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Weeds Time Machine: The ADA


Dylan Matthews, Dara Lind, and special guest Ari Ne’eman (@aneeman) fire up the Weeds Time Machine for a special episode on the Americans with Disabilities Act. The ADA was signed into law 32 years ago today, and while the legislation had a profound impact on almost every corner of American society, the bill wasn’t perfect. So hop into the Time Machine to learn about the history of the disability rights movement, how the ADA came to be, and what the movement is working toward today.


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Episode transcript


Dylan Matthews (@dylanmatt), senior correspondent, Vox

Dara Lind (@dlind), Weeds co-host, Vox


Sofi LaLonde, producer and engineer

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This is an unofficial transcript meant for reference. Accuracy is not guaranteed.
- Support for this podcast comes from Planned Parenthood. It's hard to imagine a world where we leave future generations with fewer rights and freedoms. Since the Supreme Court's decision to overturn Roe v. Wade, politicians in nearly every state have introduced bills aimed at blocking people from getting the essential sexual and reproductive care they need, including abortion. Planned Parenthood believes everyone deserves access to care and with supporters like you, they can reclaim our rights and protect and expand access to abortion care. Visit plannedparanhood.org/future to learn more and support their cause. Book flights and hotels. All you're missing is a tool to help you plan that unbelievable travel experience. That's why you need Viator.
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We did it! There have been a few special moments in American history where real progress was achieved toward equality and protecting civil rights. Welcome to every one of you out there in this splendid scene of hope spread across the south lawn of the White House. The Americans with Disabilities Act was one of those moments. With today's signing of the landmark Americans for Disabilities Act. 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. -It was a piece of bipartisan legislation that was pushed up an immensely steep hill by activists and advocates for years.
Provide our disabled community with a powerful expansion of protections and then basic civil rights. It will guarantee fair and just access to the fruits of American life, which we all Must be able to enjoy. Into the Berlin Wall coming down. Hammer to another wall. I now lift my pen to sign this Americans with Disability Act and say let the shame - painful wall of exclusion finally come tumbling down. Bless you all.
The ADA is a significant piece of civil rights legislation that has profoundly changed the way American society operates. But the fight for the rights of Americans with Abilities started long before the bill was signed into law. And we're going to... Take a look at that history today on the actual anniversary of the ADA, because while this was momentous legislation, it wasn't perfect. We still have a lot of work to do to bring equity to the millions of Americans living with disabilities. Very own Darlin. Hello! And today's special...
Guest Ari Neiman. Hello. Ari is a PhD candidate in health policy at Harvard. He's worked in disability rights advocacy for over 15 years. He co-founded the Autistic Self Advocacy Network in 2006. And in 2009 he was appointed by President Obama to the National Council on Disability. Needed more proof that Ari is the perfect guest for today, he is also writing a book on the history of American disability advocacy. He is also Full disclosure has been a personal friend of mine for over a decade, so I'm thrilled to finally have him here. Welcome to the weeds and to the time machine. - Well, thank you for having me. We'll try to keep the throttle. Study. Sounds good. So first step in any time a Shadym visit is deciding where to where to start our journey. So if you're telling the story of the origins of the American disability rights movement and and the events that led to the Americans with Disabilities Act
Where would you start telling that story? If we look at the early 20th century in the United States, we begin to see... Some really concerning things happen to people with disabilities. In the first half... The 20th century a broad and powerful social movement that sought to Breed better human beings in much the same way one might try to breed better horses or better dogs. Really held a great... Deal of power in America. And as you know, the name of that social movement was eugenics. You are likely familiar with the role that eugenics played in imposing many of America's race and ethnicity. Based immigration restrictions, the role that eugenic thought played in a wide variety of aspects of the history of America.
Racism, and you may also be familiar of course with eugenicists having played a role in involuntarily sterilizing tens of thousands of people with disabilities. What many people are less familiar with is institutionalization of people with disabilities, in particular people with intellectual disabilities and persons with mental health. Illness skyrocketed in the first half of the 20th century. And this was very explicitly with an eye towards not protecting disabled people from society, but instead protecting society from disabled people. And so of course it's not a. Surprised that all manner of different aspects of American society are built with an expectation that disabled people will be somewhere else, someplace separate.
Prior to the passage of the Education for All Handicapped Children Act in 1975, US public schools educated only one in five children with disabilities. And many state public education laws explicitly excluded people with many specific disability categories from receiving a public education. And of course, unsurprisingly, many parts of our built environment that we really take...
Granted today, like curb cuts on sidewalks or captions on television, didn't exist. They're recent innovations won by the disability rights movement. So all of this really, really came together to spark this desire by people with disabilities to take control of our own lives and to change the way that society approached us. that history really shows up really beginning in the mid 20th century, culminating in the ADA and of course the ongoing work of the modern disability rights movement. When we talk about the disability rights movement, what are we actually saying? How did that kind of sense of group identity, in addition to the idea of self-advocacy, come together?
Well, it's a relatively recent development. Militant disability activism actually has a quite long history. In the deaf community, really, even in the late 19th century. You begin to see it in the blind. Community in the 1930s and 40s. You begin to see it in the context of physical disability in the 1950s, but there are two big differences, I would say, from what we call modern disability activism. One is it's not modeled after civil rights, it's modeled after, by and large, the American labor movement, which is really, you know, the dominant example in the public's mind. Of how you undertake militant advocacy towards a collective goal. But in addition to, you know,
really seeing the labor movement as the natural place to go, a lot of these organizations would have been, and in some cases were, very afraid of any analogy to civil rights in the 1940s and 50s, a time when civil rights were Were deeply unpopular when many of the disability organizations in question actually were segregated on the basis of race, particularly in their southern chapters. And when even where they weren't, they were very afraid of the idea of being tarred as Associated with something that was still very much outside of the American mainstream. Starts to change in the 1960s and 70s. First you...
Begin to see a lot of interest on the part of disability activists in imitating the successes of the civil rights movement. You know, now we're past Brown v. Board, we're past the Civil Rights Act of 1964. For all of a sudden civil rights, which previously was something that folks were just very Very antsy about associating themselves with is now an organizing model that's been proven as very successful. So you do see, in some instances opportunistically, in other instances with a younger generation that actually does really believe these things. In their bones and tries to build a much more multiracial movement with varying degrees of success, a shift towards a civil rights oriented model of disability activism.
But the other thing that you see, and this is just huge because there's very little precedent for it, is you start to see the creation of disability as a coalition. And it is in many ways an uneasy marriage and in some ways an uneasy marriage. Ways very similar to the broad coalitions that have been created today around concepts like LGBTQ. Or people of color, you have very different groups that feel they have some common thread in their experiences with the broader society and try to come together and organize. And that is something very different from what came before. If you look at early 20th century or mid-20th century disability activism...
Groups are very uncomfortable with the idea of associating even with very similar disability categories. In 1935, when the Social Security Act was passed, and it included within it cash assistance for the blind, who were the first group to win cash assistance from the federal government among civilians with disabilities. You first see that applied to a very specific diagnosis, not broadly, but second, even some of the groups that are left out sort of don't see it as applying for them. The National Association of the Deaf tells their members that they should be proud that Congress... Not see them as akin to quote widows, orphans, and the blind and that quote we are regarded as normal human beings by Congress and our chief executive.
And so kind of the broad coalition doesn't come together until the 1970s. And I would say part of the reason it finally happened. Is there is a recognition that you don't win broad civil rights protections in the absence of a broader coalition. You can get money, you can get services oriented around a particular diagnosis, but you know, you're not... Going to get the deaf civil rights law. You're not going to get the kidney. Disorder specific employment non-discrimination protections. It only happens when you see groups come together and all of them have something to give, right? folks really slowly over the course of the 70s and 80s come together and
Somewhat as a matter of principle, somewhat opportunistically say, Hang on, we have this thing in common. Let's build this broader big tent coalition. What did that mean for some of the groups that had been more sort of successful in their aims before the creation of a broad popular front of people of various disabilities? It obviously seems like a good thing for like very stigmatized disabilities and intellectual disabilities. Disabilities, the National Federation of the Blind and others, or blind advocacy groups, Like, I'm reminded every time I do my taxes that there's a bigger standard deduction if you are legally blind. There's a lot of like specific carve-outs for blindness as a disability as opposed to other disabilities. How do you get groups like that for which the old approach seemed to be working on board with... A broad front. It's very tricky and there are a lot of hiccups. So NFB I think is a great example. They're very important.
Organization to the disability rights movement today and historically. And they really emerge in the 1940s, in the aftermath of the creation of Social Security, because The federal government, having created Social Security and provided cash ass... In a state federal partnership with a number of states who had already had state laws providing cash assistance to the blind starts to impose its own rules. And a lot of those rules really means test these programs much more aggressively. So blind activists who had built a pre-existing structure of cash assistance out in the states now set out to defend it. Against the encroachments of the Social Security Board, and they really built some extraordinary advocacy and capacity to do so. Now, when the--
When Seventies comes along, it's become very tricky as to how much of that they want to share and how much they want to participate in this broader cross-disability coalition. Who was one of the major figures in the independent living movement and was appointed by Governor Jerry Brown in his first go-around as governor of California to be director of the state's vocational rehabilitation program. Ed Roberts is a fascinating figure. He had been... He seemed too disabled to work by the state's VR program. Later, he ended up running the state's VR program. Really, just an incredibly charismatic guy who brought together the independent living movement, the number of other people.
Effectively, but he really tries in that role to take a cross-disability approach. And so there's pushback from blind and deaf groups who are concerned that this is going to lead to encroachment on long-established programs focused around their particular needs. So there's a process of trust building. And even into the point at which the ADA passes, and everyone is pretty much on board with idea of wanting the Americans with Disabilities Act to pass. Civil rights law applies to everyone, that trust building is still going on. And every group really comes to the table with a A desire to ensure that in building something new, they don't lose the things that they had created before. - You mentioned in passing.
The existence of disability state assistance programs and commissions and something that I'm always interested in when we get into the time machine to talk about federal laws is the federalist relationship between In state and federal governments in terms of who is responsible for providing assistance and you know what the best kind of venue is. Or a coalition to get its priorities done. And it's striking to me that you don't have, no one's pushing for California to pass. A model ADA. There is a lot of emphasis on the federal government as the guarantor of preventer of discrimination here. Like, what was the decision that led the movement On the federal government and what was the status of legal protection, both federal and state, prior to the ADA.
So, there are a number of state disability rights laws that precede the ADA and precede Section 504, the ADA's predecessor. You do see a number of state laws. They're of varying degrees of strength, but it was not the case that the federal legal-- protections were really, you know, the start of everything and that prior to the ADA and 504 you had nothing. Now, I do think if I may be so bold as to bring the time machine up to the near future, that may be A question that may come up again. You know, I thought it was very interesting. You know, New York State just initiated a process of putting in place a constitutional amendment to protect abortion rights. And as part of the text of that amendment, they have some generic language regarding civil rights protections to a variety of protected classes and disability
the Supreme Court. Disability, you may see more interest, similarly I'm interested in seeing more interest in some of the things we've won over the course of the last 50 years codified in state constitutions, operating under the assumption that we may not be able to count on the Supreme Court to continue to protect those rights in the future. So you have this pivot from single disability advocacy to disability as a whole advocate. Advocacy, you have these new sort of civil rights inspired groups coming along. There's a fight over something called Section 504 that's really important to the formation of the disability rights movement. Walk us through that history a little bit. What was Section 504? What was it a section of?
And, uh, and sort of why did the protests around it wind up mattering so much? So... Congress in 1973 passed the reauthorization of a relatively old law, actually dates back to shortly after World War I, authorizing... Employment services, vocational rehabilitation to people with disabilities. The 1973 Rehabilitation Act was relatively straightforward reauthorization, except that in part because there was this growing interest. In the country and civil rights, a provision was incorporated entitled Section 504, guaranteeing Non-discrimination and reasonable accommodation. Crucially, it's not just that you can't discriminate, you also have to make adjustments in programs.
Or services or activities to allow for equal access for people with disabilities. And this applies to the federal government and to any entity that receives funding. From the federal government. So this is hugely, hugely important. And you would think when Congress is passing this that the focus of controversy is going to be on Section 504. The Rehabilitation Act reauthorization of 1973 is vetoed twice by the Nixon administration, largely over questions of funding. Levels. And so, you know, the Rehab Act actually is a source of argument, you know, activists who also played a huge role in what was to come, and really the building of the modern disability rights movement. She's still at it today. It's blocked traffic on Fifth Avenue in New York and protests the
Nixon campaigns re-election headquarters and so on. But again, the focus of that debate is not on this hugely impactful civil rights law. It's about funding levels. People don't really realize how big a deal this could be. So the law does pass, and only after passage does there start to be a recognition, both on the part of disability activists and on the part of regulated entities, that hang on, this little... Thing called Section 504, that could be a really big deal. That could change a whole lot. And of course, if you're a regulated entity, you say that could.
Force us to do a whole lot of things. And so you begin to see some pretty aggressive pushback and it persists into the Carter administration. And so by 1977, Carter administration, which people forget, Jimmy Carter was actually pretty cautious. Somewhat conservative in the regulatory state as president, has still not issued the 504 regulations. And is still unsure of how they're going to look when they are issued. And so now disability activists realizing the full potential of 504, which remember if you're covering any entity that receives federal funding, covers every hospital, every public school, every university. They all can't discriminate. They all have to make reasonable accommodations. Huge, huge.
Implications. Disability activists, this is now on the forefront of their agenda. Business in particular, you know, trade associations associated with hospitals and education entities and so on, are really pushing to weaken this regulation. And so... A broad coalition of disability organizations representing not just the the independent living movement, which at the time was primarily focused around physical disability, but also other parts of the coalition, you know, really come together. And in April of 1977, they do simultaneous sit-ins at federal buildings of the Department of Health, Education and welfare across the country.
In wheelchairs, with walking canes and hearing aids, storm the Regional Office of Health, Education and Welfare in San Francisco. Their demand is quite simple. Issue the 504. Regulations. We've been waiting for years. Come on already! Congress promised civil rights protections for people with disabilities. Never mind that we didn't really notice that they were doing so until afterwards, but they did make this promise, and we want to see these put into actual practice. You the rags. All the activists actually managed to hold the HEW building for a month.
The longest takeover of a federal building in American history. >> And I've just gotten word to them, these people are now locked into the building. At six o'clock, this building did close down. However, about a half hour ago, they came up with an agreement. None of these people are going to be arrested or moved out of this building. >> A lot of things go into that. I mean some of it is police and politicians don't love the optics of drag. ... wheelchair users and people with visible disabilities out. Our role... That afternoon was to ask the people in the federal bureaucracy to call Washington and For the signing of 504 as drafted. For the disabled, the signing of regulation 504 is the difference between living and existing. In addition to that, because it's...
San Francisco, you have the rallying around of lots of other civil rights groups, gay rights groups, Black Panthers. Unions, a lot of other groups really rally to put pressure on federal government to A) not arrest all these people and B) to listen to their demands. Eventually, the regulations are issued and they're relatively strong. And this moment here when disability activists forced the... The issuance of the 504 regulations is really the crucial moment when you start to see disability recognized as a civil rights issue. If you don't have 504, you don't have the ability to be recognized as a civil rights issue. Have ADA because essentially what ADA does is it takes the next step. It expands the entities that don't get federal funding as well.
But in the absence of winning that fight around 504 and winning those protections in their strongest possible form You're not gonna see the progress that eventually leads to the passage of the ADA We're gonna take a Quick break, but when we come back, we're going to talk about sort of the lead up to the ADA, its passage, and what it meant. Stay with us. Support for this show comes from Washington Wise, an original podcast from Charles Schwab. Decisions made in Washington affect your portfolio every day. But what policy changes should investors be watching? Washington Wise, an original podcast. Podcast for investors from Charles Schwab tracks the stories making news right now and breaks them down for the average investor host. Ike Townsend, Charles Schwab's managing director for legislative and regulatory affairs, takes
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When we got to sort of late 1980s, 1990, when the ADA is eventually passed. The Reagan years, the early Bush years, what's kind of the state of play going into it. Let's start with the Reagan year. Okay, so, you know, Ronald Reagan is elected and everyone is, I think, quite justifiably terrified because in the first... Few years of the Reagan administration, they do go after 504. They try and weaken those regulations again. Now, they also go after the Education for All Handicapped Children Act. They try and weaken that, which, you know, had just been won, providing the right for students with disabilities to go to public school and have access to a free and appropriate public education. Restrictive environment. Today we call it IDEA, Individuals with Disabilities Education Act. The Reagan administration goes after that, and there's reason to believe, you know, that
Remember, the Reagan administration did succeed in gutting the Community Mental Health Services Act that the Carter administration had passed only very slightly before. And that does play a role in deinstitutionalization of persons with mental illness not going as well as it otherwise could have. Reagan does do a lot of damage, but disability activists are sort of surprisingly successful at pushing back on the attack on 504 and on the attack on IDEA's predecessor law, the Education for All and Decades. Cap Children Act that spoken with Madeline will would later become the
Assistant Secretary of Special Education and Rehab Services under the Reagan administration. It's played a major role in Down syndrome advocacy over the course of many years. And she shared with me that when she first took over as Assistant Secretary of Education for Special Education, she would hear stories from the staff there about how the halls were so full of letters. Of people protesting the effort to weaken these new protections that, you know, they could barely move. Um, you know, there's just an incredible... Credible mass mobilization. You know, and some of it is people have just won these legal protections and they don't want to give it up. Some of it Is in the years leading up to this, there is some very strategic organizing. After the 504 regulations are promulgated.
In 1977, the federal government funds some disability rights groups to go from state to state to train people about what they require. And these activists are very savvy. They basically say, Okay, well, we can't do advocate. To see using federal funds. But hey, we're in Des Moines anyway. The day we'll hold the training. During the evening, we're going to have a conversation with folks about how you start your disability rights group and how you-- Build some capacity and infrastructure. And in truth, there's a long history of that. Disability advocacy to this day. So when the Reagan years come, all that advocacy is activated. And they do largely manage to save 504. They do largely manage to save the Education for All Handicapped Children Act.
There is some aggressive and quite punishing efforts by the Reagan administration to kick people off of Social Security Disability Insurance. But in part because of the backlash, Congress and the courts install some protections in SSDI, which eventually led to the expansion of the program. And perhaps most interestingly, you see, particularly when we start to get to the midpoint of the Reagan years, some collaboration between disability activists and the Reagan administration about areas of common interest. In particular, related to bioethics. There are a series of cases in the 80s called the Baby Doe cases involving the denial of... Life sustaining care to newborn infants with disabilities. The Reagan administration is interested in this from pro-life standpoint.
The disability rights community is interested in it from a civil rights discrimination standpoint. And there are some common efforts. Of varying degrees of success. You know, ultimately the courts really limited what you could do but they do win some victories to try and address-- This. And I would say, um, because of the crisis of what could be lost, the different diagnosis groups, um, start to come closer together.
Because of some of these limited areas of collaboration, the disability rights movement actually does learn to work with some Republicans. And that proves crucial when it comes to the eventual push to pass the ADA. How does that push start? Is there sort of a strategy among sort of leading groups that that's going to be the session where they're going to make a push for a big national bill? How does that get on the agenda? So there are a variety of things that happen. First, even though there are tensions, disability groups have formed some pretty close relationships with other civil rights communities, particularly through the leadership conference on civil rights and you know,
Rights groups. And they do a pretty good job socializing the idea that one of the things we need is a broader disability rights law. At the same time, you see a very concerted effort on the part of disability activists to form relationships with the broader community. Odd range of campaigns in the 1988 presidential election. Um, and it's very strategic, you know, it's sort of the idea, I'll advise this candidate, you advise that candidate, let's, you know, chat amongst themselves discreetly to see what we can get. Out of all of them. And so, you know, this really only works because all of the pieces come together at the same time. I'm through the national council. You have a clear legislative framework. You have. Relationships with the broader civil rights community, which can make this a priority across.
Liberal Washington. You have relationships with Republicans, which have been built up. Personal connections and the collaboration that took place during the Reagan years. And of course you also have a very different Republican Party. And all of those things align to make the passage of a broad disability civil rights movement. Law possible. I will say one more thing about that though. There's a great story. I think Pat Wright, the Disability Rights Education and Defense Fund was crucial in the center of the passage of this. Law tells this story. She is sitting on the South Lawn of the White House, the big signing ceremony for the passage of the the ADA, she's sitting next to Senator Ted Kennedy, who right before President Bush signs the law, leans over... And says, Uh, Pat? Yes, Senator Kennedy? What if he reads it first?
And Pat says, don't worry. He won't. And there's an element of truth there because of course, you know, the ADA had far. Broader implications than was generally realized at the time. They knew they were signing a civil rights law. They knew it was going to apply broadly. Across disabilities, they knew it would apply to employment, they knew it would apply to places of public accommodation, to state and local governments, etc. But I don't think the political leadership, particularly the more considerate... Conservative folks who ended up coming on board particularly realized the breadth of the changes that the ADA would bring about. So what does the kind of text of the legislation do?
To set up this unexpectedly radical policy regime going forward. How does the ADA work? One of the first things I would highlight. About the ADA and its predecessor law, section 504, is there is no specific list of if you have Have a condition that's on this list, you get protection. And if you don't have a condition that's on this list, you don't. The ADA's definition of disability is functional in nature. It's a person who has a physical or mental impairment that substantially limits one or more major life activities. Or a record of such an impairment, or being regarded as having such an impairment. And that's quite explicit. There is a desire to really do honor to the broad nature of the coalition.
Passes the ADA, activists really aggressively push back at efforts to try and limit the scope of that protection. In fact, during the effort to pass the ADA, there was an effort to limit those legal protections for persons with HIV/AIDS and disability rights advocacy community. And to their credit, the Bush administration actually successfully pushed back and prevented Happening. So the ADA's protections apply broadly, and they provide not just non-discrimination, but also reasonable accommodation. Accommodations. So this shows up in any number of different contexts, you know in employment, for example you might have someone who is a computer programmer. But they are hard of hearing and so they can't use the phone. They can't hop on conference calls And so you might have them ask as a reasonable accommodation
to have access to a live captioning service like CART in order to give them access to conference calls. You might have someone who is blind and asks as a accommodation to have access to a computer with screen reader software. All of these things become part of this construct of changes that provide For equal access. Now it's not open-ended, right? You know, you can't say, Well, I am applying for a job as a telemarketer and I don't want to have to use the phone. That's considered part of the basic definition of being qualified to be a telemarketer. Be a telemarketer. So in fact, the law is quite tailored in this way. It is, it is.
It's not unlimitedly radical. But it does require some very significant changes in our society. - Obviously, sort of anything that's sweeping is gonna have some kind of backlash, but the demands that this places on certain businesses to make their buildings wheelchair accessible, to add captioning for video content and other services, for hotels to have elevators that are capable of bringing people up, what does that backlash look like? How does the ADA survive that, since it seems like it's threatening a lot of really powerful and wealthy groups in the United States? Well, and also, just to piggyback on that, in any regulatory context, there's a certain Standing that there's an economy of scale, right? And so larger private sector institutions are going to have an easier time adapting to new regulatory burden than
smaller organizations that might already be kind of struggling to make ends meet. And that might also be like more sympathetic defendants in case of a pandemic. Cases where, you know, in litigation or kind of just in a political context where it's a mom and pop store owner rather than, you know, the world's biggest hospital chain. I think you're right. You know, that does play a role in the politics. Unfortunately, the people who wrote the ADA very explicitly considered that question. So one of the defenses against not granting a reasonable accommodation is this constant. Called undue burden and You know calculating what constitutes an undue burden for a given entity? Really depends on this their size and the amount of resources that they have available so not so long ago. There was
A case which a lot of people got very mad about where one of the universities in the UC system, I think it was Berkeley, yes I believe it was UC Berkeley, got sued because they were making available recordings of their classes and lectures. Broadly to the public and we're not captioning them. And this was raised as a concern under the ADA and folks said, well. You know, are we going to have to now, you know, put in place legally required captioning on anything that anyone posts on YouTube, for example.
And you know the answer is no. I mean as a matter of best practice you really should you know even if you're a single YouTuber, but the law recognizes that if you have say UC Berkeley's endowment You know it's really hard to make the case that paying for captioning is an undue burden
So there's a very big difference between say, UC Berkeley and, you know, a sole YouTuber or, you know, say Vox media and a random blogger out there, um, but when it comes to what the law requires. So there were, there, there just definitely been a tremendous amount of backlash. And I think there are two kinds that I think really, I want to highlight. One is you have businesses really objecting to the idea that they have to make accommodations and make themselves accessible in particular, because a lot of the most costly changes are in the built environment proactively, or rather than only after a.
Complaint is raised. So there are efforts to chip away at the law to basically say, Well, a business doesn't have to be accessible until a person with a disability tries and fails to access it. The response has really been, Hey, that's not how our civil rights laws work in general. And that would really create a situation where the assumption is that the world is not accessible to people with disabilities until someone knocks on the door and really... Pushes for a given change and incurs the expense of hiring a lawyer. The other area where we saw an assault on the ADA and on disability rights law that was initially successful was eventually...
Turned back was in the definition of disability. The ADA defines disability as a person who has a physical or mental impairment that substantially limits one or more major life activities. And in the 1990s and early aughts, you saw a number of very bad court opinions, which interpreted the definition of disability very narrowly. One of the things they did was they said if someone was controlling their disability effectively, they might not have... Civil rights protections anymore and this led to nonsensical situations. There was a case in In which you had a pharmacist who worked for one of the big box stores who had and he had to take a 30 minute break each day for lunch and in order to
Administer insulin in order to control his diabetes. And he was fired because of this. The employer refused to provide him with reasonable accommodations. And so he sued. And the courts ruled that he was not protected under the ADA and did not have the right to reasonable accommodation because his diabetes. Was well controlled with insulin. You had all kinds of cases like this where people who use prosthetics, people who Controlled their disability through learned behavior, through education, through all kinds of other things, were deemed as not having civil rights protections. So in 2008, Congress passed the ADA Amendments Act, which indicated that the definition of disability should be interpreted broadly, and without regard to whatever mitigating measures people were using to control it.
For all their disability. And because of the ADA Amendments Act, you-- really now see the law applied in this very broad and sweeping way. And it's been very relevant during COVID, you know, where, where you have seen people try and assert rights under the ADA in order to act. Access curbside voting. Actually, unfortunately, the Supreme Court disagreed with us there. In order to, you know, access changes in public school, in order to allow people who are immunocompromised to access education. Order to make any number of other changes, many of these people have never thought of themselves as disabled before. But because the ADA is a law that applies very broadly, they have these protections.
More break but when we come back there is still more. We're gonna talk about what the current landscape of disability policy looks like and and what the current sort of demands and fights by the disability rights movement are so Us. Coffee traffic jam, the soggy morning jog, though why is the dog taking so long? Just go already, walk. But you can unleash your ideal day with a perfect shower using Method hair care products. Designed with high quality ingredients, Method's new range of shampoos and conditioners will give your hair undeniable softness and shine. And hey, if you're a night shower kind of person, that's great too. Try Pure Peace infused with peony, rosewater, and quinoa protein. Or Simply Nourish, crafted with coconut, rice milk, and shea butter. Or Daily Zen, made with cucumber, seaweed, and green tea.
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The ADA, states had an obligation to offer people with disability services in the most integrated setting. And it was used... Successfully by two women with psychiatric and intellectual disabilities living in an institution in the state of Georgia. Argue that Georgia had an obligation to provide them with services to leave the institution and live in the community as well. So one of the things that I think is very exciting about this is Olmstead has historically been used to get people out of what we might traditionally call institutions, nursing homes, state and local institutions, and state-of-the-art institutions. Institutions, things of that nature. There is a growing interest in experimenting with, in fact-- Some cases have been brought to court on this theory. The idea that...
The unnecessary incarceration of persons with mental illness in the criminal justice system by virtue of lack of access to adequate community services might also be Basis for Olmsted litigation that you can use this legal precedent that really comes out of the ADA and has been developed and built up in the context of support for physical. Disability and developmental disability and some in the area of mental illness, but really focused around medical services and apply it to the work of criminal justice reform. Many persons with mental illness cycle in and out. Of the criminal justice system largely because of lack of access to adequate community services. so you know
If Olmstead and the ADA say that states have an obligation to provide services in the most integrated setting rather than just letting people default into a segregated setting by virtue of falling into crisis, maybe that can be applied to criminal justice reform too. And I have to say, I love that kind of cross pollination, the cross movements. There are of course massive implications for radiation. Justice as well. I just think there are some very interesting things we can do because the disability rights laws are so broad and because... Because they have fairly significant impact on welfare policy to leverage disability rights to advance the priorities of the intersection of disability. With other forms of marginalization. Another area that I think is particularly important is social security policy.
One of the big unanswered questions about the ADA is, you know, the law has really helped to To make the community more accessible. It's helped to get people out of institutions. It's helped to. Built environment, more welcoming. It does not appear to have done much with respect to increasing employment rates of people with disabilities. And so the question is why is that? And there are a variety of theories, but one of them is... We have a social security infrastructure that operates on pre-ADA and really even pre-504 assumptions about people with disabilities. Right now, SSDI, Social Security Disability Insurance, and its close cousin. SSI, Supplemental Security Income, which provide cash assistance to people with disabilities.
These programs operate on the assumption that one is either. Disabled and has no workforce participation or non-disabled and requires no assistance. And that doesn't really reflect people's lived realities. Is that in many of these laws, and SSI in particular, this is the case for... It can be very, very difficult. So SSI is the cash assistance program that most people who are born with disabilities will be on because it's for people without a prior work history. And SSI benefits phase out at $1 of lost benefits for every $2 of earnings. It's essentially a 50% marginal tax rate.
Millionaires at that level. But if you are a very low income person with a disability who is receiving cash assistance, that is the rate at which you lose benefits if you enter the workforce. In addition, SSI has an asset cap of $2,000. That asset cap, $2,000, is not indexed to inflation. Last updated in 1989. It's lost over half its value since then. We literally means test this program more. Every single year. SSI exempts the first $85 a month of someone's earnings from what gets deducted From their SSI check. Now, when that $85 a month was set in the 1970s,
was a decent amount of money. Perhaps not enough, but a decent amount of money. Again, not indexed to inflation. It is worth. Massively less than it once was. And all of this comes back to the fact that this is a program. Which serves definitionally low income people with disabilities, a group That does not necessarily have the political power that old age insurance beneficiaries have and so it's been allowed to languish. If you are a person with a disability who faces an effective 50% marginal tax rate on their income, you know, I say tax rate, it's actually... Loss of benefits, but it functions the same way as far as incentives are concerned, and you can't have... More than $2,000 of assets at any given time, that's a huge disincentive to
Now you might ask, well, you know, if the program is so bad, why do people still rely on it? And certainly the cash portion of the... Of SSI plays a role, although the cash benefits are very low. They're in fact under the federal poverty rate. SSI federal benefit rate for 2022 is $841 a month. $41 a month. But some people rely on the program for cash assistance. But much more important for many people with disabilities is access to Medicaid. On SSI get presumptive access to Medicaid in most of the country. And Medicaid is the only payer for home and community-based services, the services that for a lot of people with disabilities help people get out of bed in the morning. They help people.
People get dressed, use the bathroom. You know, these are really life or death services. There's no private insurance equivalent to this. You know, even Medicare doesn't cover it. And so you have a lot of people with disabilities who have to restrict their work effort in order to retain Medicaid eligibility. Disability. Over the years, Congress has tried to fix this, but each of these fixes have been piecemeal and they have come with a significant amount of administrative burden. So, for example, Congress passed something called the ABLE Act in 2014. The ABLE Act allows people with disabilities or Families to set up special tax advantage savings accounts modeled on 529 accounts that people use for college savings that are not subject to that $2,000 asset cap.
But you need the ability to really navigate the financial system. Often to have access to a financial planner to do this. So using an ABLE account, you can save up to a-- $100,000 without losing benefits, in many instances more than that without losing Medicaid. The most vulnerable people with disabilities who don't have family support, they don't have access to that. So we've essentially created, through the imposition of administrative burden, one system for those who can afford a benefits planner or an attorney and have access to all... Of the tricks that you can use in order to make this tenable and another system for people with disabilities who do not have access to those benefits.
Just looking forward, what makes you most optimistic about the future of the disability rights movement? - I think one of the great strengths of disability rights is that it continues to get broad. So we talked about the idea that disability activists built a law without a specific law. Specific list of who's covered and who's not, and it's proved very flexible. And we're seeing that in the modern day. We're seeing growing interest on the part of, say, people with substance use disorders and-- further use of ADA legal protections. We're seeing growing interest on the part of people with chronic pain and other chronic conditions. Making use of ADA legal protections. We're seeing discussion of using the ADA to advance.
Criminal justice reform to advance any number of broader priorities. You know, there's sort of a changing of the guard that takes place in that, right? The 1970s disability rights movement in... Sense emerged because of the polio generation. Well, you know, we don't we don't have a lot of polio anymore but The victories that that generation won Really have been passed forward to other groups of people with disabilities who have made them their own and I think we're going to continue to see that. The thing that I find particularly exciting is the idea that even as the nature of the disability is involved, change and evolve. The disability rights movement is going to continue and only get broader and more powerful and become...
A bigger and bigger part of American life. To me, that's very optimistic. I'm quite excited about it. You Thank you so much for being here, Ari Neiman and Dara Lynn, our regular co-host. Drop me off in the right location when you steer the time machine. I don't want to end up in like
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Transcript generated on 2024-05-28.