Thirty years ago, President George H. W. Bush signed into law the Americans with Disabilities Act.
It was the first comprehensive civil rights law for people with disabilities. It offered protections against discrimination and imposing accessibility requirements in workplaces and in public.
The ADA was a landmark achievement, but the fight for equal rights is far from over.
Here’s part of what activist and editor Alice Wong wrote for Vox, amid the coronavirus pandemic in April 2020:
The debates on health care rationing unveil how our society devalues vulnerable populations. Draft guidelines from various states and health systems identified people with dementia, cancer, intellectual disabilities, and many other pre-existing conditions as those who will not benefit from treatment compared to younger, healthier, non-disabled people. Dr. James Keany, an ER physician at Providence Mission Hospital in Mission Viejo, California, was quoted recently in the Los Angeles Times: “As it stands in the US, if your family member is adamant that you would want everything done and you’re 90 years old, wearing a diaper, severely demented, you would get put on a ventilator … Most countries consider that malpractice because what are you saving that person for?”
And protests over police brutality have sparked discussions of the mistreatment of Americans with disabilities by law enforcement.
What did the ADA accomplish? And what work is left to be done?
Find more of Alice’s comments on the conversation in this Twitter thread.
Eugenics & ableism is a HUGE issue.
In Texas, a Black disabled man named Michael Hickson died 6 days after doctors withdrew nutrition and hydration because he had the coronavirus and his doctor
— Alice Wong (@SFdirewolf) July 2, 2020
TRANSCRIPT
Celeste Headlee: This is 1A. I’m Celeste Headlee in Maryland. I saw a photo of disabled people protesting in Philadelphia in 1990. And one man has placed a sign on the back of his wheelchair that says, “I can’t even get to the back of the bus.” When the ADA, the Americans with Disabilities Act, was signed in July of 1990, it brought a huge number of changes that would improve lives significantly for millions of people. But the fight for accessibility was never just about ramps and closed captioning or equal pay. It was also about human dignity and the right to live free from discrimination. And some of you are very aware of that.
Clip: This is Jane calling from Decatur, Georgia. I celebrate the 30th anniversary of the Americans with Disabilities Act because I am a wheelchair user. I survived a spinal cord injury in 1980. I have spent 40 years as a person with a disability living inside a sociological construction of identity that begins with the negative prefix ‘dis.’ The Americans with Disabilities Act firmly grounds disability rights as a civil rights issue, and over the past 30 years, I have watched the world begin to change. So I really appreciate all the advocates who preceded me, that helped ensure that our world and our communities are for all of us.
Celeste Headlee: Thank you for that message, Jane. We will share your stories and comments throughout this hour. So please share your thoughts with us. You can find us on Facebook or tweet us at 1A. And we have three disability rights advocates with us. Joining us from Washington, D.C. Is Judy Heumann. She was a special advisor for international disability rights at the State Department under President Obama. She’s also the author of a new memoir called “Being Heumann, An Unrepentant Memoir of a Disability Rights Activist.” Welcome to 1A, Judy.
Judy Heumann: Thank you. Great to be here.
Celeste Headlee: With us from San Francisco is Alice Wong. She’s the editor of a new anthology called “Disability Visibility: First-Person Stories From the 21st Century.” It’s great to have you, Alice.
Alice Wong: Hey, Celeste.
Celeste Headlee: And with us from Brooklyn is Britney Wilson. She’s a civil rights lawyer at the National Center for Law and Economic Justice. Thanks for joining us as well, Britney.
Britney Wilson: Thank you for having me.
Celeste Headlee: I wondered if I might ask all three of you to choose a provision in the American with Disabilities Act and tell me what it did and how it maybe… it impacts your life. I mean, it’s possible that either people weren’t alive before the ADA was passed or they’ve forgotten how much that legislation did. Um, and maybe I could start with you Judy, since you fought to get the ADA signed into law. Can you pick out a provision for us?
Judy Heumann: Sure. Um, let me also say that before the ADA, there were a number of other important pieces of legislation that we don’t need to discuss today, but I think the listeners need to know about, one of them being Section 504. For me with the Americans with Disabilities Act, Title I is one of the most important provisions which focuses on employment. And having been denied a job, when my first job that I applied for to be a teacher in Brooklyn, New York. So glad to hear from Brooklyn, Britney. Um, and I was denied my teaching license, uh, in writing, paralysis of both lower extremities, sequelae of poliomyelitis. Uh, Title I of the Americans with Disabilities Act makes it illegal to discriminate against one based on their disability, if they meet the qualifications for the job. And so there are millions of disabled people in the United States who have disabilities of working age, many of whom have experienced discrimination either in entering the world of work or in being able to advance in employment. We have seen, um, over the last 30 years, greater emphasis being placed on enforcement from the Equal Employment Opportunities Commission, more disabled people moving into the world of work, albeit that the unemployment rate for disabled people is still the highest in the United States. Um, the figures are staggering, but nonetheless, the law is there. It is beginning to make a difference.
Celeste Headlee: Alice, could you pick out a provision for us that you think is particularly significant?
Alice Wong: Well, I think what I want to share is that, you know, I was a sophomore in 1990 when the ADA passed. And I would say that in going to college and to go to graduate school, uh, the ADA was absolutely [inaudible] because, you know, I needed to be in an accessible school and I needed to find housing. And all of these things, I think, happened a few years after the ADA passed, but there were still, you know, a lot of transitions, a lot of [inaudible], how to try to get ready. I really recall going to a graduate school and they were telling me, Oh, to be able to do a transition plan, we’re working on it. But they knew that they were absolutely required and obligated to accommodate me, even though things do take time to change, particularly at the [inaudible] of it. So I am incredibly changed by the ADA. I don’t doubt that coming into adulthood and getting to have educational opportunities… that would not have happened without this access.
Celeste Headlee: That’s a really good point. I was reading a, a piece from a woman named Sheri Byrne-Haber, who said, “My high school had many, two-story buildings, but no elevators. For the one class I absolutely couldn’t live without, I bribed members of the football team to carry me upstairs every day at the end of lunch. When my parents complained, the school told them my other option was attending the school for disabled children.” Um, can I put this question to you, Britney, as well? Can you pick out a provision?
Britney Wilson: It’s almost impossible for me to pick out a provision. Um, I’m 30 years old. So I actually was born the year that the ADA was passed and I don’t, I don’t know a world without the ADA. So it’s a particular honor for me to be on with, with Ms. Heumann, who I know is instrumental in its creation and its passage, uh, because I know that I wouldn’t be here without it. Um, but I guess I would say Title II, if I had to, which prohibits discrimination in the provision of public services. That’s the provision that I, that I work most within in my work as a civil rights attorney. So I’ve seen not only the way that it’s provided opportunities for me in prohibiting discrimination in state and local governments, but in the way that it works for other people as well. And I think especially the anti-discrimination mandate within Title II, specifically when we talk about Olmsted and the right of people with disabilities to live in community and not be institutionalized. I think that’s a particularly important provision for me and for people with disabilities in general.
Celeste Headlee: So it was July 26th, 1990, when President George H. W. Bush signed the Americans with Disabilities Act into law. Let’s take a listen to just a portion of what he said at that signing ceremony.
Clip: With today’s signing of the landmark Americans [with] Disabilities Act, every man, woman and child with a disability can now pass through once-closed doors into a bright new era of equality, independence and freedom. And as I look around at all these joyous faces, I remember clearly how many years of dedicated commitment have gone into making this historic new civil rights act a reality. It’s been the work of a true coalition — a strong and inspiring coalition of people who have shared both a dream and a passionate determination to make that dream come true.
Celeste Headlee: Judy, at that point, you’d already been a disability rights activist for 20 years or so. What was that moment like for you?
Judy Heumann: Well, the signing of the ADA was obviously quite historic because, as President Bush was saying, this was the result of a coalition and it was a coalition that first really began with the disability community. Because there’s so many different types of disabilities and previously, different communities were not necessarily working together. So one of the big feats for the Americans with Disabilities Act was to get people with the different physical disability communities, the deaf and hard of hearing, blind and low vision, intellectual disabilities, people with mental health disabilities, across the board who were able to come together to fight for this piece of legislation, acknowledging that discrimination existed across the United States. It was very important to be able to get senators and members of the House of Representatives to understand that the discrimination did not occur once in a while. It occurred across the board in every state, in a variety of areas, which the ADA is addressing. One of the very important parts of the ADA also was the coalition from civil rights groups and others who had not worked in the area of disability before. So bringing this broadened coalition, including labor unions, the religious community, et cetera, also, um, enabled congressional people to see that this was not an issue that was just important to the disability community, but it was one that the society overall saw. And let me just say one other quick point. I mentioned something called Section 504. Um, so those of you who’ve seen the film “Crip Camp” (you’ll see it’s on Netflix), you’ll see that there’s a focus on the 504 demonstrations. 504 is a provision of law that came about in 1973, which prohibited discrimination against someone with a disability, if the, if the entity received money from the federal government. It was then the Americans with Disabilities Act that broadened this, so it brought in the public sector. And that I think is critical for people to understand.
Celeste Headlee: That is Judy Heumann, a former special advisor for international disability rights at the State Department under President Obama and, uh, the Obama’s production company helped to make “Crip Camp,” uh, possible. Um, we’re also joined by Alice Wong, the creator of the Disability Visibility project and civil rights attorney, Britney Wilson. We will continue this conversation about the 30th anniversary of the Americans with [Disabilities] Act. I’m Celeste Headlee. You’re listening to 1A from WAMU and NPR.
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Celeste Headlee: This is 1A, I’m Celeste Headlee. We’re talking about the disability rights movement. And so many of you have stories of your own to share. Jean has a couple of suggestions. Jean is a member of the 1A Text Club and says “Two issues. Number one, doors on all bathroom stalls should open outwards. Just move the existing hinges. Simple. Number two, carpeting is brutal on wheelchair users and their attending caregivers. It takes much more strength to move a wheelchair on carpeting then on hard surfaces.” And then Nadia from San Pablo, California [commented] this: “I’m blind, and now because of the ADA, I can have the freedom to work and gain independence and employment, but I’ve been told off and on that bad management is still management. And I feel like the ADA needs to enforce better management and not just uphold the bare minimum of ADA compliance.” We’d love to hear your stories as well, participate in this conversation with us. Find us on Facebook or email us, 1A at wamu dot org. We’re joined by civil rights attorney Britney Wilson. Also Alice Wong, the creator of the Disability Visibility Project, and Judy Heumann, a former special advisor for international disability rights at the, the State Department under President Obama. And we also want to extend a very special welcome to a new and completely fabulous member of the 1A family. We are thrilled to now be heard in and around Austin on KUT 90.5. That’s Austin’s NPR station. We’re so glad to have you with us. Let’s continue this conversation. And I wanted to put, Alice, this comment from a listener to you. Bob from Texas commented, “The ADA leads us to believe that access in all areas, including voting, is very important. Not only is there access to the polls itself, but access to the voting machines and access to mail-in ballots. People with sensory disabilities have difficulty navigating a mail-in ballot independently. So as we celebrate the 30th anniversary, let’s remember about the disability vote.” Do you think that the vote, that voting is one area where we, the ADA has not, did not go far enough?
Alice Wong: Well, I think that, uh, we’ve been seeing in a lot of different states, there’s a lot of voter suppression, voter ID laws that are happening locally that truly do impact older disabled people, Black or brown communities. It just tends to make voting more difficult. So yeah, there are a number of access barriers. And, you know, with the coronavirus, with the push toward vote by mail, there are a lot of people who still cannot be casting independent and private ballots by mail. So while voting by mail sounds like something that must be done, I think it should also be done with thinking about access because there’s still a lot of people. Everybody deserves the right to independently, and privately, vote the way they want. And even with all the, uh, you know, kind of different devices and assistance that happens in the actual polling station, there are quite a few reports of just, you know, straight-up lack of assistance, lacking of training, lack of knowledge, accessible voting machines that don’t work. And disabled voters who go to their local polling place end up being at one where that’s not accessible. So there’s still a lot of persistent systemic issues that need to be addressed.
Celeste Headlee: So Britney, I also want to get your response to this comment from James in North Carolina, who says, “I am 100 percent disabled due to my military service. And while I greatly appreciate the Americans with Disabilities Act, in no way do I, or most of my disabled colleagues, expect the world to change the way they do business in order to accommodate us. It’s nice when it happens, however we don’t expect it.” What would your response be to that Britney?
Britney Wilson: We should always expect the world to change. I think one of the great things about disability rights is the notion of accommodation, as opposed to just equality. Um, equality presumes that justice is achieved when you treat everyone the same. And disability shows that sometimes that’s not possible. That giving everyone the same thing does not put everyone on an equal playing field because some people need more than others. Some people need more specific things. Some people need less specific things. So the notion of accommodation, which is central to disability rights and the disability rights movement, assumes in itself that society should change and that we should expect society to adjust according to the needs of all of its members. So while I can understand the sentiment that society won’t change, or that we shouldn’t expect it to, or that we shouldn’t expect the ADA to solve all of our problems — it doesn’t — it’s upon, it’s incumbent upon us to continue to push for society to accommodate us and to include us.
Celeste Headlee: Um, we’re working on Alice Wong’s line to make it easier to understand what she’s saying. And, and she’ll be back in just a moment. In the meantime, Judy, I wanted to play you this comment from another one of our listeners about the ADA.
Clip: Hello, my name is Lisa and I live in Boulder, and I have an invisible disability. I have Lyme disease. And my husband has a visible disability. He has muscular dystrophy and uses a walker and a wheelchair. And we have found living in Boulder very difficult for people with disabilities because accessibility is very limited, from parking to awareness with laws, people out and about unable to access basic accommodations, basic services like pumping gas and things like that. So it’d be wonderful to see a larger awareness of ADA in Colorado.
Celeste Headlee: And Judy, that goes along with this comment from a listener who uses the handle Cobra Donkey, who says, “Very little progress has been made under the ADA for persons with psychiatric disabilities. Stigma about mental illness makes it fraught to ask for reasonable accommodations. Many employers don’t believe you have an illness.” What progress still needs to be made for so-called invisible disabilities?
Judy Heumann: So I think a lot of these comments have been very important. Laws will not change people’s views. Laws like the ADA make it illegal to discriminate, which is very important, allows people to file complaints, go to court, gets the government involved in technical assistance to help people learn about what laws do and don’t do. But at the end of the day, I think just like when we’re talking about the Black Lives Matter movement, we’re talking about very significant biases towards people who have differences. In the United States, like the rest of the world, our media coverage has been really very bad to really help the American public and the world at large have a better understanding of who we are with visible and invisible disabilities and to portray positive images of who we are, how we want to contribute, how we are contributing and the barriers that are preventing us from doing this. So for a couple of the people who’ve called in, I think exactly as Britney said, people should have an expectation that things will change. Obviously, I think it’s not a realistic expectation to think that things will change tomorrow, but I do believe that it’s very important. Like with the last listener, Lisa, talking about the issues that people with psychiatric disabilities, that we all need to be speaking up and speaking out. We need to be looking at a changing world more from what we might call a universally-designed approach so that people who don’t have disabilities today but know people who do have disabilities are also preparing for their future. And in part that’s what the ADA and other laws are doing by changing the built environment, by changing requirements around accessibility and technology. Things are becoming more built into the environment, so that changes like curb cuts and requirements of accessible buses and elevators and trains. People don’t even know that there was a time when that didn’t happen. If I could just really quickly say something on voting. Voting, as Alice said, obviously is a right and the National Federation of the Blind is an organization that has been doing a lot of litigation against states that have been trying to prevent blind people from voting online. There have been a number of cases that have been settled in favor of what the National Federation of the Blind is trying to do. The Justice Department is doing monitoring, and as Alice was saying also, the reports that are coming out talking about the extensiveness of the problems need to be addressed. And so I think enforcement is something that’s very critical and the disabled community ourselves and allies need to be much more public and out there about why we have the right to vote demanding that errors that we can see that are happening across the United States are addressed before the next major election in November.
Celeste Headlee: I want to talk then about places that the ADA couldn’t fix — problems it could not fix. I mean, first of all, there’s the issue that many people have forgotten how different it was before it was signed into law in 1990. Disabled people had a very tough time using public transportation or even private transportation. Often couldn’t even check things out of a library, couldn’t go to the beach, couldn’t go to movies or concerts, couldn’t get insurance. So many things changed. And yet we have this email from Dessa who says, “As a disabled person and a disability activist, it’s been my experience that many non-disabled people think that because we have civil rights protections, things are fine for us. These laws are hugely important, but we need more people with disabilities in positions of power, inclusion and disability in DEI efforts, and a culture shift. Disability is not a deficit.” I wondered if you could address this for us, Britney. Is there a delusion, I guess, that the ADA solved all of this for disabled people?
Britney Wilson: If there’s a delusion, I don’t think it exists among people with disabilities. I think most people, especially members of marginalized communities recognize that the law in and of itself doesn’t change society. The ADA doesn’t fix the problem of ableism. It could never do that on its own. Rights and laws are always meant to be a floor and not a ceiling, so the ADA requires enforcement. There are many areas where we have the right, but it’s not being carried out according to the law. You mentioned public transportation. In New York City where I’m from and where I live, something like less than a quarter of the transit system is actually accessible to people with disabilities. And when you ask about that, the response is always, “Oh, the system is old.” But we know for a fact that even where renovations are made and the law requires that when renovations are made, that a station be made to be accessible, they’re still not being made to be accessible. So we know that we have rights, but the enforcement of rights is another thing and tackling ableism as a societal problem is another issue in and of itself. And the ADA alone could never change attitudes towards people with disabilities. There are a lot more things that are going to be needed in tandem to address those issues.
Celeste Headlee: Judy, let’s take a listen to another comment from a listener who’s talking about this idea between changing social attitudes.
Clip: I’m dyslexic. I was one of the first children diagnosed with a learning disability back in the early ’60s. My childhood was hell. I struggled, nobody knew what it was and I dealt with people who knew that if I really tried, I could do all the things I couldn’t do. My friend’s daughter was born in 1992, two years after the Americans with Disabilities Act. She wasn’t diagnosed until she was 16. Meanwhile she struggled and her young childhood was hell, and she dealt with people who told her that if she really tried, she could do all the things she can’t do. It hasn’t changed. People need to know that.
Celeste Headlee: So Judy, where do you fall on this question of, over changing the law versus changing society’s view?
Judy Heumann: Well, I think there’s also a third part and that is enforcing the law. So in the case of what the last speaker was discussing, actually Section 504 that I mentioned earlier covers public schools and all primary secondary education, and the Individuals with Disabilities Education Act is another critical piece of legislation that every state is required to comply with. What is being discussed right now are children that are not being identified appropriately and are not getting the services they need. That doesn’t necessarily mean we need a change in the law. It does mean that we need more effective enforcement, more effective technical assistance. So that teachers and others are being taught more about what dyslexia and other learning disabilities are. As a former school teacher and as a former assistant secretary in the Clinton administration, education, I see that as one of the big issues. Many of the points that are being addressed here are covered by existing laws. Because something is in a law doesn’t mean that it’s enforced. Parents need to know more about what their rights are. It needs to be a more collaborative process between schools and families. So if a child is having difficulty reading, it may not be because they have a disability, but it might be. But we need to be doing a much better job in helping children who are having difficulty learning to read for a variety of reasons, learning how to read, so that they’re not going through the struggles that the previous speaker was discussing. Everything is not fixed with a change of a law. Much is fixed with the laws that we have in disability by stronger enforcement and by greater knowledge being imparted to communities — so people understand what their rights are and getting the support that they need to implement their rights.
Celeste Headlee: These are all really, really important points. We got a tweet from Castle Shipper who says, “All Americans owe a huge debt of gratitude to former PA governor Dick Thornburgh, who as attorney general issued ADA compliance regulations and documents in record time, opening the way for implementation and enforcement of the ADA.” And we can talk more about what it takes to convince policy makers to make those kinds of changes. But I wonder if you could give us, quickly, Judy, a glimpse into what that’s like… the argument that you must’ve had to make to politicians. We only have about a minute, but I’ve wondered if you could just let us know how you make that argument.
Judy Heumann: The argument about regulations is very important, because regulations enable people to get greater clarification on what a law is intended to do. This is not disability-specific. All of the laws in the United States basically come out with regulations. Why it was so effective with the Americans with Disabilities Act is the attorney general Thornburgh had a son with a disability. He also had a lead person named John Wodatch who had worked on Section 504 and all the way through with the lead, with the Justice Department, on the ADA. So they were ready as the law was being developed to have the regulations in place so they could be quickly put forward. Part of the issue there was great knowledge on the part of staff, federal employees.
Celeste Headlee: And we’ll talk more about this. We are speaking with Judy Heumann and Britney Wilson. I want to say thank you to Alice Wong for joining our conversation. We were unable to get her line clear so that what she was saying was able to be understood over the radio, but we really value her input. I highly suggest you can check out a piece that she wrote for Vox back in April, writing about how it felt to be, to feel expendable during the pandemic. We’re talking about the 30th anniversary of the Americans with Disabilities Act. More from our guests and from you in just a moment.
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Celeste Headlee: Back now to our conversation about the disability rights movement. And we’re joined by civil rights lawyer Britney Wilson, and Judy Heumann, a former special advisor for international disability rights at the State Department under President Obama. Britney, let’s talk a little bit of the pandemic. I mentioned that Alice had written a piece for Vox in which she said she felt expendable during this pandemic, uh, because she needs a ventilator to live. And we also found that states, some states —Washington, Alabama, Tennessee — they created disaster preparedness plans that explicitly said people with cognitive issues were at a lower priority for life-saving treatment. And that was, uh, challenged by civil rights complaints. But we also got this comment from a listener with a disability about navigating the, uh, the COVID-19 pandemic.
Clip: Hi, this is Andrea calling from Exeter, New Hampshire. I’m calling about the impact of the pandemic on the 38 million people in the U.S. with hearing loss. The pandemic has really exacerbated our isolation. We’ve already been isolated. But now with face masks, we have muffled speech and I can’t read lips anymore. We have social distancing. It’s incredibly hard for me to communicate with anybody. At the hospital, I’m terrified. I can’t bring my husband in to help me hear people. There’ll be noisy machines beeping. I’m told to bring my own speech-to-text apps and a sign to hang over my bed and something to put my hearing aids in so they don’t get lost. Hospitals are not really set up well to accommodate people with disabilities, and we need to raise awareness about the difficulties for people with hearing loss and meet their needs better.
Celeste Headlee: Britney, what kind of extra challenges are disabled people facing during this pandemic?
Britney Wilson: So the disabled community faces challenges in the health care around outside of COVID. And I think COVID has just exacerbated all of those issues. Um, when we first started hearing about COVID-19, it was framed as something that was especially dangerous for people with quote unquote underlying conditions. Now we’re seeing that, across the country, more than a dozen complaints have been filed with the office of civil rights at the Department of Health and Human Services for medical rationing plans that exist in states that say, if you are disabled and you seek medical care during this crisis, we can rank you lower on the list of who’s able to access a ventilator, or who’s able to access certain health services. We can de-prioritize you based on what we think your quality of life is, or, or how likely we think you are to survive based on stereotypes about your condition or your disability. So you have people with disabilities first being afraid of the virus in and of itself, or being sometimes extra susceptible to the virus. And then they have to worry about what happens when we seek health care. Are we going to be deprioritized? Is someone going to think that our lives are worth living because of our disability? So the pandemic has exacerbated all of the problems in health care that people with disabilities already face not to mention, uh, the crisis that’s happening in nursing homes. And COVID right now, we’re seeing what happens when we, uh, lock away people with disabilities and what we, what happened to the people in the most vulnerable state. We know that homes for people with intellectual disabilities, those workers weren’t given the proper PPE. Um, people with intellectual disabilities themselves weren’t given the proper PPE. We know that home care workers haven’t been given the proper PPE. So, so many steps have been taken that ignored the needs of people with disabilities during this pandemic that have put us at risk in multiple ways.
Celeste Headlee: And another thing that we have seen Judy, uh, during this particular time is people selling something called mask exemption cards. These cards site the ADA, and say the individual is not required to disclose the medical condition, but it means they don’t have to wear a mask. I should say, clearly, those cards are, are fraudulent, but what is your reaction to something like that… When someone is using the ADA for that kind of thing?
Judy Heumann: You know, I want to really thank Britney for her excellent comment, uh, in response to the previous speaker. And it does relate to this situation also. So, um, definitely there are people who fraudulently use, like, parking permits. Uh, we see this around the United States where there’s a placard for a disabled person to be able to park in certain places and people use them who don’t have disabilities. So this is an ongoing issue. Um, it’s not significant in numbers, but it’s a problem. On the issue of masks, if people have a question about this, including business owners, you should call the Department of Justice because they’re addressing this. Um, I would say that absolutely, um, not wearing a mask is something that you should not allow people to do. As someone who’s 72 years old, who had polio and is impacted by breathing difficulties, I don’t want to see people in stores who are not wearing masks. Um, if there’s a legitimate reason that they can’t wear a mask, in my personal view, it means that there should be something that should be done with the person who’s managing the business so that they can provide the individual with what they need without them having to come into the store. That is something that can be done under the Americans with Disabilities Act and under Section 504. So, um, even with a legitimate disability, that doesn’t mean that de facto, you can go into a store without a mask on.
Celeste Headlee: We got a tweet from Joshua who says, “I’m a digital disability advocate working in higher ed. I’ve worked on the front lines of responding to a lawsuit. And it was the best part of my career knowing people were finally waking up to inclusive technology practices.” And then this text from a listener in Pittsburgh who says, “I have an invisible disability, spinal stenosis, and can only walk because of an implanted electronic device. I’m happy to have a position in my chosen field, I’m productive and make a positive impact on our team. However, I’m under-employed. My job pays 12 an hour for 29 hours per week, not a livable wage and no benefits.” Britney, since we’re still talking about COVID-19 here, I wanted to talk about intersectionality because one of the things that we have seen during this pandemic is especially for disabled people who are of color, we know that not only as you’ve mentioned, is health care more difficult for someone who is living with a disability, but also Black Americans are dying from COVID-19 at more than three times the rate of white Americans. Um, and, and so maybe you could address for us this idea of the places in which civil rights fights, um, and discrimination and lack of equality intersect.
Britney Wilson: Definitely. Um, I’m a Black disabled woman. So as you said, um, when when we talk about disability rights, for each of the advancements that we’re saying the disability rights movement and the ADA brought about, um, the studies show that people of color with disabilities, um, lag behind in each of those advancements. And we know that that’s because of the compounded effect of not only ableism, but ableism and racism. Um, if we just take the instance of, you mentioned COVID, which we know disproportionately affects people of color and people with disabilities, the nursing home, um, crisis. There was an article in The New York Times that said even in, even amongst the crisis in nursing homes, nursing homes that served, uh, people of color, Black and brown people, the crisis was even worse. The people of color within nursing homes were more likely to contract COVID and to die from it. So that shows that even, even as the crisis disproportionately affects people with disabilities and disproportionately affects people of color with disabilities. Um, similarly in, in this moment that we’re talking about right now, we’re talking about policing. Um, and we know that policing and police brutality, police violence, disproportionately affects people with disabilities and people of color with disabilities. Um, studies show that something between a third and half of all people killed by police are people with disabilities killed by police. And we know that some of the same stereotypes that apply to people with disabilities in terms of criminality, um, and, um, suspiciousness are also applied to people with disabilities. There’ve been a lot of conversations around the mental health around and removing police from interactions with people with mental disabilities. But those stereotypes of race and disability applied to people with all types of disabilities as well, because we know the police often respond to quote unquote behavior that they deemed suspicious and movements that they deemed to be suspicious. And those are things that are compounded when you bring in factors like racism. So all the factors that plague marginalized groups within society, people of color, people of color with disabilities, queer people with disabilities, queer people of color with disabilities, all of these issues intersect.
Celeste Headlee: Yeah. And I wonder though, Judy, if it’s possible that the pandemic may have, um, opened a few eyes. And I say that because so often people with disabilities say they have trouble getting full employment or employment at all, because they’re told they have to be physically present. And yet the pandemic has made people aware of what can be accomplished in remote work. What do you think, um, might come from so many people working from home now?
Judy Heumann: Well on the issue of people working from home. I think, um, obviously what we have seen is that previously where we had so many restrictions about people working from home, that adversely affected some disabled individuals and non-disabled people. Uh, what I want to make sure is that we don’t revert and see that, uh, and believe that all disabled people want to work from home because that’s not the case either.
Celeste Headlee: Yeah.
Judy Heumann: So I think what, what we’re learning from COVID is that some of the rigidity that we’ve had across the board needs to be relaxed. We need to look at what we’ve learned and how we can do things differently in the future. But I definitely do not want us to believe that now all disabled individuals wanna work from home and can work from home and that we don’t want to be making the accommodations that people who should be working in the office need to have made. So we have to be very careful about that.
Celeste Headlee: Let’s get to one last voicemail. And this one is from Gina in Arizona.
Clip: I have a physical disability, and I’d like to make the point that one of the things that I think folks don’t take into consideration, and one of the things that the ADA doesn’t necessarily address, is the fact that with a physical disability, I have to hire help for lots of things that most people take for granted doing themselves. Like, landscaping, or housekeeping or grocery delivery. Even before COVID, those were realities in my life.
Celeste Headlee: Britney, what’s your response to this? How might we change laws to take into account what Gina is talking about here?
Britney Wilson: I actually had some difficulty hearing Gina’s clip. So I’m not sure if you’re able to play it back for me?
Celeste Headlee: Let me recap what she said.
Britney Wilson: Sure.
Celeste Headlee: She said, people don’t realize that as a person living with a physical disability, she ends up having to pay more. Her life is more expensive. She has to pay people to, um, clean her house and landscape her yard and, and things that end up making things even more costly for her.
Britney Wilson: Well, absolutely. Uh, we talk a lot about the disability tax, uh, as we call it in the disabled community. Um, I think there are a lot of different ways to address this for, for people who receive, um, Medicaid, for example. There have been cuts and proposed cuts to home and community-based services, uh, services that allow people with disabilities to pay their attendants and their home care workers and the people who assist them with their daily lives. So, so one change legislatively that needs to be made is is more funding for aides and home and community-based services and the people who help people with disabilities to live our daily lives. Uh, also we need to think about the cost of things like transportation. I think when we, when we address issues of public transportation not being accessible, that’s something that a lot of people with physical disabilities tend to pay extra for. Um, you know, because the New York City subway system is not accessible, for example, um, [we] spend more money in taxis or Ubers and things of that nature. So these are added costs to being disabled, um, that aren’t always factored into. So if we address some of these issues that we’re already tackling, uh, like transportation, like funding for home and community based services and, and attendance and health care, uh, that cost will hopefully not have to be added to the burden that people with disabilities already face.
Celeste Headlee: So a number of people, um, are concerned about Alice Wong. I just want to say she is still very much commenting on the things that she wanted to talk about, uh, especially in relation to voting rights for people with disabilities. Um, Alice Wong has a lot to say, uh, and so we value her input, but again, I highly advise you read some of her great writing that she’s had, and she is, she has a lot to say about voting access and access in other ways. But I, I do want to put to both of you this question that comes from one of our listeners who says, “Great conversation on the ADA. I’m curious to hear what these women would want changed in a future health care reform effort, especially as Congress debates expanding the ACA, the Care Act. And let me put that to you, Judy, what kind of changes might you want to see?
Judy Heumann: I want to see that everyone has health care. That’s the most important thing, that there are no people in the United States who are being denied health care. I’d like to see better coverage of things like hearing aids and durable medical equipment: wheelchairs, crutches, things of the like, um, because frequently it’s very difficult to get those items covered or to get them covered appropriately to meet the needs of people. But the most, most important issue is that the millions and millions of people who are currently uncovered and millions of others who are being thrown off their insurance because of COVID and businesses no longer providing health insurance. That has to change.
Celeste Headlee: I want to give the last word to Alice here, who says, “Eugenics and ableism is a huge issue. In Texas, a black disabled man named Michael Hickson died six days after doctors withdrew, nutrition and hydration because he had coronavirus and his doctor didn’t believe he had enough quality of life. This is a very real fear disabled people have with the medical industrial complex: that we’re not seen as we really are or valued. I also want to see disabled people receive whatever they need that allows them to be fully integrated and engaged with society. That’s the dream for me.” That’s Alice Wong, creator of the Disability Visibility Project. Also many thanks to Judy Heumann, former special advisor for international disability rights author of a new memoir called “Being Heumann: An Unrepentant Memoir of a Disability Rights Activist,” and Britney Wilson, civil rights lawyer at the National Center for Law and Economic Justice. Today’s producer was Kathryn Fink. This program comes to you from WAMU part of American University in Washington, distributed by NPR. I’m Celeste Headlee. Thank you so much for listening. This is 1A.
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