be disability-based organization, it may require you to work with them in learning people-first language. They may use disabled or handicapped people. That’s because they’re not familiar with… So there’s a learning process. So I want to let everyone know when you reach out to organizations and they may not necessarily use a correct terminology, don’t take offense to it, use it as a teaching moment because they’re not in your world, and so that’s one of the things that we’ve done so much with the conference is reaching out to non-organization within the disability community, to supporters to get speakers. We work with mental health, we do healthcare, we’ve had law enforcement participation in the conference.
So I would really encourage everyone, if you’re interested in really learning how we do the African American Conference on Disability, as I mentioned to you earlier, February the 8th and 9th, we’re going to have a virtual component of the conference that’s going to be available coming up within this week. And then June 16th, which is the weekend of Juneteenth, that was interesting how that played out. So it’s the Friday before Juneteenth, which is going to be over a three-day weekend. So if you want to travel to beautiful Arizona in June, we would love to have you. It’s going to be at the Hyatt Regency in Phoenix. So we’ve grown from 100 people to over 400 people attending the African American Conference in person, and last year, as I mentioned, we had over almost 8,000 people attend the conference worldwide.
Michelle Bishop:
That is truly incredible, Renaldo. Congratulations just seeing all of your hard work really come into fruition with this conference. And to all of our listeners, I really encourage you to participate in this conference in any way you can. I have, and I’m a big fan.
Renaldo Fowler:
And Michelle, you know what? We are always looking for speakers as we prepare for 2024. So if anyone’s interested, please reach out to me and we would love to have you to see what you have to bring to the community. It’s just been such a great joy to see how the conference has grown and really the need for the conference, and as I mentioned to you, we provide a great safe space for people to come talk about some concerns that they may have, that they may feel a little uncomfortable in different settings.
Michelle Bishop:
That is a great idea. We’ll include some details about the conference and the show notes for today’s episode. So folks who want to participate or may be interested in even speaking in a future conference, they know how to reach out and how to get involved. Thank you, everyone. I think that’s our episode for today. I hesitate to ask because it almost destroyed the PandA Pod last episode, but Stephanie, do you have a joke today?
Stephanie Flynt:
I do. See, see. Okay, I think that Michelle secretly likes my jokes. I personally think she does. Look, if you think the alternative or whatever, feel free to reach out to us. But anyway, here’s the joke for today in honor of winter. How do you follow Will Smith in the snow?
Jack Rosen:
Oh, God.
Stephanie Flynt:
Any guesses?
Michelle Bishop:
Where is this going?
Stephanie Flynt:
You follow the Fresh Prince.
Renaldo Fowler:
Okay. All right.
Stephanie Flynt:
Okay. All right. People from 2000s and up, you may not get it, but just use Google. It’s your friend sometimes. Jack’s like, “I can’t decide if I want to edit this out or not.”
Michelle Bishop:
So if you have any good jokes for us, or even better topics for future episodes, you can always hit us up at podcast@ndrn.org. I promise I won’t resign over the jokes. So we will all see you next month. Thanks, everybody.
Stephanie Flynt:
Oh, we have to shout out our social media. People need to know what we’re up to. So feel free to search us up on Facebook, Instagram, Twitter. We are @NDRNAdvocates. I think we’re also at the same tag on LinkedIn, but Jack, feel free to correct me if I’m wrong. But yeah, follow us for all the things.
Jack Rosen:
Technically, we’re just NDRN on LinkedIn, but whatever.
Justice Shorter returns as a guest-host for this episode, where we interview anti-human trafficking activists Ali Chiu and Susan Kahan. Then NDRN alumnus Ian Watlington joins us to discuss his experiences with inaccessible taxi cabs in DC. For a full transcript, check out our website.
DCist article: https://dcist.com/story/22/12/06/d-c-is-falling-short-of-its-taxi-accessibility-requirements-what-went-wrong/
Transcript:
Michelle Bishop:
Happy New Year everyone. Welcome back to a whole brand new year of the PandA Pod. Can we get like a round of applause, a drum roll, something? We’re back for another year.
Justice Shorter:
Hey, congratulations.
Stephanie Flynt:
We’ve got to give the people what they want and what they want is more PandA Pod.
Michelle Bishop:
Woo, that’s that’s absolutely the truth. And it’s because of your amazing host, oh my goodness. And we have a special surprise for the hosting team today. I am Michelle Bishop, voter access and engagement manager and one of your many hosts at the PandA Pod.
Stephanie Flynt:
And I’m Stephanie Flint, public policy Analyst at NDRN. And I’m also one of your hosts for the PandA Pod and…
Michelle Bishop:
Our guest host today is an OG. Introduce yourself.
Justice Shorter:
I am indeed. I am Justice Shorter, National Disaster Protection Advisor at the National Disability Rights Network. Hello, ladies.
Stephanie Flynt:
Hello, hello.
Michelle Bishop:
Hello. And of course, our faithful producer, Jack Rosen, who I really hope has the button where you bleep out people since Justice is back.
Justice Shorter:
First off, let me be clear, we’re not bleeping out Justice, we’re bleeping out the profane words that Justice often uses. There’s the very stark difference. I want to be very clear about it.
Stephanie Flynt:
Michelle, some sort of audio meme is going to come out of what you just said and it’s basically just going to be ‘bleeping out Justice’ and it’s just going to be viral on the internet now.
Jack Rosen:
I kind of want to edit it so it starts with Justice saying, let me be clear that’s just a long bleep.
Stephanie Flynt:
No, just be like, let me be and then just bleep things from there.
Justice Shorter:
It’s one way to go.
Michelle Bishop:
Just pick random words in every sentence Justice says and bleep them out for no reason. So it sounds like she said something terrible.
Justice Shorter:
Yeah, let me just veto that option right out the gate, there are more than enough terrible words that will likely slip out and you’ll have more than enough content. Leave all of the sweet and gentle and non-harmful words that I say, let them be. The others will stand on their own.
Stephanie Flynt:
If it makes you feel any better, they have been threatening to bleep out every single time I say chicken nugget. That makes very sad-
Justice Shorter:
[inaudible 00:02:20].
Stephanie Flynt:
I know, oh my gosh. Okay-
Justice Shorter:
No, I’m joking.
Stephanie Flynt:
No, fake news, fake news. We’re taking a poll.
Michelle Bishop:
We’re probably going to make a bleep button that is Stephanie saying chicken nugget, actually.
Stephanie Flynt:
There we go
Justice Shorter:
Concerning on so many levels.
Michelle Bishop:
More [inaudible 00:02:34]. Justice you see what it’s been like for me while you’ve been on hiatus, I need for you to come back.
Justice Shorter:
Awesome.
Michelle Bishop:
And the name of this episode is definitely bleeping out Justice.
Justice Shorter:
Mm-hmm, mm-hmm, taking Justice down every time, very concerning.
Stephanie Flynt:
Okay, let’s be clear, nobody can take Justice down, okay?
Justice Shorter:
Mm-hmm, let them know. Let them know, say it with your chest, Stephanie, say it with your whole chest.
Michelle Bishop:
Nobody puts Justice in the corner.
Stephanie Flynt:
No.
Justice Shorter:
You know what’s interesting? Quick side note, is that I was working at a disaster several years ago and one of the division leads for another project called my sighted assistant, my handler. It was like, “I think that’s Justice’s handler.” And I had to step in and say, “Nobody handles Justice. This is my sighted assistant and he is with me to support me with whatever visual needs that I may have at the moment.” But yes, I had to very much let him know who I was and what could and could not be said in that regard.
Michelle Bishop:
Nobody can handle Justice. That’s accurate, nobody can handle Justice.
Justice Shorter:
It’s a thing, people slip in all types of random words and phrasings when it comes to people with disabilities, not recognizing how coded and how, in some cases, just purely disrespectful it can be.
Michelle Bishop:
Accurate.
Stephanie Flynt:
For real though.
Michelle Bishop:
Jack, hit us with some news stories. What’s been going on in the network these days?
Jack Rosen:
On July 26th, the 32nd anniversary of the Americans with Disabilities Act, leaders of Buffalo’s disability community held a news conference and called on their city to respect their rights under federal law. “I’m ashamed to say that Buffalo does not have an ADA coordinator as of yet,” said Bj Stasio, Buffalo resident and co-vice president of the South Advocacy Association of New York State, which represents and is run by people with developmental disabilities.
Michelle Bishop:
Well this is an ongoing issue for the state of New York in general, I know. It’s horrific that Buffalo doesn’t have an ADA coordinator, but if you all remember back in 2020, at the height of the pandemic, Disability Rights New York actually had to file a suit against the governor at the time, Andrew Cuomo, because they weren’t using ASL interpreters during the pandemic briefings. What exactly were deaf people supposed to do?
Stephanie Flynt:
Oh man, I remember that.
Justice Shorter:
So do I, we actually worked very diligently to make sure that the strategies that they were evoking was shared across the entire network. And we did that by a COVID Central, which was an internal platform that myself and Tina, who used to work on our communications team and a couple of other folks were really instrumental in getting off the ground. But that was really an information portal and center to provide rapid responses in terms of strategy and tactics that were happening all over the country, so that P&As didn’t have to really reinvent the wheel, but could really utilize some of the techniques that folks were already having success with in different parts of the country. That case that you just mentioned was one of them.
Stephanie Flynt:
Yeah. Jack, do you have like a boo button? Are we allowed to boo people on this podcast or are we trying to be nice?
Jack Rosen:
You can just go ahead and boo, I can-
Stephanie Flynt:
Boo, I don’t like people.
Michelle Bishop:
Okay, what else do we have in the news these days?
Jack Rosen:
Also in the news from the Citizen Times, landmark child welfare suit targets North Carolina after USA Today Network investigation. Our affiliates, Disability Rights North Carolina are part of a lawsuit claiming that their state is failing the needs of children in facilities, alleging unfortunately, abuse at those facilities and trying to get these kids the home and community based services that they need.
Michelle Bishop:
This one I know is particularly heinous also because I believe it involves kids that are in the foster care system, who don’t have a parent right outside the facility advocating for their rights and for their needs.
Justice Shorter:
That’s right, Michelle. There is just so much to be concerned about when we think about America’s foster care system, especially as it pertains to young people and children with disabilities. We hear about so many different stories of neglect and abuse. And so this is, of course, just yet another way that we need to remain vigilant and make sure that as far as we’re concerned as a network, that we stay on top of our goal and our mission to protect the rights of people with disabilities. And of course, that is inclusive of children and young people with disabilities as well.
Michelle Bishop:
And shout out to Disability Rights North Carolina. This one is actually a federal class action lawsuit. Can’t imagine what a heavy lift that must be. But thank you Disability Rights North Carolina for the work that you’re doing.
Stephanie Flynt:
Yes. As I like to say, y’all are killing the game.
Justice Shorter:
That’s right. They have such strong advocates and attorneys. They’re just simply stellar, superstar team over at Disability Rights North Carolina. I love them dearly. Shout out to you guys.
Michelle Bishop:
Jack, hit us with one more news story. Do we have any victories in the news lately?
Jack Rosen:
We do. From 2 News, WDTN, Huber Heights family wins lawsuit against state agency regarding help for son’s autism. In Dayton, Ohio, a federal judge ruled in favor of a Huber Heights family who claimed a state agency denied their son support for his autism spectrum disorder. The son reached out to Opportunities for Ohioans with Developmental Disabilities for support. OOD is a state agency that provides resources for people living with disabilities, including VR services to help prepare for employment. While the agency provide him with supplies and computer, it denied him money for a program that would help him with college life.
Michelle Bishop:
Yeah, that’s interesting. They talked about how there can’t just really be like a blanket policy that says there are certain types of programs that we just don’t fund for college and university students as if people with disabilities don’t go to college.
Stephanie Flynt:
Right, and as if they can’t be successful in and out of college. Let me tell you, I have met many individuals with intellectual developmental disabilities who have gone to four year universities and they have done so amazingly well. And so to not offer these individuals funding to do these things that are going to ultimately enrich their life, it’s not okay.
Michelle Bishop:
I will say, quick shout out to Kevin Truitt at Disability Rights Ohio, who is a litigating boss. We see you, we see the work that you’re doing, Kevin, keep it up. And also, more importantly, to this student, Hunter, who is going to do big things. He’s going to go to college, he’s going to have a career. Actually, I think I remember from this article, he’s into design. So Hunter, if you’re listening, hit up Jack. He’s in our communications department.
Stephanie Flynt:
Yes, absolutely. And I’m just really glad that this ended on a good note. I’m super excited for this student and I wish them all the best in their future endeavors. This is really exciting.
Michelle Bishop:
All right, thanks, Jack. Well let’s get into our main story for today, shall we?
Stephanie Flynt:
Let’s do it.
Jack Rosen:
We have some great guests today. Michelle, do you want to tell the folks who we have on?
Michelle Bishop:
Absolutely. So today we’re going to be talking to Susan Kahan and Ali Chiu. Susan is a member of the clinical staff at the University of Illinois at Chicago’s Institute on Disability and Human Development, where she provides individual and group therapy for children and adults on a broad range of mental health, developmental and behavioral concerns, specializing in trauma. Susan provides consultation, actually, around the country on disability rights related topics, including trauma and trauma informed care, sexual abuse and human trafficking, sexuality and healthy relationships and crisis intervention. In addition, Susan is certified in forensic interviewing with additional certification in interviewing people with disabilities and people who do not speak. Susan provides training for law enforcement, trauma centers, disability agencies, professionals, schools and families.
We’ll also be chatting with Ali. Ali Chiu has been a public service provider since 1999. Her focus has been on anti-violence, domestic violence, gender-based violence, sexual exploitation, and human trafficking specifically. She also has been an advocate on issues relating to seniors and people with disabilities. She is currently the Elder Abuse Prevention Program supervisor at the Institute on Aging in San Francisco and is a member of the AAPI Elder Abuse Steering Committee with San Francisco District Attorney Victim Services Division. Ali holds one of the community seats as a member of the Family Violence Council of San Francisco and is also a steering committee member of the National Human Trafficking and Disabilities Working Group. Ali is a woman of color, an immigrant, a single mother, a domestic violence survivor, and a person with a disability. Justice, this national human trafficking and disabilities working group, is this how we know Susan and Ali? Is that what you’re participating in?
Justice Shorter:
It is indeed. I’ve been serving on this steering committee since 2019 and I have had the distinct privilege and pleasure of meeting some fantastic advocates all across the country, who do this work alongside survivors of human trafficking with disabilities. It is an issue that does not get enough attention and that is why we’re airing this episode this month because January is human trafficking prevention month across the country. And so we want to make sure that this issue remains on your minds, in your hearts, and of course, on your lips as we continue to speak out and hopefully bring about a difference and a change in the lives of the people who are the most impacted. And that of course, are individuals with disabilities who are at risk of being trafficked or who are on the other end and who have survived a trafficking experience.
Michelle Bishop:
So January is actually National Human Trafficking Prevention Month. If you all didn’t know that because I just learned that in the making of this episode. Justice, you lead our work on anti-human trafficking. Justice, is that true? Did I just make that up? I think you lead our work on anti-human trafficking-
Justice Shorter:
You did not make that up. I have been working in this area since 2019 for NDRN. And it started off with one of our fabulous P&As asking me a question about the likelihood of individuals with disabilities being trafficked post-disaster, given all of the continuous and maybe heightened risk factors that people with disabilities have to face, like the loss of support systems, being displaced, all of these different unique risk factors that are often heightened and they’re exacerbated during disasters. And so they had questions about it, wanted to talk about it. There was a whole event that was held by their Department of Health and other agencies and organizations and I said, “This is something that we need to be focused on, at least as it relates to the portfolio that I had been tasked with at NDRN.” And so that is how it became a steadfast portion of the work that I do. And as a result, I started working with the National Human Trafficking and Disability Work Group, which is where I met our wonderful guests who we have on the show today.
Stephanie Flynt:
We’re excited to have you guys on the show. So I guess my first question for you is, or our first question for you is just talking about who you are and also too, just talking about how you became involved in such a specific issue, human trafficking of people with disabilities is something kind of like Michelle was saying earlier, I had no idea that January was National Human Trafficking Prevention Month. And it’s something that again, you just don’t think about on a daily basis. And I feel like it’s definitely something that we need to bring attention to.
Justice Shorter:
And so, Susan, can we start with you? A little bit more about your work and how you got started in the field of human trafficking.
Susan Kahan:
My name is Susan Kahan. I work at the University of Illinois at Chicago at the Institute on Disability and Human Development. And in that context, I work as a mental health therapist in the clinic, the Developmental Disabilities Family Clinic at the institute. My area of specialty is trauma, so I work with children through adults, all of them have a developmental disability. And most of my clients have experienced some significant trauma. Because of that work in the area of trauma, I developed a collaboration with the Chicago Children’s Advocacy Center.
The Children’s Advocacy Centers, there’s one in almost every county around the country, they coordinate the investigation of case of sexual abuse of children and life threatening physical abuse of children under the age of three. So in the context of my collaboration with them, issues related to both sexual abuse of children, but also trafficking arose. I also do a lot of consultation and training for law enforcement and with the state’s attorney’s office here in Chicago. And I will be called in occasionally to consult with them on cases that involve trafficking of individuals, both adults and children with disabilities. So it was through the mental health trauma field that I ended up in this area of work.
Justice Shorter:
Fantastic, appreciation, Susan. And Ali, over to you.
Ali Chiu:
Sure. Hi, this is Ali Chiu. I actually started it, I was a volunteer at one of the domestic violence shelters in San Francisco back in 2000. I’m not sure if people remember that big, big case happened in Berkeley. There was a group that trafficked a whole bunch of people and people die in this restaurant and that’s when I was volunteering at the shelter at that time. And so I started to do some work as a language advocate because I speak Mandarin. So different situation happen and I would accompany case manager to go to either the Immigration Center or the court or whatever to interpret.
And that’s how I got started to do really groundwork. And over the years, in between doing domestic violence as an anti domestic violence advocate, I would do take cases, mostly Mandarin speaking, sometimes Cantonese speaking or Spanish speaking and working with interpreters. So that’s how I started it. And as a person with disability, I got into a lot of different advocacy work and then bring that intersection together like, whoa, what’s going on? Why are we not talking about this? So I got involved with NHTDWG, the National Human Trafficking and Disabilities Working Group. I see when they started it and so here I am.
Michelle Bishop:
Thank you so much for that. Both of you have so much experience around these issues. We’re excited to have you on the podcast today. I was wondering, as we get into this conversation, if you can just help break down for us what makes human trafficking different from other types of labor and sex crimes?
Ali Chiu:
When I start learning about human trafficking, first thing what I learned is there’s a lot of similarity to the dynamic of the domestic violence. There’s a power and control, but with the human trafficking, it’s kind of like wider net. There’s a power and control, there’s also a lot of different complicated stuff. And what I learned first is that to stop human trafficking, and I hope and I’m not jumping ahead too much, is really hard because there’s a lot of money and stuff going on. And I think that that’s one of the biggest obstacle we have is there’s a lot of international stuff. There’s a lot of, within US, things happening. Going a little deeper is when we look at human trafficking in the area with people with disabilities, it’s extra hard because there’s different dynamic we’re looking at that people are being taken advantage because of their disability. And I’ll stop right there, maybe Susan-
Susan Kahan:
Yeah, this is Susan. I think all of the elements of the dynamics of trafficking that Ali talked about are really important. Some of the other ones that I think about are when we’re talking about what is the difference? Are there differences between sexual abuse and sex trafficking, for example? As a mental health person, I’m always interested in the psychological dynamics of things like trafficking or sexual abuse, and how do we help survivors break away from the dynamics that were created in the contact of abuse or trafficking? One of the hard parts about trafficking, and it can happen in sexual abuse as well, but it can be very pervasive and kind of a stranglehold for survivors, something we talk about as trauma bonds. Many survivors of trafficking don’t even realize necessarily that they’re being trafficked.
That what’s happening to them is not okay, that they deserve better, they deserve more, and that the trafficker does not necessarily have their best interest at heart. One of the things that can draw people into trafficking is a need to feel needed. A need to feel like you belong to a group or that you are loved in a relationship. And particularly in sex trafficking, we see a bond that can develop between the person being trafficked and the trafficker where the trafficker is able to man manipulate the thinking of the person being trafficked to convince them that I’m your boyfriend, I love you. And if you love me, you’ll help, you’ll help out by bringing money into this relationship. Or if it’s a group of women, this is our family. You owe the family, the family provides you love and protection and belonging, and in exchange you help support the family just like other members of the family help support them.
And the result of that is that it can be, at times, very difficult to get somebody out of a trafficking situation. A number of the organizations I work with, particularly those that are involved with youth who have been trafficked, the biggest problem they have is the youth returning to the trafficking situation. They’ll bring them in for survivor services, sometimes even residential services, but the youth will take opportunities to leave and go back to a group where they felt like they belonged. Even if the way that they were treated or the way that they were made to feel like they belong from an outside perspective looks intolerable. But to them, to the person being trafficked, sometimes it feels more tolerable than the situation that they came out of.
Ali Chiu:
I would like to add onto that too, that on top of that, there’s a lot of threat. They can’t leave because they are threats back in their country or wherever they are and they can’t leave because of that. I think it’s so important to understand that extra dynamic there, that there’s a lot of threats. Some of the cases I’ve work on, we interviewed them and they would have a uniform stories, one story. And they wouldn’t tell us what’s going on for real. They would tell us something that’s complete… We would just hear. And that the trust, to build that trust is really, really difficult. And I have to say that especially when you speak their language, they don’t trust you because those people might be the same people that trafficked you, so they don’t want to trust you. And sometimes I going in, they go, “I don’t want to talk to you, I don’t want to tell you.” So I just want to add that dynamic in.
Stephanie Flynt:
Yeah, and I think that that’s super important to think about. Hearing both of you talk about this and the dynamics there, it almost sounds like there’s a mix. A mix of people who understand what’s going on and are afraid to leave and don’t know how to get out. And then people who have no idea that they’re being trafficked because of the things that the traffickers are saying and they think that it’s normal. And to me, that is just so heartbreaking. And so I guess that leads me into the next question of just talking about some of the key considerations. What are some of the key considerations that advocates should be thinking about when it comes to these efforts of preventing trafficking of people with disabilities?
Susan Kahan:
This is Susan. I think one of the most important keys to prevention for trafficking of people with disabilities is raising awareness that it happens. I think when I’m interacting with disability organizations and talking about trafficking, very often the response that I get is that, “Oh my gosh, I never thought of that. I never considered that as something that could be going on for some of the people we work with.” And so the foundation to prevention of trafficking of individuals with disabilities is recognizing that it is an issue, that it is something we always need to be considering when working with people and recognizing signs that somebody might be experiencing abuse of any kind, whether it’s labor or sexual abuse or physical abuse, that one possibility is a traveling scenario and keeping that in [inaudible 00:24:48].
Ali Chiu:
I think that one thing, as Susan say, is doing those outreach and doing those education. I think that one point I wanted to say, and this is we’re doing a podcast, to really let folks know that, hey, when someone take advantage of a person with disability, their benefit and make them work, make them do things, that’s human trafficking. We have to educate and support service providers in understanding that fact. A lot of disabilities organization, a lot of organization in fact, don’t know that, hey, wait a minute, this is human trafficking.
Someone who make friend, befriend. I have a case where a woman, she’s an older woman and her daughter actually took her SSI check and make her mother do this and that. And her mother was on the street, I found her on the street. We work with her and her mother had, she passed away a year ago, had intellectual disability. And we work with, “Oh yeah, my daughter…” So that’s not okay. Her mother would do different thing to survive and her daughter held that SSI check, held her food stamp card. So just really doing that outreach, doing that education to prevent that happening.
Justice Shorter:
I want to pick up on a couple of threads that have been mentioned here. Ali, you mentioned how this is such a relevant topic and issue as it relates to individuals who come to this country to work when we’re thinking about labor trafficking. And Susan, you mentioned the sexual abuse and exploitation that tends to happen and the thread that runs. And Ali, you’ve also mentioned that the sexual abuse, the sex trafficking piece as well, the thread that runs between all of them, and we talked about this a little bit at the top of the podcast, we’re thinking about this in terms of exploitation that’s happening, coercion that’s happening, as well as money that’s taking place as well, whether it’s being the withholding of funds and financial resources that people need to survive, unless they commit to various sexual acts or certain labor that people are requiring of them in order to receive the financial resources or supports that they’re very well entitled to or receiving mother sources. So that is a piece of it.
And then there’s also these other complicated dynamics related to family or familial connections and friendships or relationships with other partners. And I also want to throw in their prospective caregivers, and you guys mentioned this as well, but I just want to highlight that as a particular issue of concern, especially as it relates to individuals with disabilities or older adults, people with mental health considerations as well. If you have someone who is withholding care or withholding access to prescriptions or medications or access to treatment, unless one commits a sexual favor, unless someone is able to commit their labor in some way, shape or form, then that also brings us into this conversation around trafficking. Some people look at this with a very detached and dissociative type of lens whereby we only think about trafficking in terms of something that happens in different countries. Or if there is no real movement happening, if someone didn’t take you over state lines or over the border, then it’s not classified as trafficking.
And you two have certainly alleviated those illusions in saying that that is not true, but it can happen in a number of different contexts and situations, circumstances that people may find themselves in. So we appreciate you doing that. And there’s a question here that I would love to ask. And Michelle, I know you have a similar thought, so I’ll let you come in here and dovetail me. But I work on disaster and crises of all sort, and I’m always concerned about return and recovery and what that looks like in a disaster context. But I’m also very keenly interested in what that looks like in terms of survivors being able to return to their community if they have been taken someplace else or if they’re just in a survivor program to support them in their recovery, what that looks like for them. Often we think about this in terms of the response, let’s get people out. But what does that look like in terms of their long-term recovery and their return to their community or to some semblance of wellbeing. Michelle, I don’t know if you wanted to tack anything onto that question as well.
Michelle Bishop:
Honestly, Justice, I was going to tell you to take that one from me, so that was perfect.
Justice Shorter:
So in that case, I’ll shoot it over to Susan. Would you like to kick us off? What does return and recovery, what does that look like after someone has been taken out of a trafficking situation? What does the process of recovery, healing, what does all of that look like?
Susan Kahan:
This is Susan. I think one of the most important things to recognize is that the primary group that I work with are individuals with developmental disabilities. And there are a lot of myths and misperceptions about the ability of people with developmental disabilities and intellectual disabilities to benefit from therapy and to benefit from the kind of interventions that we provide. Or even that somebody with an intellectual disability might experience trauma in the same way the rest of us do. There’s kind of a sense like, oh, they don’t even know what happened. They’re fine, they’ll be fine. Not in my experience. People know when their body’s been hurt, people know when somebody else has controlled them. They may not be able to voice it in a way that we can hear or we can understand, but people will communicate distress and they will communicate their trauma in ways that we have to learn to understand and not to dismiss.
I’m a mental health professional, so of course for me, a big piece of the process of, I’m going to just refer to it as recovery right now for lack of a better term, is the idea that we have to provide appropriate and sufficient mental health support, trauma support. We have to provide accessible survivor services, whether it’s physically accessible or accessible in terms of how somebody communicates. We have to trust that people are benefiting from the support that we give it them if we give it in a way that is accessible to them. So for me, what is the part of the process for having somebody resume a life outside of trafficking? A big part of it is the support that the rest of us, that we as a society, are able to provide individuals with disabilities, whether they’re developmental disabilities or other disabilities, in a way that is accessible to them. That’s an essential piece of that process of coming out of a trafficking situation.
Justice Shorter:
And Ali, your thoughts?
Ali Chiu:
Sure. I think that Susan say a lot of stuff that I wanted to say too, is that support extending to mental health and service providers. I think that one key thing is really understand how they were put into that place. Not to blame the victim of course, but there may be reasons that poverty and different situation led to that, that they’ve been trafficked. And understanding that and to really create that network, build trust, rebuild that trust with them. Maybe there was somebody we could connect them with. Maybe there’s something that we could support them with.
If there’s a immigration issue, if there’s a benefit issue. If there’s any issues that we could think of, reconnect and empower them to let them know that you know what? We can do this together, you can do this together. And that’s one way to support them in that way. Support is so important, network is so important. I don’t think anybody could survive by themselves. So recovery, like Susan say, we don’t have a better word for that yet. But in that process, it’s really having that support, having that network to help rebuild that environment for them.
Susan Kahan:
This is Susan. I think the other piece that we might think about, particularly in light of what Ali said, is thinking about how are we creating environments that people return to? Are they trauma informed? And so getting at a trauma informed environment embodies some of the elements that Ali was talking about. Safety, people need to be in an environment where they feel both physically and emotionally safe, control, people need to feel empowered. They need to feel like they have control over their own lives, over decisions, that they are not being controlled, but that they act in their lives. Life doesn’t act on them.
And so the third element that we need to make sure is present in the environments that we’re creating is that people feel connected, connected in a healthy way. Because often, they’re coming out of a situation where they may have felt connected, but the connections were distorted, and the connections were based on unhealthy dynamics. We need to provide that sense that there can be a different kind of relationship with other people that involves trust and involves safety. So when we’re creating environments that involve safety, control and connection, we are creating healing environments, environments where people will hopefully be able to benefit from the kinds of services that we can provide when we provide them in an accessible way.
Stephanie Flynt:
One of the things that I would be curious to know, just based on our conversation so far, is just talking about what inclusive resources exist in order to help people with disabilities who have been trafficked. Again, we’ve talked a whole lot about preventing trafficking and a whole lot about trafficking in general as it pertains to people with disabilities. And so just wondering what resources are out there.
Ali Chiu:
This is Ali. I like to take this real quick. I wanted to maybe redirect a little bit. I am particularly not excited to hear the word help people with disability. I think that what I like to see is really empower folks with disabilities. And biggest resource out there is really having and seeing people with disability as leaders in this field. We have to do that. We have to get people with disability involved with decision-making and involved with those resources. There are a lot of independent resource center around the country. There are a lot of advocacy groups in the country. Those are groups that we need to be speaking with when we do this type of work and really connect. And that’s why I really am excited to work with National Human Trafficking and Disabilities Working Group, is we connect different people in different field together to work together. So that would be my quick and so for that.
Stephanie Flynt:
Yeah, absolutely. And I just want to say, before we get to Susan’s comments, that I really do appreciate you clarifying what terminology here is most appropriate for this situation. So thank you so much for that. One of the things that we really do aim to do on this podcast is educate ourselves, but of course, also educate our listeners. So thank you so much for that.
Susan Kahan:
This is Susan. Piggybacking a little bit on what Ali said, I think that one of the issues that has come up in the context of the work that we do with the National Human Trafficking and Disabilities Work Group is a lack of accessible services and the fact that a lot of survivor services, as they exist currently, are not accessible, whether it’s for people with mobility issues, people with sensory disabilities, or people with intellectual or developmental disabilities. And that’s a big part of the work that we do, is trying to provide training, education, and support for organizations who are trying to become more accessible. But a big, big piece of that change is raising the voices of survivors, raising the voices of people with disabilities who are leaders in this field, recognizing intersections with other groups, Justice, there’s so much really great work and intersection of racial justice and disability justice and recognizing how that comes together when we’re trying to create accessible services or support agencies as they become more accessible.
Stephanie Flynt:
Yeah, absolutely, so, so important. And I love that you talked about the raising the voices concept, people with disabilities, raising their voices and allies helping to raise their voices. And honestly, I think that that is a perfect segue into Justice’s next thought or question.
Justice Shorter:
My question is simply this, what messages of hope and solidarity do you two have to survivors of human trafficking, who have disabilities? Any messages, any final thoughts or final comments of hope and solidarity speaking directly to them. And Ali, can we start with you?
Ali Chiu:
Sure, yeah. If you are listening to this podcast, I want you to know that you are not alone and you have friends, you have friends out there. Communicate with others, talk to others, and you will be safe. I know it could be a long journey, but when we work together, we’ll get there. That’s a simple thing to say and I am somebody who have done this work for a little bit, I’m still learning. And when we do work on the ground, face to face with folks, you see people’s faces, you sense their energy and people crave for connection. And that’s the thing that we take that and say, okay, we can take that connection and build trust on that.
That’s really, really important to build that trust. And once you build that trust, we could empower folks to come out. Sometimes it take a while, like Susan say, people do return. Statistically for domestic violence survivors. It takes them more than seven time to leave that relationship. And with the complication factor in dynamic of human trafficking, it’s going to take longer sometimes. And I don’t want to say that’s okay, but I want to say that we have to meet people where they are. So it’s a long process, but we have to be patient, we have to have that respect, we have to have that sense that, okay, we’re going to build that trust. And hopefully, sooner rather later, you will trust me and we can do this together. We can get everyone to safety.
Justice Shorter:
Gorgeous thoughts there, Ali, appreciation. Susan, you?
Susan Kahan:
The message that I’d like to share is if people are listening, who are in situations where they feel unsafe or where they’re being treated or exploited for their body, for their money, for their labor, I think what I’d like them to know is that they deserve better, they deserve more. That they have value and their value extends beyond what they can provide for someone else. They have value as a human and we see you and we’re here to support you. We’re here to extend a hand, as Ali said, there are friends out there for you. There are groups who will support you, who can provide a trusting, safe environment to help you achieve the life that you want to see for yourself. I think that that’s the message that I would most like to share.
Justice Shorter:
Michelle, any final words from you or any last thoughts here?
Michelle Bishop:
I just want to say thank you both so much. This is such a critical issue. I think that it’s largely misunderstood. I know that this episode is going to be really impactful for our network, but I also appreciate that both of you are really busy professionals who do this work on top of the regular work that you have every day. So thank you so much just for making the time to join us today. We really appreciate it.
Ali Chiu:
Thank you.
Susan Kahan:
Thank you so much for having us.
Michelle Bishop:
So for today’s spotlight story, I’m going to start off by asking our co-host, Stephanie, to please restrain herself because I know how worked up she gets about these issues. Stephanie, are you ready? Have you done some deep breathing exercises?
Stephanie Flynt:
I have been working on my meditation. I’m on step three of 10 with my meditation guide.
Michelle Bishop:
Not exactly 10, but maybe ready for the spotlight story today.
Stephanie Flynt:
I guess I’m ready for the spotlight story. And we have a very special guest today that we are super excited about.
Michelle Bishop:
A personal favorite of all the hosts of the podcast.
Ian Watlington:
Well thanks, guys.
Michelle Bishop:
If you don’t know that voice, that is Ian Watlington. He is a former staff member at NDRN who has moved on to bigger and better things. But is a advocate for disability rights and accessibility around the DC area, where we’re broadcasting from, who came to talk to us today about his experiences with taxi cabs and their failure to be accessible for people with disabilities. Ian, thank you so much for jumping on.
Ian Watlington:
It’s really good to be here and good to hear your voices again. And yeah, taxis and me are like oil and water, so that’s partly why I’m here to talk about it.
Michelle Bishop:
And unlike Stephanie, you don’t have a service dog. We did a spotlight story on a previous episode where Stephanie gets denied rides, not that this is okay, frequently because she has a service dog and they won’t put a dog in the car, what’s going-
Stephanie Flynt:
Because of my blindness, but that’s neither here nor there.
Michelle Bishop:
I told y’all she was going to get worked up. I warned you. So what’s going on with cabs? Talk to us about cabs in DC.
Ian Watlington:
Cabs in DC, I think there’s an epidemic going on. It’s called I don’t want to get out of my car syndrome. And it’s basically I feel like when I ask for a cab or am in a position to get a cab, they somehow remember some ancient program that existed some time ago. And please people, it still may exist in very limited form, but they always say, “Well, you need to get an accessible cab.” And I use a wheelchair and usually if I want to be spontaneous, which is often robbed from me by cabs and other issues with transportation in the district, they just don’t seem to want to get out of their cars. I think they honestly don’t know about disability and have some ignorance about that clearly. I don’t mean to downplay that, but it’s almost as if, first of all, they assume all wheelchairs are power chairs and can’t fold.
That’s one major generalization. And then again, like I was saying, they seem to remember this accessibility program, which there was, and it still may exist in name only, but where certain cabs were subsidized to be, they called them wheelchair cabs, but basically accessible cabs. And those you could be in your power chair, those were really convenient. I knew about three of them on the road and then gosh darn it, that COVID hit us and knocked those drivers for a loop. And so now there aren’t any accessible… Well, there are, but very, very few. And so the likelihood of you getting an accessible cab if you reserve one or such is very limited. And it’s very frustrating because like I said in the DCS article, which I’m sure will be in the show notes, as they say on podcasts, they’re just no chance to be spontaneous. You reserve them, they don’t show up. You try to get them spontaneously, they drive right by you or don’t want to get out of the car and tell you to get this mysterious accessible cab that maybe there’s one woman in the district driving that cab.
Michelle Bishop:
First and foremost, I’m pretty sure I have this syndrome that you talked about where you don’t want to leave your car. Is this diagnosable? And do I qualify if I do drive up orders for all my groceries?
Ian Watlington:
Is it diagnosable? I think there’s still a panel looking into it. It might be in the DSM-6, I’m not sure.
Michelle Bishop:
I’ll stay posted.
Ian Watlington:
But yeah, it’s under study and I need to warn Stephanie again, trigger warning, it exists with Uber and Lyft drivers as well. The idea of putting a chair in the trunk of a car is a little too much cardio for those drivers.
Michelle Bishop:
A sad commentary on the state of Americans and on many levels. What strikes me about this story as well is the extent to which there’s really nothing spontaneous about paratransit. You’re only supposed to go to your scheduled doctor’s appointments and you’re just not supposed to leave the house otherwise or have any sort of a life.
Ian Watlington:
Exactly. That is my exact, they do not understand how humans interact in a social setting. And so there is this expectation that you can always give 48 hours notice and you know the exact address of where you’ll be at 5:05 to 6:05 PM. In all seriousness, it’s ridiculous. And I know many people who they need one of the accessible cabs. They can’t rely on ride share as reliable as ride share is, but they end up having to take public transit to go to the doctor. It turns into a seven-hour adventure and that’s just ridiculous.
And the idea that people with disability can’t get any good transportation on spur of the moment is what I think one of the things people don’t understand, they go, “Oh, that person can’t walk, or that person can’t see. And big bummer on those fronts.” But if they knew that being disabled meant that their spontaneity would be seriously impaired itself, that’s another big bummer about being disabled, is that there is this assumption that you can program your life and that you certainly don’t have anything else to do, except plan your life around the transportation.
Stephanie Flynt:
Right? Heaven forbid we be employed or want to go to brunch with our friends or what have you. There’s a lot of stereotypes around disability. I remember seeing one tweet, I guess it was like five years ago, but somebody tweeted something super ignorant about how they don’t understand why people with disabilities are out of the house after 5:00 PM and before 9:00 AM and I cannot remember… Oh, this person I guess, was upset because they were towed out of one of the parking spots reserved for wheelchair users at 7:00 or 8:00 because of course, they’re reserved for people with wheelchairs to utilize them. And this person’s argument was like, okay, well then they shouldn’t be outside of the house at 7 or 8 o’clock. And I’m like, no. And the parking authority agrees with us, so your SOL.
Michelle Bishop:
They’re not gremlins, they can go out.
Ian Watlington:
Yeah, yeah. It’s amazing. Now, a little bit before 9:00 AM, I may have trouble, but 9:00 AM on that, I’m pretty functional. The before 9:00 is my own sleep hygiene. But let’s not talk about that.
Michelle Bishop:
Same, Ian, same. This has been fascinating. We’re definitely going to put your DCS news story in the show notes as you did accurately call them. And maybe we can link to a Gremlins movie in the show notes. I feel like we worked that in. Ian, thank you so much for joining us. It was such a blast to have you back. Please keep fighting a good fight and know how much we all miss you around the office. And we might get you to come do this again and maybe be a guest host with us if you’re up for it.
Ian Watlington:
That would be fabulous. I would enjoy that very much. And I miss you all, and you all are doing good work. We all are doing good work, but I miss NDRN, but excited about my new adventures. But thank you all for the invitation and I look forward to coming back.
Michelle Bishop:
Whatever your new adventures are, Ian, I hope you don’t need a cab to get there, but thanks for joining us.
Ian Watlington:
Thank you very much.
Michelle Bishop:
Well, I just want to say thank you to all of our amazing guests who joined us for this episode. Once again, happy New Year to all of you who are listening, who stuck with us through 2022 and into the new year, and of course, to our special guest host, Justice Shorter, who I just now assume is coming back from hiatus and joining us monthly, right, Justice?
Justice Shorter:
Oh, we should never assume, we know what that means when we assume things, Michelle. But I will always have the PandA Pod near and dear to the work that I do. You all are constantly getting the word out about pertinent issues that need to remain upfront and center in the work of the P&A network. And so I applaud the efforts of you and Stephanie, the PandA Pod continues to pump out phenomenal material on a monthly basis. So kudos to the two of you.
Michelle Bishop:
Well, it didn’t sound like a hard no, so we’ll go ahead and circle back on that later, Justice.
Justice Shorter:
Keep on circling, Michelle, keep on circling. That’s good, that’s good.
Michelle Bishop:
This is probably going to be your new favorite part of every episode and I say that really facetiously. Stephanie, do you have a joke prepared this month?
Stephanie Flynt:
I always have a joke. I always have a joke. I’m sure Michelle is rolling her eyes and she’s like, oh my gosh, please no, please no. Will you ever just one day not have a joke?
Michelle Bishop:
That’s what’s happening over here. Yes, I’m glad you understand.
Stephanie Flynt:
I’m here for this. See, I’m good at reading your mind or reading your language, even though I can’t see anything on the screen because we’re not on video, anyway.
Michelle Bishop:
I want to personally apologize to you for that because it’s kind of scary in here, nobody wants to be in this mind.
Stephanie Flynt:
It’s okay. It’s like, oh look, there’s a cobweb. Just kidding, just kidding. Okay, okay, well here’s my joke and I promise it’s not too scary. It’s actually a pretty smooth joke, if I do say so myself. But what do you call a criminal who steals a bunch of fruit, or someone who steals a bunch of fruit? Let’s not assume people’s guilt. Anyone have any guesses?
Michelle Bishop:
I’m so worried about where this is going.
Stephanie Flynt:
A smoothie criminal. Get it? Smoothie like you blend up the fruit and smooth criminal was a thing in the ’80s, right? [inaudible 00:52:34].
Justice Shorter:
All right, I won’t be back here, I won’t back here.
Stephanie Flynt:
Justice is like I’m coming back.
Justice Shorter:
I’m out.
Michelle Bishop:
Are you not aware that there was a Michael Jackson song? Like it was a huge-
Stephanie Flynt:
Oh, I thought that was something from Santana.
Jack Rosen:
What?
Justice Shorter:
Okay.
Michelle Bishop:
What? I’m so upset. Oh, this is the most upset I’ve ever been on an episode.
Stephanie Flynt:
I’m so sorry.
Justice Shorter:
Jack, end the episode. Close us out, what is happening?
Jack Rosen:
All right, anyway, thank you for-
Justice Shorter:
Hiatus extended indefinitely.
Stephanie Flynt:
Follow us on Twitter, like us on Facebook–
Michelle Bishop:
No, no, I am up pulling up my music right now and I’m, after this episode, forcing Stephanie to listen to a whole lot of Michael Jackson.
Jack Rosen:
All right, and that was the last episode of the PandA Pod. It’s been a great journey, folks. For more, you can follow NDRN on Twitter, LinkedIn, Instagram, Facebook, maybe TikTok someday. And you can go to our website, www.ndrn.org.
Stephanie Flynt:
Disclaimer, producer Jack is lying. There will be lots and lots of episodes of the PandA Pod coming to your ears in the coming months.
Michelle Bishop:
Additional disclaimer, they just probably won’t have any more of these jokes.
Stephanie Flynt:
Mm-hmm, disclaimer, fake news. Jack’s like, please stop, I’m tired of editing already.
Michelle, Stephanie, and guest host LaToya Blizzard talk about what’s in the news. New NDRN Executive Director Marlene Sallo joins us to talk about her background and her vision for the network. Then Elizabeth Priaulx joins us to talk about the legacy of Lois Curtis. Should we have more sound effects? Let us know at podcast@ndrn.org
Transcript:Michelle Bishop:
Hi everyone. Welcome to a new episode of The Panda Pod. Tis December, may I say Happy Holidays if you celebrate any of the million holidays that happens sometimes between Thanksgiving and New Years, whatever that is for you. I am one of your hosts, Michelle Bishop, the Voter Access and Engagement Manager at NDRN.
Stephanie Flynt:
And I’m Stephanie Flynt, one of your hosts as well, public policy analyst here at NDRN.
Michelle Bishop:
The Amazing Justice Shorter is still on hiatus, so we actually have another guest host with us this month. LaToya, please introduce yourself to the people.
LaToya Blizzard:
Hey y’all. I am LaToya Blizzard. I am the fiscal and management training and technical assistant specialist. Say that five times fast. And just a fun fact, one of the best things that I celebrate in December is me, because it’s my birthday month. So happy birthday to me.
Michelle Bishop:
Happy birthday, LaToya.
LaToya Blizzard:
Thank you, thank you, thank you. And my daughter’s birthday and my dad’s birthday. We celebrate literally all month, but I’m right in the middle of December, so I don’t have much money by the time January hits.
Michelle Bishop:
You and everybody else. Well we do have a very special guest who’s going to be joining us later in the episode, Marlene Sallo, our new executive director at NDRN is going to be talking a little bit about her background with the network and giving us a sneak peek of her plans for the future of NDRN and the P&As. But before we get into that, he’s yelled at me before for not introducing him. Let’s introduce our producer, Jack Rosen from NDRN. And Jack, what news stories do you have for us this month?
Jack Rosen:
Hello, this is Jack Rosen. I am the producer for The Panda Pod and I’m here to share what’s in the news. First up, disability advocates have been criticizing the media coverage surrounding Pennsylvania Senate candidate John Fetterman, who is a stroke survivor. Critics within the disability community have been saying that the coverage of him has been ableist, particularly the coverage around the use of closed captions.
Michelle Bishop:
I mean, yeah, this is the definition of ableist, right? Is it just me?
Stephanie Flynt:
Yeah, no, it definitely is. It definitely seems like the focus really and truly is just on his disability rather than his platform and whatever else. When you see Fetterman in the media, that’s all you’re seeing. You’re just seeing disability, you’re just seeing his disability being questioned. And I think for us it’s just a reminder that there’s still a lot for us to do. And while we’ve come a long way in some ways in society, we haven’t a long way in others. Because for starters, they’re questioning his fitness for office, which that’s kind of disgusting, that they’re doing that based on disability solely.
Michelle Bishop:
Well, and a lot of people have a stroke and go back to work. I mean, what do people think a stroke is? It doesn’t mean that you’re not necessarily not qualified to do your job anymore, even if you maybe just communicate differently.
Stephanie Flynt:
Exactly. Exactly.
Michelle Bishop:
Actually wait, it’s a good thing LaToya’s here, because LaToya knows a lot about employment.
LaToya Blizzard:
Because I am employed. Yes. So I do know a lot about employment. But first I just have to say that in following particularly this state and the Fetterman Oz running, I think that it has become this, and I don’t like to use this word, but the spectacle. And I don’t know that people have really been taking it as seriously as they should.
Michelle Bishop:
I like how you refer to it as basically being like elections theater. And I’m going to start stealing that and using that in the future.
LaToya Blizzard:
You’re welcome.
Michelle Bishop:
Thank you. Jack, what else do we have in the news these days?
Jack Rosen:
Workers, employers struggle as long Covid sidelines thousands of Wisconsinites.
LaToya Blizzard:
Yes. I got to say that’s probably not just in Wisconsin. I think Covid has definitely worked through the workforce in that it has taken down staff, and Covid is a tough thing to bounce back from. Speaking as a person that’s had Covid twice it was not as easy as I thought it would be to just get back up and get back into my normal routine, particularly when it came back to work. So I get that long Covid is a real thing. Covid fatigue is real.
Michelle Bishop:
I think I still have some Covid fatigue. I agree. But I think also, I mean I was looking at this article as well and the Government Accountability Office is saying that somewhere from eight to 23 million Americans nationwide probably have long Covid. I mean, that’s a big dent in the workforce. And long Covid strikes me as kind of an obvious this would be covered as a disability under ADA protections. Yeah?
LaToya Blizzard:
I think that it’s something to really be considered. I mean, COVID is new for us, so we’ve never had to encounter this and what the effects of it are. So I think we’re going to be dealing with this for a long time to determine how we view it, and if we could, should, would view it as a disability.
Stephanie Flynt:
Yeah, absolutely. And I think that it’s one thing that we were talking about a little bit more in 2020 when I guess you could say that the pandemic was more of a conversation piece. Of course we still talk about it some in 2022, but we don’t talk about it as much as we did in 2020. And I think with less conversations about it, we’ve been talking about long-term Covid effects less and less and less. I can tell y’all right now I’m with LaToya and Michelle. It literally took me three weeks to not have to take a nap at least once a day after Covid. It was just a thing.
LaToya Blizzard:
So I lowkey think that I may have had long Covid before Covid was a thing because I struggled with getting to work [inaudible].
Stephanie Flynt:
Retweet.
Michelle Bishop:
Agreed. Jack, what else do we have in the news?
Jack Rosen:
So Disability Rights Michigan created a page for the public to track their litigation. You can find that at www.drmich.org/services/advocacy-litigation.
Michelle Bishop:
I love this. I wish all the P&As would do this. Shout out to Disability Rights Michigan. We’ll include the link when we push out this episode as well for you guys to check out. Because I just don’t know that our network gets enough credit for the litigation work that we do. I even talk to people I know personally outside of work who are familiar with some of our major legal victories and I don’t think they even know it was the P&A that did it. I love this idea of just putting our work out there. Shout out to Michigan for tooting their own horn on this one. I love it.
Stephanie Flynt:
Yeah, absolutely. And I love that this resource is something that hopefully other P&A agencies can kind of use as a model and hopefully create similar resources. It’s like you were saying, Michelle, I feel like the P&As don’t often get enough credit for the legal victories that the network gets. And so I think that that is super, super important, and I think that having that as a resource not only helps with credit, but also just helps the general public, whether it be folks in the P&A state or whether it just be people in general who are doing research, keep track of legal matters when it comes to the protection and advocacy agencies.
LaToya Blizzard:
Agreed, Stephanie. I think that this website that they’ve put together is definitely going to be something that can be used all over, and as we do more systemic work and even as the P&AS come together and collaborate, we already know that there’s standings that are available. There’s legislature that’s already out there and we can easily get to it without having to dig too far into a book, we could just go to the website and get the information that we need.
Michelle Bishop:
I’m here for it. Well, shall we turn our attention to Marlene and have a conversation with our new executive director? You guys ready?
Stephanie Flynt:
Let’s do it.
LaToya Blizzard:
Absolutely.
Stephanie Flynt:
Alrighty. So we actually have a very special guest with us right now on the NDRN podcast. We actually have a new executive director for those of you who may be lying underneath a rock. She joined us back in October. Marlene Sallo. Marlene is the first woman and the first Latina and first person with a disability to lead NDRN.
Prior to joining NDRN, she served as the director of preventing targeted violence at the McCain Institute for International Leadership. She previously served for almost four years as the executive director of the Massachusetts Disability Law Center. Marlene was appointed by President Obama to serve as the staff director for the US Commission on Civil Rights in 2013. She later worked for the Obama administration at the US Department of Justice Community Relations Service as chief of staff and senior council. She has a BA from Manhattanville College and a JD from Florida State University. Marlene, thank you so, so much for joining us. We are super, super happy to speak with you today. How are ya?
Marlene Sallo:
I’m doing great. Thank you for hosting me today on your podcast. I look forward to it.
Stephanie Flynt:
Awesome, awesome. So I’m going to go ahead and hand it over to Michelle for our first question.
Michelle Bishop:
So Marlene, you were actually no stranger to the network. Can you tell us a little bit about your history with the P&As?
Marlene Sallo:
Absolutely. I joined the Florida P&A back in 2007, and I served as an education attorney with the Florida P&A. Loved that job while I was there, actually set up an educational advocacy program in the Unified Family Court to advocate for youth who are going through either the child welfare and/or the juvenile justice system who also had an IEP and required special services to advocate on their behalf in the courtroom.
I ultimately relocated to South Carolina and left the P&A system, and then came back full circle and became the executive director of the Massachusetts P&A in March of 2018, where I served for almost four years there. A great job, but unfortunately I had to leave Massachusetts and return to Washington DC, and now I am here at NDRN. So I bring the experience at the staff level as well as an ED level from one of the P&As, and I bring all of that to the table now, serving as the ED for NDRN.
Stephanie Flynt:
Wow, that’s awesome. Thank you so, so much for sharing that with us. So one thing that we have been very fortunate to witness as staff is to see the enthusiasm that you have about the network and about your new role here at the network. So I would love for you to talk about that a little bit more on the podcast for our listeners. What about the network really gets you going? What sparks your passion for disability rights work?
Marlene Sallo:
My passion was originally sparked as a result of my serving as a special education teacher, which ultimately got me into the advocacy realm. Even when I went to law school, I knew that I wanted to represent the rights of youth with special education needs. So I worked very closely to represent the rights of dually involved youth going through not only the child welfare system, but the juvenile justice system. And I found my sweet spot when I joined the Florida P&A in their education advocacy department. I was able to bring that experience and my passion for representing youth as an appointed defense attorney or even as a state appointed child welfare attorney to the P&A. And there I was exposed to so many great advocates and litigation attorneys that had the same passion that I had, which was to advocate for the rights of all youth with disabilities across the US, and how could we really join forces and amplify the work that we were doing.
That is the passion that I bring to the table here at NDRN. But more so it’s the ability to see the great work that’s being done on the ground across all 57 P&As. Where I know that we’re all fighting for the same thing, is to ensure that the rights of people with disabilities are enforced, to amplify the great work that each of us is doing in our respective states, and to also make sure that we are the voice, at least from an NDRN perspective, up on the hill to ensure that the protections continue to remain in effect and that any protections that currently exist for people within our community are expanded upon. And then let’s work to ensure that other protections are put in play. So I believe that we’re all working for the same objective. We’re all working to improve outcomes, and at the same time we all bring that same passion based on our specific areas that we’re working on.
But it’s a big family in the way that I view it, and that’s what makes me the most passionate is that I come to work every day knowing that we’re all in this together and we all have the same vision and the same passion to advocate for the rights of all people with disabilities nationwide.
Michelle Bishop:
Yes. Get the people fired up for disability rights this morning. I love it. But let’s keep it real for a moment. NDRN getting a new executive director is kind of a big deal. The current, Decker, finally retiring is kind of the end of an era. I still talk to people every day who are surprised he actually finally took that leap and retired. Curt, I hope you’re on a cruise ship somewhere right now, living your best life. But does this moment feel significant to you as you step into this role?
Marlene Sallo:
It is extremely significant. And might I add that I did meet with Curt in September and Curt had just returned from a cruise. So we know he’s living his best life.
Michelle Bishop:
That’s amazing.
Marlene Sallo:
It is extremely significant because I understand the significant role that Curt played in the establishment of NDRN and all of the contributions that he’s made for the past almost 40 years, you can’t take that away from him. And so I’m honored to be able to continue the work that he’s done and to build upon it.
I don’t believe it hit me just how significant it was until recently. And then it was like, whoa, this is bigger than I allowed myself to envision it was. And I think that’s a good thing. If I had really pondered about how significant his position is, I might have been a bit more nervous than I was during the interview process, but I felt comfortable in the sense that I had been part of this network and it felt like coming home.
And so the significance is that I am following all the great work that Curt has done and I’m being given the honor to continue leading the charge as it applies to the great work that all of the advocates across the US are doing. But at the same time, I understand that being the first woman, Latina, and first person with a disability leading this organization also adds an additional layer of just knowing that I have work to do and there are people out there that are looking to see how I navigate these waters and how I best represent them. And I am honored to be able to lead NDRN, and I give my all and will continue to give my all every day to ensure that I amplify the work of all of the P&As. But at the same time, I’m advocating for the rights of all people with disabilities.
Stephanie Flynt:
That is awesome. So it’s been really, really cool to see the values that you hold for this organization and how you’ve been so far working to help inspire the staff and your collaborative approach. And that’s just been really, really cool to see. I know our listeners are probably curious about this, and I’m not totally sure how much you can share, but of course we would love to know about any big plans you may have, if you can give us a sneak peek, like a preview of any changes or new projects that you’re hoping to see through fruition, just different things that you may want to take on in the next few months.
Marlene Sallo:
Well, the thoughts continue to brew and the plans continue to slowly manifest themselves. But what I will say is that I bring a certain passion for certain issues that I would really like to continue working on. I am a big proponent of universal design. And so how do I weave that into the work that we will be doing moving forward is something that I’m currently debating. I am a big proponent of voter protection, and so I know that we’re big in doing that work. How do I keep supporting that and expanding upon it? And I am extremely concerned about the other side of Covid, if we can even say we’re on the other side, how that is affecting short-term and long-term access to healthcare. And just from a public health perspective, how do we plan accordingly so that we can respond quicker and in a more uniform fashion if sometime in the near future we have another virus or another outbreak or another activity that happens within the public health realm that affects our community in a negative manner.
And so how do we prepare for that? How do we forecast what the future may hold for us moving forward? And how do we prepare accordingly, not only at NDRN, but across the network? And so all of those things remain front and center in my mind. In the next few months, I will be weaving that into a work plan. And if you join us at the annual conference that we will be having next year, I will be unveiling my thoughts and my objectives for NDRN moving forward.
Michelle Bishop:
That’s exciting. I love the plug for the annual conference. Yes, everyone please come and join us. This has been amazing. Thank you so much for joining us on the podcast. We’re so happy to get to help introduce you to the network. Is there just anything else, any other messages that you’d like our listeners to hear today? Knowing that the folks who check out this podcast are working at the P&AS all over the country.
Marlene Sallo:
I just say thank you for all the work that you do on a daily basis to advocate for the rights of people with disabilities. I am here to support you. I’m here to amplify the work you’re doing. And just know that we all know, but we continue to let the public know that disability rights is civil rights. And as long as we work together to bring that forward, we will be able to continue doing the great work that we’re doing and amplify and build upon what we’ve done thus far. And I look forward to working side by side with you on this continuous advocacy journey.
Michelle Bishop:
Thank you so much. Thank you for joining us on The Panda Pod. We loved having you. And of course, if you ever want to come back and talk about any of these issues, you know you’re welcome anytime now.
Marlene Sallo:
Yes, thank you. I will be reaching out.
Michelle Bishop:
We love it. We’re always looking for new topics to talk about on The Panda Pod. Thanks so much.
So every month on this podcast, we have a spotlight story where we look for people with disabilities to tell their own stories about our struggles in the disability rights movement. And this month, y’all, we have a very important but a bit of a sobering spotlight story. Recently, if you haven’t heard Lois Curtis actually passed away, a really important figure in the disability rights movement. Lois, you will be missed for sure. For people who don’t know her story, we actually asked Elizabeth Priaulx from NDRN to join us this episode as our resident expert on Olmstead. Is that true, Elizabeth? Did I just make that up?
Elizabeth Priaulx:
I love being called the resident expert on Olmsted. I am our resident expert and I’ve been very lucky to know the story of Lois Curtis and Elaine Wilson.
Michelle Bishop:
Can you tell us a little bit more about Lois’s role in Olmsted and what that meant for the disability rights community?
Elizabeth Priaulx:
Sure. Absolutely. Lois Curtis and Elaine Wilson were living, they both had intellectual disabilities and mental illness diagnoses, and they were living in an institution, and they had lived there most of their lives. They became aware of a group of people in Atlanta or in Georgia where they were, who were able to get community-based services. And they checked with their medical professionals, and the medical professionals said, “You would be absolutely appropriate for community-based services.” But when they requested it of the state of Georgia, Georgia said, “If you want to keep receiving Medicaid, you have to live in an institution.” And they said, “Well, why are some people living in the community and receiving Olmstead?” And the state said, “Well, we just have a very small program.”
So Lois Curtis and Elaine Wilson were identified by the Atlanta Legal Aid Society, and they said, “I’d like to live in the community. My doctor said I’m appropriate for the community, and they’re telling me that if I want to stay on Medicaid, I have to stay in this hospital.” And Sue Jameson from Atlanta Legal Aid and her staff said, “Well, we can work to get you out.” Well, as in most states, there’s a long waiting list for community-based services in Georgia and it didn’t look good. And what Atlanta Legal Aid did was say, “You should expand your community-based program so more people could go in the community.” And the state said, “We don’t have the funding for that. It’s not how we run our program.” And they went to court. They filed a civil action, not even a class action, civil action on behalf of both Lois Curtis and Elaine Wilson. And they argued that the Americans with Disability Act says that programs and services should be run so that individuals can live in the most integrated settings appropriate to their needs. So it was a violation of the ADA to not provide more programs in the community.
So their case went all the way up to the Supreme Court and the Department of Justice filed on behalf of Lois Curtis and Elaine Wilson. And what was so wonderful about this was I think that in the beginning there were 28 states that sided with Georgia, that the Americans with Disabilities Act did not require the states to provide more services in the community or services in the most integrated setting. And because of tremendous grassroots organization, and national disability rights was part of this, almost every national disability agency that you can think of was a part of the grassroots and National Disability Rights Network signed on to an amicus that was filed by different state attorney generals, even, in support of their arguments. And as a result of this grassroots, a very large percentage of State Attorney Generals decided to come off the brief in support of Georgia.
So this showed the power of the disability community. And that’s one of the things I love when I think about Olmstead VLC. And it went all the way to the Supreme Court. And in a six to three ruling, Supreme Court said, “Yes, the state is required to provide services in the most integrated setting appropriate. However, there is a provision in the ADA that says that if a state can show it is a fundamental alteration and it disrupts the state’s ability to provide services to the whole disability community equally, then they can argue that it is not something they need to do.” And what Justice Ruth Bader Ginsburg said in her opinion was, “We understand that the state won’t be able to instantly move people out into the community. We don’t have the infrastructure for that yet. You need to develop programs and services. So we will allow states to develop a plan for how they are going to move people out at a reasonable pace and develop the community services necessary so that people could live safely in the community.”
So that is the story of Olmsted. And one of the reasons that I love to think about Lois Curtis and Elaine Wilson, they were African American women from the South who just pushed and pushed and said, “Why can they and not us?” And to me, “Why can the people live in the community and not us, why is it such a small amount?” That to me is a definition of somebody standing up for their rights and asking why is the world the way it is? It doesn’t need to be this way. So I think about her and Lois and I think about the grassroots that made this decision come about. And sometimes I would like to think about what the world would be if there hadn’t been courageous people to bring Olstead BLC. We wouldn’t have the expansion of community based services that so many of us rely on for the past 20 years.
Michelle Bishop:
That’s incredible. I mean, that’s just truly life changing for so many people with disabilities. Actually, and we talked to Lois, Jack, correct me if I’m wrong, two years ago when we did our disability rights and Black series on social media for Black History Month, we talked to Lois. I think we have a clip.
Jack Rosen:
We do. Let me play that for you.
Lois Curtis:
My name is Lois Curtis, happy Black History Month. I’m glad to be free.
LaToya Blizzard:
Shout out to Lois for being a trailblazer for people with disabilities. I think that as I was reading in this, it’s a part of history, the disability rights history, but at the same time that was not that long ago. We’re talking, what, 1999? Not that long ago that the judges decided that, oh yeah, you should have space in the community to live. And it’s beyond me to think that just, what, 20, 23 years ago that we were thinking about that. 23 years ago I was in college and I had no idea that all of this was going on around me. So shout out to Lois for advocating for herself, for sticking it through, and truly overcoming all the obstacles of being a Black woman in the South with disabilities, but still wanting a better life for herself and not just conceding to the, well, this is just the way it has to be.
Michelle Bishop:
All she put out there was, “I am glad to be free.” If she didn’t pick the single most important thing she could have said, it’s fine. I’m fine. I’m not crying, you’re crying, LaToya, whatever. I’m fine.
Speaker 8:
I feel like that honestly sums up the accomplishments, the grassroots accomplishments of Lois and Elaine perfectly. I feel like those two words, that sentence is just the perfect summary.
LaToya Blizzard:
And it’s the sentiment of so many others that were impacted by this decision.
Michelle Bishop:
Honestly, y’all, I think this is the perfect way to pay tribute to someone who was part of such an instrumental change for so many people with disabilities. And other than that, roll into the holidays and come back after the new year with a new episode of our podcast and a renewed fire to make sure everyone is free, because none of us are free until all of us are free.
LaToya Blizzard:
So thank you for having me. I really enjoyed it. Feel free to invite me back anytime.
Michelle Bishop:
LaToya, it was such a blast to have you on the show, and I’m so glad we talked about issues around work and employment, and you are my guru for all things good leadership and management. So it was so cool to have you here.
LaToya Blizzard:
You’re so sweet. I’m sending you hearts right now. You can’t see it, but I’m actively sending you hearts.
Michelle Bishop:
LaToya, I can see it with my mind’s eye. If you also don’t know LaToya’s basically my unwitting life coach at this point, if you ever go to her workshops at the annual conference, and she’ll do this great stuff about work life balance and mindfulness. And now she doesn’t know that she’s my life coach, but she is.
Stephanie Flynt:
So speaking of sweet things, can I tell a joke?
LaToya Blizzard:
Please.
Michelle Bishop:
Oh no.
Stephanie Flynt:
Aw, yay. See, LaToya likes my jokes. This is why she can come back anytime. Yes. That is a requirement if you’re going to guest host. Anyway.
Michelle Bishop:
Hit us with a joke.
Stephanie Flynt:
What do you get blind people for the holidays?
LaToya Blizzard:
What?
Stephanie Flynt:
Candy canes.
Michelle Bishop:
Oh my gosh.
Stephanie Flynt:
Sorry not sorry.
Michelle Bishop:
Do we have to put a disclaimer on that one for our listeners?
LaToya Blizzard:
Oh my gosh.
Michelle Bishop:
Given that this is an audio only broadcast, I just want to go ahead and make sure all of our listeners know that Stephanie is blind, so she has somewhat of a pass to tell that joke. All right? Don’t add us. Don’t send us angry emails.
LaToya Blizzard:
Oh gosh.
Stephanie Flynt:
Yes. I’m very blind. If you need proof, we’ll figure out how to get it to you.
Michelle Bishop:
That reminds me, I think our new email is up and running, y’all. We have an email address, podcast@ndrn.org, so if you have ideas for future episodes or you want to be featured as a guest on our podcast, feel free to email us, podcast@ndrn.org.
LaToya Blizzard:
And shout out to you, Michelle and Stephanie, for holding down the podcast. It’s been great for sure.
Stephanie Flynt:
Thank you, LaToya.
Michelle Bishop:
Now you’re going to have to come back. You’re coming back. LaToya.
LaToya Blizzard:
Listen, I’m trying to butter you up. I’m trying to get a spot here.
Michelle Bishop:
Are you trying to get a gig? Was this an audition? Consider yourself hired.
LaToya Blizzard:
Low key. I got my podcast voice on and everything, so I’m ready for it.
Stephanie Flynt:
Email us about whether you want LaToya on the podcast, also known as email us if you know that LaToya should come back. If you don’t, then don’t email us.
Michelle Bishop:
I know, we don’t accept LaToya hate in our email.
Stephanie Flynt:
Yeah, exactly. No negative emails, please, only good vibes.
Michelle Bishop:
Only good vibes in our email. And what about our socials, Jack? Hit us with the social media.
Jack Rosen:
And you can follow us on Twitter, Facebook, Instagram, and LinkedIn. You can also follow us on TikTok, but we do not post there currently. But you can follow us. To learn more about the work we do, visit www.ndrn.org.
In this edition of the Panda Pod, guest host Erin Haire joins us as we sit down with Marcia Johnson-Blanco. Then we are revisited by a friend of the pod.
Learn more about The Election Protection Hotline by calling 866-Our-Vote or visiting www.866ourvote.org.
Learn more about the ASL Voter Hotline by calling 301-818-VOTE or visiting www.nad.org/voter-information/
Transcript: Michelle Bishop:
Hi everyone. Welcome to episode two of the new, the improved, The Panda Pod, your one and only podcast for the P&A network. This is Michelle Bishop, one third of your hosting team.
Stephanie Flynt:
And I'm Stephanie Flynt, one of the two thirds of your hosting team coming from my closet.
Michelle Bishop:
I don't know if you had to tell people that, but yes. And just as shorter, unfortunately, our third host is on a little bit of a hiatus, but we have a very special guest hosting with us today. Erin, tell the people who you are.
Erin Haire:
Hi everyone. I'm Erin Haire. Happy to be the third hostess with the mostest. I am the voting rights specialist here at NDRN and happy to chat about all things voting with you guys.
Michelle Bishop:
Does it sound like the voting team at NDRN is taking over this podcast?
Erin Haire:
That's the way it should be.
Michelle Bishop:
I agree.
Stephanie Flynt:
No one voted on that.
Michelle Bishop:
Oh, sick voting burn. I respect it, Stephanie.
Stephanie Flynt:
But I burnt myself too, so it's okay.
Michelle Bishop:
Well, actually this episode is going to be all about voting because today is November 1st, which means that if you have not voted yet, you have one week left to get the job done. Midterm elections are coming up on November 8th, so we are going to be talking all things voting on this episode. We have a special guest today who's going to be talking to us all about the Election Protection Coalition and options for voters who have difficulty voting on election day. We're going to have a really cool spotlight story from a very special top secret guest who used to be a poll worker. And before we can get to all that, let's talk about P&As in the news. What are the hot topics going on lately?
Jack Rosen:
Okay. And I'll pull that up. And in the meanwhile, Michelle, do I just not get an intro anymore?
Michelle Bishop:
Do we intro? Wait, can we vote on this? Who thinks we should intro Jack, our producer?
Stephanie Flynt:
Aye...oh wow I'm all alone.
Michelle Bishop:
Did we not vote on that? This is little awkward.
Erin Haire:
I'm affirmative.
Stephanie Flynt:
Okay, good. Exercise your right to vote, ya'll. That's like the whole –
Michelle Bishop:
Jack Rosen with our communications team, our digital communications specialist, Senior Digital... Jack, what is your title? I can't introduce you.
Jack Rosen:
Senior Digital Communications Specialist.
Michelle Bishop:
I was very close. In my defense, I was very close.
Stephanie Flynt:
I was like, this is so suspenseful.
Michelle Bishop:
Wait, I'm sorry. Stephanie, do you not have major news for us right now?
Stephanie Flynt:
Yes, you could call it major news. I'm going to start over.
Michelle Bishop:
A little bill that maybe got signed into law recently. I'm just saying.
Stephanie Flynt:
Well, after working on this legislation for some time now, I'm super excited to announce that the PAVA Inclusion Act is now the law of the land. Now, for those of you who may not be familiar with the PAVA Inclusion Act, essentially what happened was the Northern Marina Islands and the Native American Consortium we're not included in the allocation of PAVA funding for the past 20 years. And so we were finally, finally, finally able to get PAVA amended so that they can be included in funding this fiscal year. So super excited about that.
Michelle Bishop:
Woo woo. Yes, PAVA Inclusion Act.
The PandA Pod is back! And we have a new co-host, a new producer, and some fantastic guests.
Get the latest disability rights updates on disasters, voting, and the census. Join as we sing goodbye, crown a new reigning queen of bad puns, and send Erika off to Sweden!
In this final podcast episode celebrating National Disability Employment Awareness Month, Aaron Kaufman shares his employment journey, including how VR played a positive role as he worked toward his employment outcome.
Liz Weintraub shares her unique employment story - her journey from a sheltered workshop to a Senior Advocacy Specialist on the Public Policy team at the Association of University Centers on Disabilities.
In this special edition of the PandA Pod, we explore what to expect during the 2020 General Election process given the current public health crisis.
The current Commissioner of the Rehabilitation Services Administration and the Assistant Secretary for the Office of Special Education and Rehabilitative Services, Mark Schultz, joins NDRN to discuss the tremendous potential of people with disabilities to successfully obtain jobs in the community.
This is the first episode of a series celebrating National Disability Employment Awareness Month, NDRN had the pleasure of speaking with U.S. Senator Bob Casey (D-PA) who explains some of the legislation Congress is considering to improve employment opportunities for people with disabilities.
In this third episode of the PandA Pod, we hear the stories of the P&As who are out on the front lines every day ensuring that the rights of people with disabilities are not dismissed when disaster strikes.
During this second episode, we cover how census data impacts emergency preparedness and disaster assistance and why households need to respond to the 2020 Census.
We're excited to introduce the first-ever episode of the PandA Pod, a brand new podcast!
The National Disability Rights Network (NDRN) is excited to introduce the first-ever episode of the PandA Pod, a brand new podcast. The podcast name, PandA Pod, was inspired by the Protection and Advocacy (P&A) System - P&A...or P and A…as panda, get it? Just like NDRN, the PandA Pod content is all about P&As and provides useful and entertaining training and technical assistance to P&As and our allies in an all-new format. Keep coming back to the PandA Pod for a range of disability rights related topics from some of your favorite NDRN staff and our special guests all year long.
PandA Pod kicks off with a three-part series called Disaster, Disability & Democracy! This series focuses on voting rights and census participation of people with disabilities, and how these areas of democracy relate to disasters and emergencies.
During the inaugural episode, entitled Power at the Polls: Voting Rights When Disasters Strikes, NDRN chats with Mary Ciccone of Disability Rights New Jersey who explains the state's efforts to get ballots to all voters immediately following Super Storm Sandy, with some important lessons learned. Following Mary's interview, we check in with Neal Kelley of Orange County Elections in California about elections under the threat of wildfires, and some best practices for advance preparation. Transcript Michelle Bishop:
All right y'all, are we ready?
Erika Hudson:
Yes.
Justine “Justice” Shorter:
I think we are.
Michelle Bishop:
Here we go. Let's do it.
Justine “Justice” Shorter:
Hey....
Michelle Bishop:
Welcome fearless listeners. Today is the first-ever broadcast from PandA Pod.
Justine “Justice” Shorter:
Hey now!
Michelle Bishop:
If you haven't heard, PandA Pod is NDRN's brand new podcast channel designed to deliver training, technical assistance, useful and most importantly entertaining content the P and A's and our allies in an all-new format. Keep coming back to PandA Pod for podcast series on any range of disability rights topics from some of your favorite NDRN staff.
Justine “Justice” Shorter:
That would be us.
Michelle Bishop:
And our special guest all year long.
Erika Hudson:
If you've tuned in today you're just in time for our first episode series of Disability, Disaster & Democracy. Where we're going to be talking about elections and census data and how it all relates to emergency preparedness and disaster planning. But without further ado, let's introduce our host for the PandA Pod, Justice.
Justine “Justice” Shorter:
Hi everyone. It is I, Justine "Justice" Shorter. I am the Disaster Protection Advisor here at NDRN and I am absolutely thrilled to be joined here today by my two spectacular co-hosts.
Justine “Justice” Shorter:
But let me... And we'll go into a little bit more, more about the series, but before we do, let's go ahead and kick it over to Michelle.
Michelle Bishop:
Hey, this is Michelle Bishop, you may know me as your Voting Rights Specialist here at NDRN and I can't pass up this opportunity to also give a shout out to PAVA #IRL, my video blog, check it out.
Michelle Bishop:
And now let me introduce Erika, Queen of the Pun.
Erika Hudson:
That's an honor and a privilege to have that name, but my name is Erika Hudson. I'm a Public Policy Analyst here at NDRN and my main focus is Census 2020 that is quickly approaching and I also have the opportunity to work with the rest of our public policy team here at NDRN on various sorts of topics. But so excited to be with you all today and excited for this first series to get started.
Justine “Justice” Shorter:
Yes, it's going to be a really phenomenal one. Talking about disasters, emergencies, humanitarian crises. It's going to be great.
Erika Hudson:
Yes, I'm excited.
Justine “Justice” Shorter:
These are difficult topics, but they are worth us having the conversation about it. People are approaching these topics from such unique and i...