We mark National Disability Awareness Month with a conversation about self-acceptance and disability pride.
We mark National Disability Awareness Month by chatting with our FREED colleagues about the journey of self-acceptance as people with disabilities and the pride they feel as part of the disability community. Our guests share what it means to have disability pride in a world where we are still fighting for awareness and inclusion, and they discuss the importance of people with disabilities supporting each other. We’re joined by Brian Snyder, FREED’s Emergency Preparedness Coordinator, Lindsay Wells, our Information and Referral Specialist, and Jennique Lee, the Program Manager for our Yuba City office. We also mark the passing of legendary disability rights activist Judy Heumann, who died on Saturday at the age of 75.
CARLY PACHECO, HOST: Hi, this is Carly Pacheco, Executive Director of FREED and Co-host of Disability Rap. Before we play today’s show, we would like to mark the passing of Judy Heumann, a driving force in the disability rights and independent living movements. Judy contracted polio as a child and used a wheelchair her whole life. Her activism started early, when in 1970, New York City’s Board of Education barred Judy from working as a speech therapist in New York City schools, claiming that she would be unable to evacuate children during an emergency. She sued, and as a result, she became the first teacher in New York State to use a wheelchair.
Later, she would become a leader of the 1977 occupation of a federal building in San Francisco, which launched the disability rights movement and eventually led to the passage of the Americans with Disabilities Act of 1990. In a statement yesterday, President Biden said, “Her courage and fierce advocacy resulted in … landmark achievements that increased access to education, the workplace, housing, and more for people with disabilities.” Judy died on Saturday. She was 75. She will be deeply missed.
COURTNEY WILLIAMS, HOST: From KVMR and in partnership with FREED, this is Disability Rap.
BRIAN SNYDER: I will say that the one thing that I experience now is that I'm not angry at my disability anymore. What I'm angry about is that I did not follow the things that I love, which was theater, performing, and now stand-up comedy.
WILLIAMS: Today, we hear from three people about their journeys to accept their own disabilities.
LINDSEY WELLS: You can't define anybody else's disability for them. When people ask me how you do it or how can how have you accepted it sometimes, I'm like: well, that's my journey and I'm learning as I go.
WILLIAMS: That's all coming up right here on Disability Rap. Stay tuned!
HALEY SCHAFFER, HOST: Welcome to Disability Rap. I'm Haley Schaffer and I'm joined today by our production assistant, Courtney Williams, along with a roundtable of guests from FREED. As we mark National Disability Awareness Month in March, we want to explore the complexities of disability acceptance and disability pride. What does it mean to embrace life with a disability, especially in a world that isn't always accepting and accessible?
WILLIAMS: To explore these questions, we're joined today by Brian Snyder, Lindsey Wells, and Jennique Lee, our colleagues here at FREED, to talk about their own journeys as people with disabilities. Brian, Lindsey, and Jennique, welcome to Disability Rap. And Brian, if you don't mind, we'll begin with you. Tell us a bit about yourself and your disability. Where would you say you are in terms of disability acceptance?
SNYDER: I have a rare degenerative disease called Usher Syndrome type 2A, which causes blindness and deafness. I was born with this disability. However, I did not have disability acceptance until later in life, mainly because the first thing that happened is I had hearing loss. So, I wore hearing devices, and so I functioned well and did not have a lot of issues. Except, you know, people would make fun of me for wearing hearing devices or something like that.
But I didn't feel that I identified as having a disability, and plus, you know, that was the 80s and 90s. So, disability awareness was still being worked on, and so, I didn't, you know, I didn't have that awareness at that point.
So, throughout my life, I've been slowly losing my eyesight, and in 2008, at the age of 30, I stopped driving. And I'm 44 now. And then in 2015, I lost my ability to read normal print. Now, I'm very blind. I'm not able to see anything except light and shadows and some shapes, but that's it. So, you know, it's been a long journey. It's been painful and frustrating, and, you know, there is a, like, a notion of disability pride. And I do not have disability pride because my disability… And even though I was born with it, it's been a loss. I've been grieving it for a long time. I'm still working on it, because it's always changing and getting worse. And it's very difficult for me to have pride in a loss. However, with that stated, I do have pride in our disability community and our achievements for disability rights, awareness, [and] inclusion.
WILLIAMS: Thank you so much, Brian. Lindsey, I'll ask you the same question. Can you tell us a bit about yourself and your disability, and where would you say you are in terms of disability acceptance?
WELLS: I'm Lindsey and I have cerebral palsy. It happened during labor and delivery for me. So, when that happened - it was 1982 - and I was a twin. So, my twin started having complications. His heart monitor stopped in the middle of my mom’s delivery. So, they went in and did a C-section. But the OR room was delayed in getting us in in time. And I lost oxygen to the brain and had a stroke inside my mother's womb.
So, they had to pull us out within a minute of each other to save both of our lives, but they didn't realize that I had CP until 14 months later. I have accepted my disability to an extent, I think. I'm always changing, always growing. So, it's a continuous process of acceptance for me, and I think that it will always be a continuous process. And I'm okay with that.
I, like Brian, really don't have disability pride for myself. I've never been shown that in my life that [it] was okay or acceptable until recently. So, it's something that I have to work on, and I think that I will get there someday. But, like Brian said also, I feel like I am so proud of our community, and what we've done, and the great strides we've taken over time, especially since the ADA Act was completed.
SCHAFFER: And then we'd also love to pass the ball to Jennique and to ask her about the same question.
LEE: So, I have a movement disorder most descriptively called myoclonic dystonia. Like Lindsey, I also have a twin, but mine is identical. And we are unsure if the illness is congenital or not, like if we were born with it or not. Also, unsure if my twin has the same disorder or not.
So, I didn't have symptoms until I reached college. The first time that I had the symptoms - just kind of head shaking; my arm reaches out when I don't expect - those were really the only two symptoms I had at that time. They went away naturally within six months or a year, and we don't know why. And then, 10 years later, they came back. So, I expected them to just go away again. But since it's been another 10 years, again, dating myself. Pretty sure that they're not just going to go away like they did before.
So, disability pride has really been a journey for me, because it did start later in life, and I didn't know about it, about the earlier diagnoses. When I got it the second time really, I started dropping things at work and unable to… I had trouble driving and stuff because my blood sugar would just drop. And I started being unable to find words and just a variety of different things that weren't expected. I ended up losing a couple of jobs based on disability. So, I was able to get Social Security pretty quickly, but I think that really played into a lack of disability pride, a lack of acceptance of my disability. I felt like I couldn't do anything anymore and I didn't have value.
It was when I started volunteering at the Disability Action Center, which is very - for people who are familiar with FREED - they're very similar. It's just in Butte County, instead of down in Yuba-Sutter. And I volunteered with them. And then we did a light parade and I helped. I helped to put together a pirate ship, and it meant doing things over my head. And before that, I couldn't at any time… I lifted my arm above eye level I would - it would - shake, and I was able to put this pirate ship together and help do it without any shaking all night, even with the light changes and everything. And that was when I realized I could work.
So, I got a job there when it came available and then have kind of progressed in my working. Without Disability Action Center, I wouldn’t be where I am today, and I wouldn't know about disability pride. And I wouldn't be as accepting of as I am. I wouldn't say I'm completely proud of myself, but I'm very proud of the work that I do and the fact that I have been able to return to work.
WILLIAMS: For our next question, let's start again with Brian. How has learning about and accepting your disability changed your life? Has your perspective shifted over time about the accommodations that you use?
SNYDER: I'm very grateful for the progress that has been made, particularly the Americans with Disabilities Act and the Capital Crawl that made it happen. I, you know, I'm so grateful that I'm able to, you know, have access to so many things now that weren't, when I was born, weren't accessible. I think about what, it'd be, what would it be like if I was born in the 1930s or something and, you know, had to learn Braille at my age, and how difficult that would be. I think about those things, and I think about how, in my mind, what the main issue is in terms of accepting disability is: it hasn't really happened until recently.
Because, I mean, actually, it really happened when I started working for FREED, because at that point, I had made the decision. I lost most of my functional vision, and I needed to change my life. I started, you know, being around other people with disabilities, which was helpful to learn their experiences. It also showed me what I was doing to myself in terms of limiting myself, because throughout most of my life I was an actor. I went to Cal Arts and did my undergraduate degree there in acting. And I got my master's degree in directing at UCLA.
So, my trajectory was the arts, and so when I started losing my ability to do things, I told myself: oh, I'm not able to do this anymore. I have to do something else. What I heard most of my life was: do it for as long as you can. What I needed to hear was a perspective of disability which was: you can still do what you want to do you just have to do it differently.
So, I have a lot of regrets surrounding that because, I, you know, my ball… I still love the arts and I miss it. I miss being there. I miss the collaboration. I miss everything about it. And so, that is my fault. I did not… I put a roadblock that shouldn't have been there. I think it has to do with our society and how people view people with disabilities. And I think, you know, I had. There was a certain amount of ableism ingrained in me from a young age. I think that stayed with [me]. It made it, informed my decision-making throughout most of my life.
So, with that said, I feel that it wasn't really until 2018, when I joined FREED, or maybe shortly before that, when I fully started to accept it. Because I had an experience in 2017, where I realized that so many things were happening. I lost my dog and my cat, and I lost a massive amount of eyesight. And I was like: I need to make a change in my life and start doing things differently. So, that is what happened and that is how I came to a certain amount of acceptance. Some days I don't accept it. I get pissed off and I get angry. And I'm like: why is this happening? And why do I have to do this and go through this? And I get angry, and I get angry a lot.
I will say that the one thing that I experience now is that I'm not angry at my disability anymore. What I'm angry about is that I did not follow the things that I love, which was theater, performing and now stand-up comedy. What's frustrating is that, more than losing my eyesight, because, like, I know I can do those things even with my disabilities. What has been the most difficult realization most recently is: I don't mind being blind now. It's what I do mind is not doing what I set out to do originally, and that is another form of grieving that I'm experiencing currently.
WILLIAMS: Thank you so much, Brian. I appreciate that reason, the regret is not necessarily about your disability, but about the things that you've let it stop you from doing. And that you've shifted that so that you are gonna do those things. So, good for you. Thank you. Thank you. Keep it up with the comedy. You're very funny.
SNYDER: I appreciate the support. Thank you.
WILLIAMS: Lindsey, how about you? How has learning about and accepting your disability changed your life? Has your perspective shifted over time about the accommodations that you use?
WELLS: Yes, I was diagnosed in the early 80s, so when I was diagnosed there wasn't too much to know about how things would happen for me progressively. CP [cerebral palsy] is not progressive in the nature where something bad will happen to me at the end of my journey. But because I… people with CP [cerebral palsy]… Everybody gets older. So, I've had to accept that things that I once was able to do I'm not going to be able to do for very much longer. Or I haven't been able to do them in quite some time. And I can get frustrated in that moment of not understanding why I can't do this anymore, because maybe three years ago or yesterday, I could, you know? That's an acceptance that I still haven't, kind of, let myself not grieve. But I guess it would be a grieving process. At the same time, accepting the things I can do, and I can right now. I can work, and I can help people and through my disability. Maybe I can help someone come to terms with how they can deal with their disability. Disability is only that… You can't define anybody else's disability for them. They're going to have to learn and accept and grow the way they can.
So, when people ask me how you do it, or how can, how have you accepted it, sometimes I'm like: well, that's my journey, and I'm learning as I go. But I hope your journey, you know, goes well for you. And that has helped me kind of except myself as who I am today and not who I was last year or the year before that. You know, I've come to the realization that I'm, you know, just me, and I'll be me. No matter what happens with me physically, I'll always be me. So, you know, I can accept that. I think with the different accommodations that I have had in the past, I think that helps too, because I've learned how to modify things to help me get around my home, at work, and that has helped me accept so much just by learning a different way to do things.
WILLIAMS: Thank you so much, Lindsey. Jennique, how about you? How has learning about and accepting your disability changed your life? has your perspective shifted over time about the accommodations you use?
LEE: When I think of disability - my disability - I always think of my movement disorder, but actually that's not the only thing that I've dealt with. When I was young, I was diagnosed with physical disabilities. My muscles didn't develop as fast as others. And I remember being on the playground and thinking that that made me really special and proud, until people started calling me a specific word, which we won't mention, in which case it was no longer a source of pride for me.
Then in fifth grade, I had an amazing teacher, Mrs. Lee, and she realized that I had vision tracking difficulties relating from the muscles not developing fast enough. She actually - instead of having me fill in the bubbles for the scantron, again, aging myself - I'd write the answers in the booklet. And it was before the ADA, and therefore she could have lost her job for doing that. But she did it because she recognized that that was what was holding me back, rather than my actual abilities.
I went from below grade level to the highest scores that I could do, which was called post high school. At that point part of my journey has been realizing what physical things I can and can't do, but also what intellectual things I can and can't do. Like I said, the Disability Action Center helped me out so much with that and with reasonable accommodations at work. I didn't ask for any for a long up until, I should have maybe. That would have helped the two jobs that they didn't have. If I had, you know, put in writing “here's what I need. I need somebody to carry these files for me,” or whatever, maybe that would have really helped, and maybe it wouldn't have. I can tell you that I look at the agency or where I'm working before I think about what reasonable accommodations I'm going to ask for. I think that they're, because at some places, I've felt a real stigma about having any sort of disability and felt like if I ask for a reasonable accommodation it was actually going to threaten my job. Other places, like here, well, where I feel free to ask for whatever I need and including having my service dog come.
WILLIAMS: Gratitude to the allies and encouragers over the years who made those accommodations happen, even if you weren't sure that you needed it yourself. Thank you all for sharing that.
SCHAFFER: We've talked before on the show about the idea of each disabled person having a unique experience, and even those who share the same disability. How do you think we can increase cross disability awareness?
WELLS: I have, in my right arm, because of my movement disorder, I have dystonia, and I have always been embarrassed by it. When I was a child, if we were out to dinner with family and I'd hit the waiter and the water would go flying off of the tray, I would put my head down on the table and cry. And I know it seems like “oh Lindsey, that's so sad,” but something happened a couple months ago. I started the job that I'm working at now that made it okay for me to have a movement that was not planned. It was not something that I didn't want to happen. And they made it okay, and for the first time in my life it was like, someone else got it, and someone else understood and had compassion and empathy. And it was an amazing feeling and so I appreciate it when other people with disabilities understand and have empathy to your disability because it makes it - I don't want to use the word bearable - but it makes it like a silent… we got this together kind of thing. And I love that, you know, and I appreciate that moment more than that person will know.
WILLIAMS: Thank you so much, everybody. This has been such a great conversation. We need to start wrapping up, but I have one final question for each of you. Thinking about Disability Awareness Month and how we bring this to the non-disabled community. I love Lindsey's comment about gaining from Brian's experiences. I love that although each of you has brought something different to this conversation, in terms of your own experience as a person with a disability, and how you all have learned from each other and grown from each other. And I feel like there's an opportunity to really share that appreciation for diverse experiences. So, what would you say about that and how we can bring this to the rest of the world?
SNYDER: Well, I think one of the things is being present and being out in public. I can say that I for… There's a period that I was not going out in the public. I think that can be problematic for two reasons: one is when we're out and about and we're talking to people, it's good because they learn about the disability experience. And it's difficult for the person with a disability. I mean, I've been out and I had people shout at me: you're brave and/or even funny things, like You're Daredevil, you know, from the comic book. And/or some people, you know, will grab me - if I'm standing on a corner - and walk me across the street when I have not asked them to do that. And so, it can be frustrating to be out in public because people do not have the awareness of disability sensitivity to communicate properly to someone with a disability.
I think it's also important. We need to get out there so that those conversations happen. And we can make the corrections and say: no, please do not grab me. It's better if you say, “how can I be of assistance?” You know, I think that's one of the issues as people with disabilities, we often isolate ourselves because it's less stressful. But I think that we also need to be out there so that people can interact with us and understand it, like Lindsey was saying, have empathy and compassion and create a greater understanding of what our experience is. I feel, that you know, it's about that having that shared experience and understanding that will make the changes that are needed.
I mean, a great deal of progress has been made since the ADA came about, but there's still a long way to go in every aspect of disability, whether it be accessibility, inclusion, awareness. There's still a long way to go, but I'm grateful for the progress that has been made and for the sacrifices that were made by those at the Capital Crawl and before that. You know, we have a lot of work to do to get to a place where there is full inclusion and awareness and accessibility. It's funny that, you know, I think, wow, I mean, we made a lot of progress, but some days, I'm like: wow, I feel that we haven't made any progress.
So, it depends on the day and the people that we interact with, but I think that if we continue talking with each other and being out and being present and visible, that change will eventually come about through those interactions. Disability is a natural part of being human. I think the issue is how we ourselves deal with it. I think it's - with anything that happens in life - is how we react to it that determines everything.
WILLIAMS: That was Brian Snyder, FREED’s Emergency Preparedness Coordinator. Before that, we heard from Lindsay Wells, our Information and Referral Specialist, and Jennique Lee, the Program Manager for our Yuba City office.
And that does it for this show. Disability Rap is produced and edited by Carl Sigmond, with support this month from Haley Schaffer and me. You can go to our website, disabilityrap.org, to listen to past shows, read transcripts, and subscribe to the Disability Rap podcast. You can also subscribe to our podcast by searching Disability Rap on any of the major podcast platforms. We are brought to you by KVMR in partnership with FREED, and we’re distributed by PRX, the Public Radio Exchange. I’m Courtney Williams with Haley Schaffer for another edition of Disability Rap.