Reflections 34 Years After the Americans with Disabilities Act

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LINDSEY WELLS, HOST: From KVMR and in partnership with FREED, this is Disability Rap.

REBECCA DONABED: Today, we deal with a lot of bias against this law.

WELLS: Today, reflections on the Americans with Disabilities Act 34 years after it was signed into law.

DONABED: Even though it's a good law, we still need to go further.

WELLS: That's all coming up on Disability Rap. Stay tuned.

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WELLS: Welcome to Disability Rap. I'm Lindsey Wells.

Last month, we marked the 34th anniversary of the Americans with Disabilities Act of 1990. The ADA granted equal rights and equal protection to people with disabilities in the United States. Today, we wanted to celebrate the anniversary of the ADA by looking back and looking forward at all the work that still needs to be done to make a truly inclusive world for all people regardless of ability. We're joined by two guests. Beck Levin is a systems change advocate at the Dayle McIntosh Center, which is the Independent Living Center in Anaheim, California. Rebecca Donabed is also with us. Rebecca is a community organizer with Resources for Independence Central Valley, the Independent Living Center in Visalia, California.

Just one note for our listeners, Rebecca has a speech disability, so you'll hear Rebecca first, and then you'll hear our production assistant, Courtney Williams, revoicing what Rebecca says. Beck and Rebecca, welcome to Disability Rap. It's great to have both of you with us. I want to begin by asking each of you. Rebecca, we'll start with you, then Beck. Where were you when the ADA was signed, and do you remember what you thought the impact would be on our country?

DONABED: Hi. My name is Rebecca. When the ADA was signed, I was 10 years old, so it didn't mean a big deal to me because I was a child.

WELLS: The same question for you, Beck. Where were you?

BECK LEVIN: I was actually what my family would refer to as a twinkle in my mom's eye when the ADA was signed. I was born in '92, which was the year that actually Titles I, II, and III of the ADA were effective, or went effective on my finding. It was signed in 1990. My brother was alive just barely, but I was still a twinkle in the eye of my mother and father.

WELLS: Because of that, Beck, you don't know of a time before the ADA. Can I get a follow-up question for both of you? Can I ask, Rebecca, what was it like for you as a child at that time? Then to follow up, Beck, you've never known a world without the ADA. How has that impacted the both of you?

DONABED: I really don't remember what it was like before the ADA. I was a kid. I just remember me getting on with the business of being a kid, just playing, but I do remember teachers and other people being careful around me because I am disabled. I remember me trying out different elementary schools to be in the public. It was pretty cool.

WELLS: Beck, what about you? How has the ADA impacted you as a person that was born in 1992?

LEVIN: Before I started working in disability rights, I didn't know a whole lot about the ADA except that it was a law that had been passed. It affects people with disabilities or is supposed to assist people with disabilities in gaining equal rights and protections under the law. I learned in this job what life was like prior to the ADA. It was very surprising and eyebrow-raising. I had this very vague history, prior to working here, of where the ADA fit into disability history. I knew that there was, way back in the 19th century, a lot of discrimination, a lot of terrible, terrible behavior in Western world with regards to people with disabilities.

I know the ADA definitely helped that, but at the same time, I also know that the ADA wasn't perfect when it was signed. It's still not perfect. It's lacking a lot of financial mechanisms to actually support its implementation in an effective way. I would argue that it was a start, and I think it was a monumental start. It was great. I think it was the next extension of the Rehab Act of 1973, so it made sense to enshrine these in law. I think that had there been more of an emphasis at signing for making those mechanisms for enforcement known, we would be a lot further along than we currently are. However, I think that it was a good first step.

It's both surprising and not surprising to me that it took two years to start implementing the ADA. I feel a little bright spot for being born in the year the first ADA measures became effective.

WELLS: Thank you. That leads me into my very next question. Rebecca, I'm going to ask this to you first, and then I'm going to ask, Beck, your opinion as well. First, I want to take us back to 1977, to the 504 sit-in, because that really made the groundwork for the organizing that led up to the signing of the ADA. As our listeners know, the 504 sit-in was the longest occupation of a federal building in US history. Through their action, people with disabilities successfully demanded the Section 504 of the Rehabilitation Act of 1973 that Beck just brought up be implemented. If Section 504 had never been implemented, do you think we would have even had an ADA? If not, what do you think our country would be like today without either the 504 or the ADA? Rebecca, can we start with you?

DONABED: I think it would eventually have been signed and eventually would happen, but it would have been slowly and much more difficult than it has been. Today, we deal with a lot of bias against this law. Even though it's a good law, we still need to go further to further define our rights and our representation. I think that it will go a lot further because of today people seem to be more attentive. If the ADA had never been, I wouldn't be here with you. If the ADA had never been, me and Beck wouldn't have a job. I wouldn't have a house. I would probably live in an institution or with my parents still. The ADA is a good thing, but like I said, we need to go further than that.

WELLS: Thank you. Beck, can I bring you in here, too? Same question. What do you think about this?

LEVIN: What Rebecca said, first of all, was spot on that the ADA was foundational to disability rights going forward that a lot of folks would be institutionalized or not have independent living. I definitely wouldn't have a job, as she rightly said, if the ADA hadn't been passed. What I will say is that I think to quote probably slightly inaccurately, Martin Luther King Jr., the arc of the Moral Universe is long but bends towards justice, I believe is the quote. I do believe that eventually, we would have gotten to something relatively similar, but I think it would've taken a lot longer. I think that it would have even less teeth. That's not to say the ADA has a lot of teeth, but it would be even less effective.

Even more so one of the key Supreme Court cases in '99 heavily relied on the ADA Olmstead versus L.C. which we later found out was Lois Curtis. May she rest in peace and power. That certainly would not have passed without the ADA. I think that enshrining the ADA and law was definitely a good first step. I will say as someone who was born two years after the ADA was signed, it is a bit frustrating to me that it feels like we've stagnated a bit. There's a lot of court cases going through, for example, in I believe it was-- I think this is a Supreme Court case it might be just Ninth Circuit case, but there was a case that harken on the ADA with regards to working from home as an accommodation.

It was with, I think, United Airlines, and that individual did win the right to work from home as it did not impact their work at all. I guess to summarize, I think that we would have something maybe slightly different from the ADA if we didn't have the ADA, it would have come later and it would have stretched out this timeline even longer. I'm very, very happy that we have the ADA.

WELLS: Beck, you brought up the point where you said that something could have been created now. How differently would an ADA act of today if it had been created now instead of 1990? Can I ask that of both of you as well? Beck, can we start with you?

LEVIN: I think that the current political climate should definitely be taken into consideration, and I won't go too far in depth in that. I don't think that if someone floated an act that protected people with disabilities in the current Congress, that it would pass just flat out. I think that it was a very unique set of circumstances that allowed the 101st Congress to pass it in 1989. I don't know if that is entirely replicable in today's current political climate. If I were to wave my magic wand, first of all, I wouldn't want to get rid of the ADA when it passed.

If the ADA hadn't passed and I had a magic wand and was able to pass something ADA-like through this current congress and have it signed, it would be much the same, I think, but stronger, with multiple enforcement mechanisms and clear paths to disciplinary action for organizations that don't abide by the ADA.

WELLS: Thank you. Rebecca here on Disability Route and for Beck, too, we often ask our guests to share their disability stories with us. Today, thinking about the anniversary of the ADA, can each of you share a bit about your life and how the ADA has supported you? Rebecca, can you start us off?

DONABED: Okay. The ADA is important to me in so many ways. Even though I didn't remember the time before the ADA, the ADA has supported my life and the advocacy. As an advocate, I'm free to advocate, to be an advocate for as long as I want. I've been a long-time advocate like most people with disabilities. The ADA gave me the right to even get on the bus and to get to work. Because I do take the bus. In general, it has brought on other laws like the ADAPT. They could have a wheelchair lift or ramp on public transportation. I could get on the train, wherever I want to go. I could even go out with my friends to whatever we're doing. The ADA made it a lot easier for people with disabilities to be in public. To do with that, the ADA has made it easier for me to work. It gives me accommodations to work, for instance, it gives me the internet. It's a lot, but it doesn't just have things accessible for people with disabilities. I could literally work and work easily. I could produce better, or I should say, produce the same materials as other people.

WELLS: Thank you, Rebecca. Beck, I want to get your story as well. Then, Rebecca, I'm going to ask you a follow-up question a little later. Beck, can you tell us about your disability story a little bit?

LEVIN: Most definitely. My disability story is that I was not born into disability. All of my disabilities are invisible. I acquired my disabilities throughout my life. I collected my "Pokemon" of disability, my first one, probably when I was about 16 or 18. I had a pretty bad anxiety. Things evolved from there. I had a number of misdiagnoses and re-diagnoses for my mental health. Eventually, we landed on complex post-traumatic stress disorder as my current mental health disability. I also have piriformis syndrome, which essentially means that sometimes I hobble around because my left leg is in a lot of pain. I have ADHD. I work in very unique ways as well.

I do a lot of sprint work, to me in my mind. I can do a lot of work very quickly, heads down, but then I need a break to just kind of look at the flowers, so to speak. I think that the ADA really enhanced my life by building foundation frameworks so that when I came of age, it was taken-- Not taken for granted. It was an assumption that if I had disabilities that, to a degree, they would be accommodated. I will also say though, as a person with invisible disabilities, oftentimes, it's a double-edged sword because I don't get the same level of face-to-face discrimination as someone with a physical disability. However, there is a lot of erasure when it comes to that.

I've received a lot of gaslighting. Even with my CPTSD diagnosis, I have been told by a number of people that I'm not disabled enough, that my disability that I'm just "faking it", that it's really not that bad. I just have to cheer up buttercup. Obviously, those things aren't the case. It's taken a lot of unlearning for me to honor my own body's needs to the point where actually when I did get a physical disability, when I did have piriformis syndrome, that started last year in October, and I'm still dealing with it. Typically, piriformis syndrome is something that does not last very long. You do your stretches, you build muscle and it's gone-- or not gone, but it stops to a degree or gets less severe.

Because I ignored my body's needs until February, it got to the point where I could not walk across my apartment. I couldn't walk my dog. It was really, really bad. I was working from home in my bed, had my laptop way up. It was crazy. I think that if the social climate were a little bit different in invisible disabilities, and disabilities, in general, were treated more positively and in a way that is integrated in society that if I was told at one point in my life I'm probably going to have a disability, that would have been revolutionary for me and would have shifted how I listened to my body, I think, a lot.

WELLS: Thank you, Beck. I just want to thank you both for those stories. I know sometimes it's hard to tell people about those stories, but they're so important to share with people because we all share that commonality. I appreciate that so much from both of you. Rebecca, I completely forgot to ask you what you thought about, if the ADA was signed now or the equivalent, would it be any different, in your opinion, than the ADA of 1990?

DONABED: It's completely okay that you forgot. Don't worry about it. I think if it was signed today, it wouldn't be as impactful as it did back then, and that's because today we have the internet. People could just email them letters and we would have people sitting in Washington, sitting down there physically beating down their doors. Back then, I know it was a lot more effort. A lot of people who were active. Today, we could do as much email as we want. We could go to the media and whine about it. We could go to TikTok and talk about it, but it would fall on deaf ears because you could easily scroll past TikToks, or you could easily not answer your email and send it to the trash or to the spam, or if you do read them, you could easily forget about it.

If enough people come knocking at your door, yelling at you, and saying, "Hey, listen, we need this and this and this," then you will not forget about it and it will make a big deal. Yes, I think it would be not as big of an impact as it was back then.

WELLS: Thank you, Rebecca. We talked about the present and past, but let's look into the future a little bit. What are some of your hopes and dreams for further legislation on the state and federal level to continue and expand the vision of the ADA? First, can I get Beck to answer that? Rebecca, I'd like you to come in with what you want to say.

LEVIN: I will say that in the wake of the decision of Johnson versus Grants Pass, the Supreme Court decision which basically states-- or the decision allows people who are unhoused to be prosecuted for being unhoused and for being on the street. That, to me, is a huge violation of the ADA. There is a strong correlation between being unhoused and having some sort of disability, be it physical, mental, any type of disability, psychiatric. The way that I see the future of the ADA going is that we need to start recognizing the intersections of these things. Folks who are multiply marginalized are the ones that often experience the most intense discrimination.

Someone who's a person of color, who may be transgender, gender non-conforming, or intersex, and has a disability is probably going to come up against a lot more barriers to getting the things that they need to live independently than, for example, myself who even though I am a white presenting person and even though I am trans, I'm often not read as trans because I'm very female passing. All of my disabilities are invisible. I hold a lot of privilege in that. I think that recognizing those intersections and going forward in stride with other communities that are affected by these multiple marginalizations is going to be integral to furthering the reach of the ADA.

I think that our only way forward to making the rights of people with disabilities more solid in the United States would be to create coalitions and to recognize how these things intersect and how it's really not something that you can pull apart like, "Oh, this is a disability issue, this is a gender-based issue, this is a color issue." Sometimes it's all of the above. For example, I won't go too much into the details of it, but I had a consumer that was multiply marginalized. When they were assaulted, the person assaulting them didn't say, "I'm doing this because you're X, Y, Z." They just did it. We know it's discrimination. We don't know what type and therefore we can't prove anything.

That's where I see things going. My apologies. I should have given a trigger warning prior to mentioning the assault, but that's where I hope that we're going forward with disability rights law.

WELLS: Thank you, Beck. What about you, Rebecca? Same question.

DONABED: As the world changes and as we are the people that grow old and expire and the younger generations will come, they won't have the attitudes that we have now. They will be much more accepting of disabilities and everybody. If they don't have some kind of disability, if they don't have it now or yet, they will have some kind of disability. Some of life's changes. As we grow older, we need to keep in mind the history and what our ancestors, like Judy Heumann, did for us, and Ed Roberts did for us. That was just to start us off on the adventure. I really do think there will be more and more and more acceptance to disability.

WELLS: Thank you, Rebecca. I want to expand on that point that our generation will get older, and we all have disabilities right now, and as we age, it will affect us more. Thank you for that point, Rebecca. I want to go to the next question. You both work in advocacy. What advice would you give folks in the community given the current political climate about making sure our rights remain in place and can be expanded going forward? I'll start with Beck.

LEVIN: The biggest piece of advice I'd like to give folks with disabilities is to not trivialize your experience. If something happens and you are affected by it in any way, then that thing happened and is a valid experience. I feel like a lot of times we invalidate our own experiences, not by saying that it wasn't real, but maybe it wasn't worth reporting or was it an actual violation of the ADA, such and such and so and so. I think that it's always worth reporting because even if it's not a violation of the ADA, even if it's not a violation of, for example, Unruh or The Fair Housing Act at the California level, then it draws attention to probably another issue, probably an oversight in the ADA.

Just because it's not illegal as per the ADA doesn't mean, first of all, that it's not illegal in general, but also not that it shouldn't be illegal. One of the ways that we can make the biggest strides forward is by reporting, is by documenting. If you're experiencing discrimination, document as much as possible, write it down where you can access it 24/7, so on and so forth. Lastly, I want to promote that I actually spoke to, I think their roles is community outreach manager or something along those lines at the federal level who helped revamp the website ada.gov.

For those of you who don't know, ada.gov got a wonderful revamp of their website. It's a new team running it. They also have a link at the top of their bar, I think it's on the top right now, to file a complaint. It's the furthest right option on their toolbar at the top of their page. I have been told by this representative that just encouraging, pressing the issue, "If you don't want to file anywhere else, please just file with us," is what they said. To the point that I'm trying to make, she was mentioning that even if it's not something that's currently illegal, they take that information, they bring it to their higher-ups, and they suss out, "Why is this happening, why isn't it illegal?"

As someone who's filed discrimination complaints, even though that's a really frustrating and retraumatizing process, if you have the spoons for it, if you have the energy to make a complaint, I would highly, highly, highly encourage you to do so because that is integral to us moving forward in the current political context and enshrining our rights as people with disabilities in the United States.

WELLS: Thank you. Rebecca, can you chime in here to the same, how you feel like regarding this question?

DONABED: I would say the same thing as Beck because if it's happening to you, the same is happening to somebody else and it only takes one person to complain about it. Then the other people will say, "The same thing happened to me." It only takes one person to say something about it.

WELLS: That was our conversation with Rebecca Donabed, a community organizer with resources for Independent Central Valley in Visalia, California. We also heard from Beck Levin, a systems change advocate at the Dayle McIntosh Center in Anaheim, California.

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WELLS: That does it for the show. Disability Rap is produced and edited by Carl Sigmond and Courtney Williams. 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 Lindsay Wells for another edition of Disability Rap.