National Disability Radio

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.

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.

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.  

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.

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.

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.

On this episode celebrating National Disability Employment Month we have a double header! First up we interview the team managing the Financial Access, Inclusion & Resources (FAIR) Program at Disability Rights Louisiana. Members of the team include Carolyn LeBrane Tilton, MPH, MDiv, who serves as Program Manager, and Case Managers Alexander Andréson and Lauren Sanchez. They together to support returning citizens efforts to become financially stable. Then for our spotlight story we’re joined by Dr. Josie Badger, of J. Badger Consulting and Peacock Consulting, to discuss the barriers to employment for people with disabilities and how the government could do more to remove those barriers.   Learn more about the FAIR Program at https://disabilityrightsla.org/resources/financial-access-inclusion-resources-program-one-page-flyer/ Connect with Dr. Badger at https://jbadgerconsulting.org/ Watch our documentary Accessing Democracy (also available in ASL) at https://youtube.com/playlist?list=PLwF-vB8hlrRAzpd8D1_6rq8L5BgXzWqO3&si=zMyBeNJ1XvqhSY8o Full transcript of this episode available at https://www.ndrn.org/resource/ndr-oct24/   TRANSCRIPT Stephanie Flynt McEben: Just stuff some nacho fries down my face. Michelle Bishop: So you just shaved what down your face? Stephanie Flynt McEben: Nacho fries. I was hungry. Michelle Bishop: Nacho fries. Stephanie Flynt McEben: The Taco Bell things except I don’t like the cheese sauce. I just like the fries and the weird seasoning on it. Michelle Bishop: That sounds like seasoned fries more than nacho fries. Jack Rosen: Yeah, I don’t know. If you say nacho fries I feel like it would have a meat to it. Stephanie Flynt McEben: No, it’s like Taco Bell cheese sauce, like ballpark Taco Bell cheese sauce, and then the french fries that have the interesting seasoning on them. Michelle Bishop: I’m saying Taco Bell come for us, but that’s not nacho fries. That’s just cheese fries. Jack Rosen: Michelle, don’t screw this up. We’re trying to get a sponsorship Michelle Bishop: From Taco Bell? Jack Rosen: Yes. Michelle Bishop: They have a specific interest in disability rights. Stephanie Flynt McEben: Yes, although- Jack Rosen: Well, I can think of one person with a disability who is planning to go to the Taco Bell Cantina later. Michelle Bishop: It’s you, isn’t it? Jack Rosen: It is me. I was going to get a quesadilla. And if they give us a sponsorship, I’ll say is a fantastic margarita slushy thing. Michelle Bishop: That does sound good actually. I take it back Taco Bell. Call those fries whatever you want. Back to National Disability Radio. I am Michelle Bishop, one of your fabulous hosts, Stephanie Flynt McEben: And I’m Stephanie Flynt McEben in one of your other fabulous… Oh my gosh, that was bad grammar, hosts in this. Michelle Bishop: I’m the least prepared podcast ever. We can’t say our own names now without messing up. And also, I guess, okay, look, so it’s just the two of us right now. So I’m thinking temporarily, temporarily Stephanie, temporarily. What if we called our producer Jack a temporary co-host? Stephanie Flynt McEben: A host do sir. A pro host. Michelle Bishop: Is Jackie going to talk? Jack, you’re supposed to introduce yourself at that point. Jack Rosen: I was kind of letting Stephanie riff it out there. That’s one of my skills as a producer and host is knowing when to “yes and.” Michelle Bishop: Jack can’t be a host because it’s like we passed it to him and he didn’t say anything. Stephanie Flynt McEben: I know. That makes me so sad. You were going to be the best pro host. Michelle Bishop: It was so short-lived. Jack Rosen: All right. Hi everyone. It pro host Jack Rosen here. So Michelle, we have a fantastic episode today. We’re doing a bit of a throwback in that we also did a spotlight story. So do you want to tell the people about who we have on? Michelle Bishop: First of all, look at us sticking to our original format that we don’t stick to having a spotlight story. We’re crushing it this month because this month is, wait, this is the best because this month is the National Disability Employment Awareness Month. And we are technically right now three employed people with disabilities. So brushing it. Stephanie Flynt McEben: Yes. Michelle Bishop: Yes. Employment for people with Disabilities. This month we have some special guests here for you to talk all about disability employment awareness month and the work that they are doing to get and keep people with disabilities employed. Jack Rosen: Thanks Michelle. And on today’s episode we have Lauren Sanchez, Alex Andréson and Carolyn LeBrane Tilton from Disability Rights Louisiana. They run the FAIR program at the Louisiana P&A, which stands for Financial Access Inclusion and Resources Project. They help returning citizens navigate employment and resource barriers to achieving long-term financial stability. But that’s not all. We also have on Josie Badger for our spotlight story. Josie is a consultant who focuses on employment for people with disabilities. So let’s kick things off with our interview. Michelle Bishop: Yes, pro host. So the FAIR program is a program of Disability Rights Louisiana, which provides free financial coaching and case management services to formerly incarcerated individuals with disabilities helping them to achieve their employment, financial, and reentry goals. Let’s get into it. If everyone from Louisiana who joined us today, if you don’t mind introducing yourselves for our listeners. And then Carolyn, can you tell us how the FAIR program started? Carolyn LeBrane Tilton: Yes, thank you. First of all, I just want to say we are very excited about being given this opportunity to be on this show and to share with everyone what the FAIR program is all about. My name is Carolyn LeBrane Tilton. I am the program manager and I am here with two of the best bestest people in the world who love working for formerly incarcerated individuals and helping them to become all that they can be. I’m with Alexander Andréson, who is a case manager and financial coach and I’m with Lauren Sanchez, who is also a case manager and financial coach. Alexander Andréson: So I’m Alexander Andréson like Ms. Carolyn just said. I’ve been in the nonprofit and advocacy realm for the last eight years and my last year and a half has been with Disability Rights Louisiana’s FAIR program. I’m the only member of my immediate family who’s not been directly involved with the criminal justice system. And in my early childhood, I watched my grandfather reenter with disabilities after decades behind bars, witnessing his struggle with reentry firsthand fuels my passion for our target population. I wish he would’ve had access to a program like this. Lauren Sanchez: And I am Lauren Sanchez, also a case manager. I’ve been in and out of the criminal justice system for a little over a decade and dealt with my own disabilities for longer than that. So my journey led me here and this position spoke to me in just wanting to give back and let people know that life can get better. Carolyn LeBrane Tilton: Now the question that was asked is how did we get started, right? Michelle Bishop: Absolutely. Tell us all about it. Carolyn LeBrane Tilton: Well, Louisiana has long been known as the incarceration capital of the world, and of course that’s a title that really needs to change. For years we’ve been representing people with disabilities. When I say we, I mean Disability Rights Louisiana. We’ve been representing people who were being abused and neglected inside of our prisons. And so in 2017, our governor signed a package of bills into law that was aimed at significantly reducing the state’s prison population. Now this may sound like great news and it was, but people were coming out of prison and when I say we, I mean Disability Rights Louisiana couldn’t find any disability focused reentry program that we could refer our clients to once they were released. Carolyn LeBrane Tilton: We knew that clients with disabilities would need very holistic services to help them rebuild their lives. And so we decided to build our own. So in 2018 when we started building the FAIR program a foundation, the Kessler Foundation actually presented us with a funding opportunity and we saw that as a chance to create the program and bring it to our community. Their support was instrumental. And so that’s how we started. We started as a pilot program in 2018 and we’re now five years old. Stephanie Flynt McEben: Yeah no, thank you so much for that information. I know that you briefly touched a little bit on this, but could you speak a little bit more to why FAIR’s strategic focus has been specifically on employment? Carolyn LeBrane Tilton: Yes. And this is really a very unique approach, but when we looked at the data, and we did a lot of research on this, we saw that unemployment and poverty were some of the strongest predictors of incarceration and recidivism. And we also realized that those issues disproportionately impacted people with disabilities. So DRLA already had a lot of experience in helping people with disabilities address employment barriers and at the same time address their financial concerns as it related to balancing their disability benefits. Carolyn LeBrane Tilton: So it just seemed like a good place to start and to bring those two together. We also saw it as an opportunity to address the gaps in other employment programming. So what happens is that in our work we see repeatedly that there’s so many issues unrelated to the actual jobs that we’re making it hard for our clients. And I’m talking now issues like stable housing, transportation, healthcare, and of course financial matters. So we decided that what we would do is really we wanted to be a very holistic approach, and so we wanted our program to use case management strategies to support the job seekers, but also to bring in the whole financial literacy and financial coaching piece. Jack Rosen: So I’m wondering, beyond employment outcomes, why did you decide to also focus on financial stability? Carolyn LeBrane Tilton: Well, at the same time that we were looking at all of this, we saw that in our benefits counseling program, the WIPA program, we found that our clients were facing financial issues that went way beyond the disability benefits that they were receiving. And they were asking questions like, how can I get rid of some of this debt that I had? They were asking questions about savings. They were asking questions about setting up bank accounts. Carolyn LeBrane Tilton: And again, we could not find any financial coaching programs to refer them to that understood how the intricacies of these benefits go hand in hand with their disabilities. And so what we did was we went to a training program that the National Disability Institute offered, and that training made a strong case for how financial coaching could improve employment outcomes and ultimately the long-term financial pathway of our clients. So pulling all of that together, that’s what significantly influenced the development of the FAIR program. Michelle Bishop: Are we back to me? Jack Rosen: Yes. Michelle Bishop: Y’all, we’re getting through this faster than I thought we would. I was like, there’s no way we’re going to my question already. Okay. Sorry, sorry. Okay, I’m focused. Alex, so what does your day-to-day work look like in your role as a case manager and financial coach? Alexander Andréson: My day can vary greatly, but there are two typical scenarios that I deal with. When starting with a new client, I start by preparing a client file and conducting a thorough baseline assessment. Our baseline assessment covers demographics, contact details, housing, employment, education, legal history, health document access, transportation, financial literacy, income and debt and gold. This initial meeting is designed to be conversational to help with that building of trust. We also sign any necessary consent forms. Alexander Andréson: Once we understand the client’s situation and aspirations, we create an action plan together. This might involve connecting them to medical care, job training, or helping them start their SSA benefits application. More complex cases may require immediate research, advocacy or referrals like with housing or food crises. We maintain regular check-ins at least twice a month providing financial coaching to enhance their financial knowledge and capability. In general, my role as a fair case manager and financial coach is highly individualized and we adapt to each client’s unique needs. So I’m lucky that every day looks different. Stephanie Flynt McEben: Okay. So I have a question actually for Lauren. I know Alex touched a little bit on this, but what are some challenges that your clients have faced as they’ve tried to get employment and financial security? And how have you been able to help them address such challenges? Lauren Sanchez: So as Alex said, many of our clients face many different challenges, but specifically what I have seen recently in a lot of my clients has been coming to us while they’re in drug court. Yes, drug court has its benefits of course, but it can also be very difficult and a huge stressor and have barriers especially for clients with disabilities. Some examples of what the clients face is regular reporting court groups, and this can all be within a minute’s notice that they have to attend. A lot of our clients don’t have reliable transportation. Employment. They’re required to work 20 hours a week. This could be difficult in finding second chance employment. Employers willing to accommodate their schedule, clients not being able to do just any job with their disability or able to meet the hours. There’s also the drug court fees. A lot of our clients are just getting on their feet struggling to find employment and this can also be added debt. Lauren Sanchez: So what can we do about this? Some of the things that I’ve been able to do is meet with multiple drug court staff, establish a relationship and open a dialogue. It seems they’re very familiar with the re-entry process, but may not necessarily be familiar with re-entry with disabilities. I’ve been able to educate staff, advocate for the client. The client may not be able to work around a large amount of people. There may be over-stimulation, they may need frequent breaks, shorter shifts, they may need those accommodations in order to have success with a decreased income. We’ve been able to get payment plans for the fees. Lauren Sanchez: And then even things like medications. There’s been questions about if their medications are medically necessary and I’ve been able to explain what these medications are for with their disabilities and helping them have an understanding. So through our program, we’ve actually been able to assist with developing a foundation for independence and stability while helping the clients stay in compliance and maintaining their freedom. In the end, actually because of our involvement, drug court has asked us to come do a presentation and educate them further, and they’re now actually interested in referring clients and seeking our help for their success. Jack Rosen: And Lauren, I’m wondering what kind of challenges you’ve had connecting with your clients? Lauren Sanchez: The biggest thing in the beginning seems to be gaining their trust and respect. With their past history, this doesn’t always come easy. Through the re-entry process, they may face a lot of discrimination with disabilities and previous incarceration. So some of the things I’ve been able to do and found successful is first of all, consistency. I do what I say and I say what I do. I always show up, always answer. I was recently told that a client was having a problem with people sticking around and they were so grateful that I was here with that consistency. Lauren Sanchez: Using motivational interviewing, this can be like a guiding style of communication involving good listening and direction, and it’s actually based on respect to empower people. Offering a welcoming and comfortable environment. We don’t have your typical office atmosphere, which can be cold and intimidating to some people. We like to refer to our office as the cottage and it has a home-like environment, a lot more welcoming for them. Meeting people where they’re at. Successful looks different for different people, they’re in different phases. Having an individualized plan, no one-size-fits-all and no having judgment, and then sharing my own experience and being able to relate with them seems to go a long way. Jack Rosen: I think you touched on so I’d like to follow up a little. The trust piece of it, how do you kind of approach people so that a lot of people, I assume among your clients have had bad experiences with people in positions of authority. So how do you make yourself a little more… How do you take that initial step when let’s say I was a client connecting with you? Lauren Sanchez: I would think so initially, when a client comes in, if they come into the office, I’m going to welcome them. I’m going to not sit behind a desk, I’m going to sit in a chair next to them. I’m going to offer them something to drink and just start with a conversation of getting to know them, not necessarily sit there with a pad and paper asking continuous questions and I want to feel like an equal to them because I’ve been in their shoes before and being able to share that helps. Sometimes it’s not even about having them come in but going to them, meeting them in a neutral environment, a place that they feel safe and comfortable. Michelle Bishop: Thank you Lauren. I love all of that. It’s just meeting people where they’re at is so important. The whole reason our network exists is to serve the people in our community and we have to be able to meet them where they’re at and go from there. I love that. Alex, can you share a success story that speaks to the impact of the FAIR program? Alexander Andréson: Absolutely. So one of my most memorable clients is a lively elderly man who’s reentering society after 40 years at Louisiana State Penitentiary also known as Angola. He faced challenges with medical care, housing, and transportation. We started by applying for low-income senior housing, and after a few months he was approved for an apartment with a great view of New Orleans, the city he grew up in. Next, we worked with his doctor to ensure that he received his electric wheelchair by educating them on Medicaid and Medicare durable medical equipment requirements. Alexander Andréson: After a year of struggling with repeated denials, within a month he had his chair thanks to our advocacy. Through financial coaching, we planned his use of SSA back pay. He bought furniture for his new apartment and we discussed the considerations for purchasing a vehicle. After buying his car, he faced a minor accident but had insurance and a covered rental, allowing him to continue working in his caregiving role with a family member. This experience demonstrates the comprehensive support that we offer to help clients to build stable and independent lives. Stephanie Flynt McEben: Sorry, my dog nearly stepped on my laptop because that’s where life’s happening. Anyway, Lauren, Alex just shared a success story. I was wondering if you could also share a client success story as well with us. Lauren Sanchez: I would love to. So I would actually like to share about a client who came to me. She had been in and out of jail, living with some complex disabilities, and still navigating the justice system of drug court, which I previously spoke of. She was unemployed, not necessarily meeting drug court requirements of work and not being able to pay her fees, which put her freedom and her independence at risk. So she was placed in a work development program. Once she successfully completed this, she was still struggling with finding job placement. We were able to reach out to a contact and help her find a job willing to accommodate her disability and her drug court schedule. She was only able to start one to two days per week and still facing the stress and pressure of being in non-compliance. And really she was ready to give up and quit. Lauren Sanchez: But through coaching and encouragement, she was willing to stick with it. So I spoke with her drug court counselor and explained how she was making progress, but her disability was playing a factor in achieving her goal and her process may look longer for her. As a result, drug court was willing to decrease her hours required to work from 20 to 10 and set her up with a payment plan. Lauren Sanchez: Without this added stress and with our ongoing support, she started to perform better at work and she’s now working five days a week full-time. And with her increased income, she’s also starting to catch up on those fees I mentioned. In addition to that, by working with one of our other partners, I was able to find out what was needed to reinstate her driver’s license. And now with the increased money, she’s able to do that. We are also looking at setting up a savings plan to meet new goals such as a car for reliable transportation. Just these small changes to accommodate has helped her maintain her freedom and with the start of overcoming one barrier has had a domino effect and opening more opportunities for her. Jack Rosen: So I want to hop in here. You mentioned, it brings something to mind. Is debt a common issue for a lot of your clients? I imagine people have been incarcerated, they’ve had bills add up, whether that’s trying to keep their housing or just, I know simply being incarcerated can be an expensive experience. Lauren Sanchez: Absolutely. It’s not uncommon. Unfortunately, prior to incarceration, people don’t always make the best choices or have the best judgment and maybe doing whatever they need to do just to get by and that might put them in some poor financial situations causing a load of debt that they’ve acquired. In addition to coming out and having to pay those fines and fees to the court system as well as a lot of times when you’re incarcerated, some of that debt continues to accrue while you’re still in there. So it could be very overwhelming for people who just need to get a job just to get the basics, food, shelter, clothing but then also having that debt in the back of their mind, I need to resolve this in order to acquire some of these long-term larger goals of housing, cars, things like that. So yes, debt is quite common, but with our financial coaching, it’s not impossible to overcome. Jack Rosen: So it sounds like that’s some of the goals of the program to have people find employment to help them get out of those debts or at least make those debts manageable. How would you all say that you measure success? Carolyn LeBrane Tilton: That’s a great question Jack. You’ve heard a lot of the kinds of things that we do, and of course you’ve heard how our clients experience so many barriers, so many barriers when they get out and come back into the community. So when we look at the word success, success for us isn’t just somebody finding a job or securing housing. Those things are very important of course. But what we do, we wear two hats really. So you heard me say that we’re case managers and we’re financial coaches. So as case managers, that’s what we’re doing. We’re doing information and referral. We’re making sure that if you’re a senior, you get on the list for senior housing. So we’re doing those kinds of things. But we are really focused on stability, long-term progress and of course independence. And so when we look at success, we do look at several key indicators. Carolyn LeBrane Tilton: So number one, we do track the employment outcomes. How many of our clients are able to find jobs and not just any job but jobs that are willing to work with them along with their disabilities. We look at the housing piece, we want them to live in a place that is stable. Many of our clients come to us, they’re homeless. And of course, there’s an affordable housing crisis all over the country and it’s dire here in New Orleans. Even the shelter, the low-barrier shelters, sometimes very difficult to get our clients a bed in that shelter because they only have so many beds and there’s so many people in need. So when we’re looking at measuring success, we use the change machine Salesforce platform. And so in that platform, we’re able to not only measure things like their financial health and what this means is what Lauren was talking about, how much debt do you have? Carolyn LeBrane Tilton: How can we help you reduce that debt? And then we follow that all the way through to see really sometimes month to month how that debt is being reduced. We also through the change machine platform, and when we are putting on our coaching hat, that’s when we’re talking to our clients about spending plans. We don’t really use the word budget, but we begin to have conversations with them very early on how important it is to know where your dollars are going. And that’s why Lauren talked a lot about trust. We have to gain the client’s trust because we’re going to be asking them some very intimate questions. And those are the kinds of questions that if they were just going to an agency talking to a case manager who’s focused on housing, mental health, things like that, they’re not going to go into the depth that we do. Carolyn LeBrane Tilton: And so the primary objective for FAIR is to enhance the employment and financial outcomes about clients. And let me just boast just a little bit. 49% of our clients achieved employment. Our clients reduced debt by a collected total of $79,993. Our clients increased their income by a collected total of $74,253 per month. Carolyn LeBrane Tilton: So what we’re doing when we’re coaching our clients, and like I said, we do it simultaneously. When we’re coaching them, we’re helping them to see how they can contribute to the economy and we empower them to not only establish financial security but desire it. And that’s a long way from being homeless to now having hopes and dreams of buying a car, having your own apartment, and those kinds of things are the kinds of conversations, meetings, if you will, that we have with our clients and they begin to open up. And when they share those hopes and dreams, there’s a dollar sign. There’s money attached to hopes and dreams, especially as it relates to cars and an apartment. And so we work very closely with them, we work together, we’re a team. And so our success is based on our support and empowerment of the whole client. Stephanie Flynt McEben: Yeah no, thank you so, so much Carolyn. And you totally deserve to humble brag here, totally. This is some absolutely fabulous work and just hearing you guys talk about the experiences that you’ve had with your clients. But on the topic of measuring success, I would love if you could speak a little bit to what has led to the success of the FAIR program? Okay. Carolyn LeBrane Tilton: Well, let’s see. FAIR success is really attributed to how we support our clients. And I know what I’m saying sounds simplistic. And we actually had a discussion yesterday as we were preparing for this, and a lot of times the things that we do for our clients, there’s so much in our DNA until we don’t realize that it’s just something that is out of the ordinary. And we had to laugh about that yesterday because we do provide a wide array of services and we tailor those services to each individual’s unique circumstances. So when we are able to glean the kind of information that we get from the clients as we meet with them regularly, we begin to see that once we equip them with skills, resources, and opportunities that they need to succeed, they want to become more and more a part of a community. Carolyn LeBrane Tilton: And what that does is of course makes our communities safer, more inclusive and economically stronger. So I would say again, their success lies with how we support our clients and how involved we get with our clients. It’s so much so till we don’t really have something called a graduation from the, because our clients don’t want to leave us. Even though they have gone through all of the action plans that we help them to develop, if something comes up in their lives, they call us first because they know that we’re going to guide them and give them the kind of wisdom that they’re going to need to overcome whatever particular barrier they face at that time. Lauren Sanchez: I just wanted to add to that, just like Carolyn said, our clients, they are the hero in their own story. This is their journey. They choose their goals, we just help them reach them and that is their success. And with their success is our success. Michelle Bishop: I love it. I’m here for it y’all. I agree with Stephanie. I think you should brag away. You all can’t see me because this is a podcast, so you can’t tell but I am snapping right now when I tell you to brag it out. You all are doing so much work and seeing successes, not surprised, nobody wants to graduate and they don’t want to leave you all. I would imagine with all of this on your plates, it must take a lot of community partnerships to make it work. And I’m wondering what kind of partnerships you’ve developed over time that are making this achievable? Alexander Andréson: Absolutely. So really, most of our clients do come to us through referrals from community partnerships. As this program has been around for five years, we work with clients within the community, not within a vacuum. So we collaborate with individuals from other specialized support programs, and we’re building those strong relationships as we go. For every issue our clients face, we connect with experts in the relevant field allowing us to provide the holistic support while also filling those gaps in our expertise. These relationships allow us to focus on what we do best, our financial coaching and case management. Alexander Andréson: We have too many community partners to really highlight all of them here in the time that we have but I did want to share some examples of our most effective partnerships. As Lauren mentioned earlier in her success story, we have a community partner that assists with legal challenges including driver’s license reinstatement and fee reductions, which is a huge part of our work. We also collaborate with case managers from the public defender’s office, probation and parole, and other court programs to better understand our client’s legal obligations and restrictions and work with them the best we can. Additionally, we’re involved with our local reentry task force, which enables us to advocate for the broader community of formerly incarcerated people with disabilities by identifying and addressing barriers within reentry services in the city and other organizations. And it also just allows us to connect and network with groups that are doing similar work to us, making sure we’re not doing things twice. Michelle Bishop: I think it’s all you, Jack no? Jack Rosen: It is. I was just pulling it up. Michelle Bishop: Oh sorry. My bad, my bad. Do your thing. See Jack, this is why you’re a producer. Jack Rosen: Yeah, and what would you call someone who’s doing an interview? Michelle Bishop: This is a longstanding argument y’all between whether or not Jack is the producer or one of the co-hosts. It’s a long running- Stephanie Flynt McEben: Yeah, it’s a big running joke for us and we all know who the real host of the podcast is its Nala, my guide dog. Michelle Bishop: When he was- Alexander Andréson: Has to be included in the joke. Michelle Bishop: That’s funny. When he wasn’t ready with the question right away, I was like, now is my moment to slide in there and make a joke about Jack not being a host. Stephanie Flynt McEben: Yes. Michelle Bishop: But also, if Nala keeps unmuting your computer, what I’m hearing that Nala is ready to step up and start co-hosting the podcast with us. Stephanie Flynt McEben: Yeah, I’m sorry she made my screen reader talk over a little bit. I was like, “Are you serious?” She was unmuting my computer with her nose and then she went, she’s got an Aflac duck that she’s obsessed with. And so then she went and started literally slamming that against my computer. Michelle Bishop: She is trying to unmute. She is ready to be heard. Stephanie Flynt McEben: She is, she is. She wants her bark to be heard. Michelle Bishop: Sorry, sorry. We can’t control ourselves. Stephanie Flynt McEben: Sorry guys. Michelle Bishop: Do your thing, Jack. Sorry. Alex Anderson: Y’all are good. Jack Rosen: So I was wondering what’s the future hold for the FAIR program? Carolyn LeBrane Tilton: Well, Jack FAIR is constantly evolving. We’ve been talking about expanding our reach one day, going outside of the New Orleans perhaps to another city in the state. We continue to build upon the partnerships that Alex talked about, and really we are Disability Rights Louisiana, so we continue advocating for the kind of policy changes that’s going to make re-entry smoother for our clients. I’m hopeful about our future because I’ve seen firsthand the resilience and the determination that our clients have and we can’t help but channel that into helping them to just have incredible success. So that’s what drives us to continue to just push for more. What else can we do for, what else do you need? Those kinds of questions we’re always asking our clients. There’s a lot of potential here at jet, there’s a lot of room for growth and I believe we’re just getting started. Michelle Bishop: That was incredible. All of you, Carolyn and Alex and Lauren, thank you so much for joining us today. We are super inspired. When you said you were just getting started, you can’t see me, but I’m ready to go. I was ready to jump out of my chair, right? Stephanie and I are moving to Louisiana. Let’s do this. We’re going to help out. Thank you. Thank you so much for sharing with us today. This is such a cool program and we’re so glad we could just help get the word out and maybe other NAs in other states can get something going as well. Lauren Sanchez: Thank you so much for having us. This was such a pleasure. Carolyn LeBrane Tilton: And it was a lot of fun. Thank you. We enjoyed it. Alexander Andréson: And come visit us anytime you want. Michelle Bishop: Yes, we’ll be there. Maybe suspiciously close to Mardi Gras, but we’ll be there. Jack Rosen: And now for our spotlight story. Hi Josie, thanks so much for joining us today. Do you want to tell the folks listening a little bit about yourself? Josie Badger: Yeah, sure. Thank you so much Jack for being here and letting me be a part of this. So my name is Josie Badger and I live in Northwestern Pennsylvania with my husband and four dogs and two kiddos. And I’m a business owner, and so disability employment month is one hot month for my work and my passion, so I’m definitely excited to be here. Michelle Bishop: Josie, that’s great. Thank you. Can you just tell us a little bit, get us warmed up here. What motivated you to focus on employment issues? Josie Badger: Looking back at my life, looking at the barriers that I’ve faced, so much of that has been from discrimination bias and just an overall lack of supports and services. However, I worked from the whole way through school really to be able to have a good job, to be able to live the life that I wanted. And when I was graduating with my doctorate, I realized that I could not afford to be successful, and let me explain that a little bit further. I am a person with a power wheelchair. I have a ventilator that I use 24/7. I have nurses, I have personal care attendants and under medical assistance, which is Pennsylvania’s Medicaid, if you earn over a thousand to… Let me say that again. If you earn more than $1,200 a month, you’re at risk of losing those benefits and it wasn’t fair. I had my doctorate, I wanted to work, I was prepared to work, and that got under my skin. Josie Badger: I’m sure for a lot of the listeners when this would ring true, that when someone tells you you can’t or no, you fight even harder to do it. And so as soon as I graduated, I started J. Badger Consulting and that way I was able to work and keep myself poor enough at that point to be able to still have my waiver services such as nurses. But after that, I had the amazing privilege of becoming a campaign manager for the hashtag I want to work campaign, which is based out of the United Way of Southwestern Pennsylvania. Josie Badger: And through that work, I’ve been able to be the manager of this campaign that has gotten three bills unanimously passed that ultimately support employment for folks with disabilities with the most recent being medical assistance for workers with disabilities, workers with job success. And that is a state bill, but it’s really a Medicaid buy-in program that individuals with disabilities who have been working and earning can earn over a $100,000 a year in Pennsylvania and still keep their waiver and Medicaid services. So now I’m able to pursue those opportunities. And with that being said, I feel called to make sure that others can pursue their goals and dreams and be able to use their talents and gifts in our community. Jack Rosen: Absolutely. And I think you touched on something so important that a lot of folks in our community are penalized for wanting to succeed, wanting to work that on the one hand, we’re constantly being told that it’s important to be able to provide for ourselves but when we try to, we risk losing services and Medicare that cost more than what a person could reasonably cover working full time. And I think that is one of the perennial barriers to employment for so many folks in our community. With that being said, I’m wondering what are the most frequent issues and concerns you hear about from folks who want to work? Josie Badger: Over and over it is the concern of losing benefits, whether that be just basic Medicaid Medicare, whether it be in-home nurses, and unfortunately a lot of individuals are not getting all the information about what is possible, how much they can earn and still have those benefits. A lot of states do have some sort of Medicaid buy-in program for workers with disabilities, but often that information is not shared or even working with the governmental entities, individuals are often wrongly kicked off of benefits and are told they’re no longer eligible but that information is often incorrect. Michelle Bishop: Josie, it really struck me when you were talking about the idea of keeping yourself poor enough, that exact phrase of keeping yourself poor enough. I agree with Jack. I know a lot of people who have been forced into that position. Unfortunately, it’s a very real calculation that you’re forced to make. And I think it’s a rude awakening for a lot of us who are raised to believe that achievement and making something out of yourself are core American values. And then people with disabilities grow up and we say, wait a minute, not you. And so I’m wondering what advice you have for folks who are transition age who are going to be coming up against some of these barriers. Josie Badger: For those of you who either are transition age, are coming up to be transition age soon, or parents, it is a scary, scary time. And I spent a lot of my time initially really looking at how can I work, what makes sense? So I spent more time working to be able to work than the work itself. And I would highly recommend that you contact a benefits counselor. Vocational rehab will help support that. There’s various funders that will support that. A lot of waivers will pay for it. Explore your options, figure out do you need to jump straight into a full-time career? Can you test something out? And really ideally do it while you’re in high school because there are a lot of work trial benefits that are available for those of you in high school. And so try it out, see what works for you, and then talk to professionals. Don’t try to look the information up on your own totally. It’s confusing. It’s hard to interpret. Yes, there’s good resources but really contact benefits counselor. Jack Rosen: Just thinking about transition age folks a bit, parents can play such a role for young people as they enter the job market. And I know we’ve all gotten advice from our loved ones, sometimes good career advice, sometimes bad career advice. Sometimes they think that you can just get a job these days by showing up with a resume and they’ll get you an interview and not ask to leave the premises. But that said, either way, parents play such a role. So I’m wondering if you have any advice for parents and loved ones on how to support their family members as they enter the workforce. Josie Badger: Even before an individual is ready to get an official job chores, volunteering, all of that is so critical to start figuring out who you are as a person, what are you good at, what do you like? It starts to develop some responsibility and accountability. And so from a young age, I really believe that all of that work, even if it’s as little as feeding the dogs, which is one of the things that our kids do, can be really important. Talking about financial information management, setting budgets with them. But then as you’re looking at future careers, letting the youth figure stuff out themselves, letting them tour building, setting up job shadowing. And there are entities that do set those up, especially during the month of October. But giving those opportunities for them to discover what they’re good at and what they’re not good at. It is okay to fail, but it’s better to fail earlier in life when you’re not relying on the income of a certain job to have a roof over your head. So do that early and just try everything out as early as possible. Michelle Bishop: And try everything early and fail early is great advice. I really love that. So we are, as I’m sure you are too, celebrating the National Disability Employment Awareness Month. Could you bring it all home for us and tell us why this month is important to you? Josie Badger: Right or wrong, individual’s sense of importance value is often set on a person’s ability to have a job. And I’m not saying that is right. However, employment gives us not only money, but power. And as Americans, we often place the value of a human on what they can contribute. Employment allows us to be a part of society and a part of the decision makers in our country. And we as people with disabilities who have fought so hard to get through school to maybe live on our own. We have to be at the table to quote Hamilton, “In the room where it happens.” We have to be that and employment is one of those keys to get us in that room. So as we are in October and as we move forward, employment needs to be a focus of not only folks with disabilities, but the businesses that are trying to fill vacancies. Josie Badger: The government that’s always trying to find ways to save money. We know that employment is the right thing for our individuals. We know that we as people with disabilities are folks that can and should be contributing. And so employment is just important for everyone on both sides, whether you’re government, whether you’re folks with disabilities, but also if you’re a business, it’s not just the right thing to do because somebody said it was good to do it, it’s the business thing to do. We are good workers, we stay jobs longer than other folks, we work longer hours. And so it makes sense to hire us. Jack Rosen: Absolutely. I think you touched on something very important there. This progress can’t happen unless we have a seat at the table. So I guess one thing we should touch on though is, it’s not just us in a vacuum trying to get employment and the opportunities we need, someone needs to hire us, and the expectations of others plays such a role. I was wondering if you can speak on that a little. Josie Badger: One of the first that people come up to anyone and say is, “Hi. What’s your name? What do you do?” However, as an individual with the obvious significant disability, that’s not what people might say or ask when they first meet me. It’s often, “Oh, hi, what’s your name? Who are you with?” Assuming that I always need a caregiver. And so I want to ensure that we are changing the cultural narrative of what it means to have a disability in America. And so much of our legislation and government benefits define disability as the inability to work or to make a certain income and that’s not true at all. That has basically pigeonholed us into having only benefits if we are unemployed, not realizing we can do both. We can have a disability and be employed. However, we need those supports to be able to get out of bed and go to work in the first place. Josie Badger: And so it shouldn’t be based on how much we earn or our actual ability to hold a job, it should be based on what do we need to live a good life to be able to pursue our jobs, to have a family, and what will it take for us to truly live in the community? And that’s really important for us to change that narrative, both for maybe parents who are not sure how to encourage their child as they grew up into adulthood or government stating that benefits are only for people who are poor. And it is our job as individuals with disabilities to pursue job opportunities, to change that perspective on disability so that as soon as somebody walks up to us, they don’t assume that just because we have a disability, we’re not employed. We need to change that narrative. Jack Rosen: Before we let you go, I just wanted to ask you, you recently founded PEACOCK, a non-profit. Do you want to tell the folks a little bit about that? Josie Badger: Sure. Sure, I’d love to. The PEACOCK Consulting really comes from the initial work started by J. Badger Consulting, but our hopes with PEACOCK are twofold. One is to help support the leadership and empowerment skills of youth with disabilities and the second part is really to empower the rest of our community, regardless of age in becoming more involved in politics and various parts of change-maker and system change. And often folks are scared of that word like politics or working with legislators, but we’re talking about making sure that individuals with disabilities have that seat at the table and are able to contribute to bills legislation, talking through various barriers that people with disabilities face. Josie Badger: And we have found that legislators often do not know the barriers that their own constituents with disabilities face. They don’t understand how certain legislation can detrimentally affect our community. And so a lot of the work is about just getting our voice heard and making sure folks with disabilities know that their voice matters. And so that is what PEACOCK stands for, is making sure that whether you’re a young adult all the way through the rest of your life, your voice matters and letting individuals know where they can share their perspectives to encourage system change. Jack Rosen: All right, Josie, thank you so much for coming on today. Is there anywhere people can check out your work? Josie Badger: Sure. If you visit jbadgerconsulting.org, you can find about both organizations and you can contact me. I’d love to hear from you. Michelle Bishop: Josie. Right on. Thank you so much. This was awesome. I thought we were going to come on this month and just talk about employment a little bit, and instead you were like, “Employment is power.” And I’m so hyped for disability rights right now. So thank you. That was amazing. And we really appreciate your time. Josie Badger: Thank you. Jack Rosen: All right. There we go. I think that’s the question. I was just trying to get it while I had it. All right. Yeah, I think that’s definitely worth adding. Michelle Bishop: Well, thank you so much to all of our guests this month. That was incredible. The work that you do and your stories are amazing. Thank you so much. We love National Disability Employment Awareness Month, and we’ve been really excited for this episode. So thank you to our guests. And I guess it’s getting, I’m stalling, I’m stalling, but it’s getting to the point where I have to say, Stephanie, do you have a joke this month? Stephanie Flynt McEben: I always have a joke. Okay. But my question is, you need to pick… Wait, is a pumpkin a fruit or a vegetable? I think it’s a vegetable. All right, because it’s the type of squash. Okay. Pick corn or pumpkin. Michelle Bishop: Pumpkin. Stephanie Flynt McEben: Okay. Michelle Bishop: Pumpkin. I want pumpkin. Stephanie Flynt McEben: Okay. All right. So what do you do if a pumpkin gets hurt? I swear this isn’t too violent. Jack Rosen: I’m strong. Michelle Bishop: I’m thinking about squash. Stephanie Flynt McEben: Oh, that’s even better. What do you do if a pumpkin gets squashed? No. What do you do if a pumpkin- Jack Rosen: Wait, I think I got it. Michelle Bishop: Okay. Go Jack, go. Jack Rosen: You give it a pumpkin pack. Stephanie Flynt McEben: Yep, that’s right. Ding, ding, ding, ding, ding. Michelle Bishop: Not bad. Stephanie Flynt McEben: Thank you. Thank you, thank you. Yeah, Quinn told me that one was a good one. Michelle Bishop: You know I’m pretty basic for fall, so I’m down with a pumpkin joke. Stephanie Flynt McEben: Yes. All the pumpkin things. Michelle Bishop: It’s a good fall. Jack Rosen: I’m proud of myself and I finally got one. Michelle Bishop: Oh wait, is that the first time you got the answer? Stephanie Flynt McEben: Yes. Jack Rosen: There was one other maybe but I think, yeah, I think that was the first. Michelle Bishop: Pro host, pro host. Stephanie Flynt McEben: Pro host, pro host. Michelle Bishop: Go Jack. See, look at us being nice to you this episode and everything. Stephanie Flynt McEben: I’m always nice to him. Michelle Bishop: Autumn really is a magical time. Jack Rosen: Are we going to just brush over the part where Stephanie’s like “No, that’s a you thing.” Michelle Bishop: Yeah. Yeah, we were skipping that. Hey, Jack, why don’t you tell people where they can find us on social media? Jack Rosen: Sure, Michelle. You can follow us at NDRN Advocates on Twitter. You can find us on LinkedIn, you can find us on Facebook, you can find us on Instagram. We’re posting there more these days. You can follow us on Threads. It’s the exact same content as the other platforms but for people who use Threads, we even have a TikTok that we don’t and will never use, but you can follow us there. And as always, you can write to us at podcast@ndrn.org and to give one click plug, our documentary, Accessing Democracy is now out. You can find a link to it in the show notes. Stephanie Flynt McEben: Woohoo. Go watch the documentary. But until next time, bye.

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.

A summer heat wave can’t stop our intrepid podcasters. In this episode, 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 our spotlight interview from a hotel lobby in Spain, where he speaks with 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 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 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 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.