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Before we start the show, we want to give you a heads up that there are mentions of sexual assault and other heavy content in this episode.
It was 1952 and I was seven years old and I had been feeling a little bit sort of warm and feverish one afternoon, and I remember sitting on the screened in porch and explaining to my family that I just wasn't feeling well. By the next morning, my dad came in and said, Why are you still in bed? It's past the time you usually get up. And I said, I don't think I can get out of bed. Within about twenty four hours, I had been hospitalized and it was pretty clear that I had contracted the virus.
I was born in nineteen sixty five. I'm a twin and my mom knew she was having my twin. She did not know she was having. She hurt my sister at home and kind of went about her business because that's what she did back in the day and later on got sick and went back into labor and she didn't know what was happening. And so she got herself to the hospital. And I was born weighing three pounds and almost died at birth.
I spent the first few years of my life pretty much in and out of hospitals and clinics, I had eye surgery and seizures had started. And when I was real little and going to a lot of hospital stays and I would hear the doctors telling my parents to let me go. Just let her go. You've got another child. When I was born, they gave me the expectancy of four to eight years to live. I was diagnosed with osteogenesis imperfecta, which the layperson may know as brittle bone disease.
During that time, you know, when a child is born with a disability, there's always these predictions about their lifespan. So I think that's basically what my grandmother was giving at that time. My grandmother raised me from birth, she grew up in the rural south during the Great Depression, and so when I came along, I could definitely see how that really influenced her and raising me. She always told me how children like me, disabled folks didn't go to school, particularly here in small town South Carolina.
So I know that my life would be incredibly different if she hadn't raised me. Obviously, the polio epidemics of the 1950s were legion, and families were always very worried that there would be some exposure for their kids in the summertime. I remember continuing to ask my family if I could go back to school and everybody was sort of dodging the question, as I remember, because I think they didn't really know what the answer would be. So you have to understand, by age seven, I was reading World Book Encyclopedia.
I was reading Health Encyclopedia. And so I knew, you know, the word autism, what it was. I knew that it applied to me. You know, I was like, yeah, this is all me. If you looked up autism in the dictionary, a picture of me right next to it, it helped me to accept myself better that I wasn't this, you know, this weirdo. There was a name, you know, there was a name back then.
They did not diagnose black children, particularly little black girls with autism. And so I knew that that was one of the things that was going on with me. But it wasn't diagnosed. There was a lot of just generic suspicion about somebody who had a disability. So you never really knew if you went to a restaurant, whether the owner or the waitstaff would even be willing to seat you. So, you know, on more than one occasion, I would go into a restaurant with a friend and would be told that they didn't serve people like me.
I was told on a couple of occasions I would be upsetting to other patrons.
People are this very ignorant in how they view what is normal or what is right and not understand it. There is no such thing as normal. You know, disabled people have always been here. We are trailblazers and have always been in our right, whether you recognize them or not. I'm running on the fact that I'm ranting AWB and on this episode of Throughline from NPR, The History of the Americans with Disabilities Act. Thirty years ago, the Americans with Disabilities Act, the ADA, was signed into law.
Simply put, it prohibits discrimination based on disability. The ADA is considered the most important civil rights law since the landmark legislation of the 1960s. The anniversary of the ADA comes right as our country is experiencing a new civil rights movement, with thousands of protesters pouring into the streets for weeks on end in the midst of a pandemic, fighting for racial justice, fighting for economic justice and demanding new systems that reimagine what's possible for this country and its people. The Americans with Disabilities Act became law thanks to another political movement that forced society to reckon with the question of who really belongs in this episode.
We're looking back at the history of how disability came to be seen as a civil rights issue, the movement behind that mission and what the disability community is still fighting for today. Through line producer Lane Kaplan. Levinson tells this story after the break. Hi, my name is Carlos Ortiz, I'm from Miami, Florida, and you're listening to Throughline from NPR. Until recently, Edwin Hong says he didn't speak out against racism because he was scared of me not to up for.
I'm tired of this, listen now on the Code Switch podcast from NPR.
Support for NPR comes from Newman's Own Foundation, working to nourish the common good by donating all profits from Newman's Own food products to charitable organizations that seek to make the world a better place. More information is available at Newman's Own Foundation. Doug. Part one hidden. For most of American history, people with disabilities were supposed to be hidden. This is Joe Shapiro.
I'm the author of a book called No Pity People with Disabilities Forging a New Civil Rights Movement.
Joe's an investigative reporter at NPR who's been covering the disability movement for more than 30 years.
Let's talk about what now we call the ugly laws. These were laws that said that someone whose looks were deemed offensive, they weren't even allowed out on the streets. So we're talking about people with disabilities.
In the late 19th century, these ugly laws were enforced all across the country. Let's just read what was written into the Chicago City Code in 1881. It with the people who are not allowed in public, quote, any person who is deceased, maimed, mutilated or in any way deformed so as to be an unsightly or disgusting object. People like this are not allowed in public places or they can be fined. Discrimination against people with disabilities goes back long before the 19th century.
The Bible itself depicts disability not as a natural cause, but as a punishment for disobeying God. These messages, spread through religious texts, cemented people with disabilities as outcasts of society, and they informed a deeply flawed ideology, turned serious scientific study by the early 19th hundreds. We've got the rise of eugenics right. Darwin's published The Origin of Species. There's this belief that people with disabilities are a subclass of human beings, that they're a danger because they threaten the human race.
Eugenics was a term coined by British scientist Francis Galton in the late 1980s. He advocated for improving the genetic quality of the human population by breeding, quote, desirable traits. Others sought to weed out the undesirable ones like criminal behavior, poverty and disability. So this is a racist belief and it's one that targets people with disabilities and it justifies putting people in institutions.
Institutionalization was fuelled by these eugenic beliefs. It accelerated in the late 19th century as large facilities were built up in Europe and then America to provide care to people deemed unfit to live in the community. These proclaimed misfits were often forced into these institutions against their will as another way to systematically segregate them from society. And then there are sterilization laws, another eugenic practice which was put to the test in the 1927 Supreme Court case, but versus Bell.
Carrie Buck was born in Virginia in 1986 to a poor single mother who was accused of feeblemindedness and prostitution and sent to an institution. Carrie was put in foster care when she was 17. She was allegedly raped by her foster parents nephew and became pregnant after she gave birth. Her foster parents declared her mentally deficient and committed her to the same institution as her mother, the Virginia Colony for Epileptics and Feebleminded. That same year, Virginia adopted a statute authorizing the compulsory sterilization of anyone the state deemed genetically unfit, Kerry was assigned to be the first person sterilized under this law.
She challenged it in the courts. But in an eight to one decision, the Supreme Court upheld the law. Shortly after the trial. Carrie Buck was sterilized against her will and justice. Oliver Wendell Holmes, in deciding the case, infamously said three generations of imbeciles are enough. That was the prevailing idea, prevent them, cure them, and when they exist, hide them. After the Buck versus Bell, ruling states adopted these sterilization laws all around the country, resulting in nearly 70000 forced sterilizations that continued into the 1970s.
These laws ended up inspiring Nazi Germany's own ethnic cleansing.
It would be the Nazi eugenics that ends up shocking the world, right? The first people to die in the Holocaust, they're disabled people in Germany. They were considered life unworthy of life, was the German phrase. They were the first to die before six million Jews.
And then after World War two, there's this worldwide revulsion at this as horrifying images of Nazi concentration camps surfaced, photos of life inside American institutions also started to emerge, depicting eerily similar inhumane conditions. There were pictures of these horrible places where people were naked and lying in their own filth. Americans saw these and they were shocked because they echoed what they'd just seen from the death camps. So this is what starts a movement. Yes, the United States has gone wild with peace, the post-war world that everyone dreamed about is really here, and the American people are making up for lost time.
After the war, America raced to return to normal, but they couldn't ignore what wasn't the same.
Their family members, veterans who had returned home that my daddy rocks. Funny, my husband is blind. He can't walk by himself. My boy won't ever walk again. A lot of people came back from the war with very significant disabilities, you know, amputations, spinal cord injuries and so on.
This is Mary Lou Breslin.
I'm a senior analyst with Disability Rights, Education and Defense Fund, and I live in Berkeley, California.
You met Mary Lou at the top of the episode. This is really the first period historically where people lived through those levels of injuries.
Assumptions are just called live in hospitals till they die and they fight this and they start saying, no, we want to live regular lives. So there's this effort. It's starting this human rights movement after World War Two. They don't want to live in institutionalized places. They don't want to be in anymore.
Policemen every day will come when they can leave the hospital and take their places in the world for which they thought all they're asking is a chance to prove it.
Prove it to you. Whether or not they thought of themselves as activists, World War Two veterans were leading a sort of Proteau disability movement, and one of these veterans turned activists was a man named Tim Nugent.
Our philosophy, of course, is that you do not protect people with disabilities, but rather equip them to meet all of the hazards and challenges of life.
He very radically thinking for his day, just dreamt up the ways in which it would be possible for people to function on campus.
A program for handicapped individuals.
Without it, I could not have received a college education, things like adding ramps to buildings, moving certain classes to the first floor, retrofitting buses to accommodate wheelchair users. Ideas that were pretty much unheard of everywhere else eventually became a permanent program at U.
Of I Champaign Urbana. And this was in the late 1940s.
Physically disabled students, including those confined to wheelchairs, those with high level or neck level paralysis, are pursuing fifty six curricula in 10 colleges and divisions of the University of Illinois. They're doing just about anything and any other students do.
And by the time I got there, which was, you know, 15 years later, this was in 1962, it had morphed from a program for veterans, mostly men, mostly men with spinal cord injury to a program open to civilians, modeled after this idea of you have to be able to sort of master your environment and you have to have the skills and psychological capacity and commitment to be able to do that. You had to meet the world as it was, and the expectation was if you had to crawl up the stairs to get someplace, that's what you had to do.
Because of this philosophy, the school's scope of accommodations was limited.
Looking back on it, we think of it as exclusionary in many ways, because if you had a disability that required like personal care assistance with dressing and bathing and so on, you would not be admitted if you had those needs. But even that was very progressive for today. So we're really looking at decades and decades ago. This was the mid 20th century. It was a different a different time. So I was born and grew up in Louisville, Kentucky.
My family was basically middle to upper middle class. My dad was a road contractor.
Mary Lou was a Catholic schoolgirl. Knee socks, skirt the whole deal. She caught polio one summer and ended up paralyzed in her arms and legs. As a result, she started using a wheelchair after a stint in the hospital and then rehab. She was ready to go back to school, but there was a problem.
I was not able to get in any of those classroom buildings. They were just old campus with a lot of old stone buildings, with lots of stairs. So there really wasn't a practical way for me to be able to to return.
Her parents were not satisfied with the options that left them. I could have gone to something called the School for Crippled Children, which would have been a segregated, isolated school setting, or she could be home schooled, which in many ways was equally isolating.
But her parents that had done that for a while and found her a tutor. By the time she was a teenager, though, Mary Lou was determined to go back to a real school with other teenagers.
They identified a public school that was outside our area.
The school only had one step up to get inside the building. Not ideal, but better than a whole flight of stairs. Plus, the school agreed to accommodate her whether or not they had actually thought that through.
So I was enrolled. I was dropped off on the first day of school and I looked at my class card and realized that I had classes on the second floor and the third floor and then back again on the first floor and there was no elevator.
So Mary Lou went up to her homeroom teacher and was like, So how do you suppose I get around?
And he was befuddled about what to do and went off to get the principal. And so the principal got this idea that the way we were going to solve the problem was to carry me up and down the stairs every day.
He got together a bunch of football players and told them they were officially responsible for getting Marylou to class.
They would meet me at my class and they would stack their books on my lap. So I'd be peering out over the giant stack of books and each one would grab a corner of the wheelchair and lift it up off the ground and run just as fast as they could up and down the stairs. It never occurred to them to move the class from the third floor to the first floor rather than to carry me up and down the stairs every day.
But there was one place the football team couldn't take her the bathroom.
So to plan for that by not drinking too much in the morning and just being careful with my fluid intake, meaning she didn't go at all.
Later it occurred to me that it would have been pretty easy to have done a very simple modification, which would have required just taking a door off a bathroom stall would have made it possible for me to use the bathroom. But just the fact that I was there at all was such a sort of exceptional outlying situation that modifying the physical environment was not something anybody was thinking about. After high school, Mary Lou went to the University of Illinois in Champagne Urbana.
She graduated with a degree in sociology and moved to Chicago feeling optimistic about finding a job. But months went by with no luck. So in order to pay the bills, she settled on something she never would have imagined herself doing, selling light bulbs.
It was one of these jobs that took advantage of people with disabilities to sell light bulbs over the telephone. We would pitch the light bulb by saying, I am a handicapped worker and I'm selling this light bulb that's going to last a lifetime. I wasn't good at selling light bulbs over the phone at all.
She'd be qualified for a job, but she couldn't access the building it was in. She'd try to cross the street and not be able to get onto the sidewalk because there was no curb cut. She'd be out shopping or eating or doing anything in public and just like in high school, not be able to go to the bathroom. It was just a difficult problem pretty much every day to try to figure out, you know, how to get from A to B.
There were these endless physical barriers standing in her way and then there were the social barriers. One of the most meaningful moments, I think, for me was trying to go to a movie. This was a midnight movie with a friend of mine. This is the middle of the winter. It's freezing, it's cold, it's raining. We're standing outside the theater and we bought our tickets. And then we start to go through the door. And the person who was in charge of the theater said, oh, we can't let you in.
There's no place for you to set. So we're standing on the street, I'm told I can't come in because I use a wheelchair. My friend who was with me that evening, we were standing in the rain, freezing and, you know, 12 o'clock at night and he said, you know, that is a civil rights violation.
I was struck, you know, just struck by that idea, and nobody had ever suggested to me that the fact that I couldn't go to movies or be seated in a restaurant or go to the bathroom or get into a place of business, that where I could have potentially worked was had anything to do with civil rights. It never occurred to me, never. It was this was new news. And it was it was like a lightning bolt. And I support you talking about, you know, we were political on other issues and been active in the civil rights movement and the anti Vietnam War movement.
And yet it never in a million years occurred to me that I was being discriminated against by not being able to be seated in the theater. I thought it was wrong. I thought they should let me in. But it never occurred to me that it was a civil rights issue.
When we come back, disability activists decide to adapt the system, not themselves. Hello, this is Amber from Frazey, Minnesota, and you are listening to Throughline from NPR.
How do you maintain a friendship in the middle of a pandemic, including our last restaurant meal? My last restaurant meal was with you. I love that. I'm not to.
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Support for this podcast and the following message come from Kay Bucksbaum in support of the David Gilkey and Zabihullah Tamanna Memorial Fund, established to strengthen NPR's commitment to training and protecting journalists in high risk environments. Part to access now. Ed Roberts was a California boy born and raised in San Mateo when it came time for college, Ed dreamed of being part of the growing student activism scene at UC Berkeley. So he applied in 1962 and left out one thing that he was completely paralyzed from the neck down, except for a few fingers and toes.
He sleeps in an iron lung, this large tube that breathes for him, and then if he goes out, he needs a portable ventilator on his wheelchair.
Ed gets accepted to Berkeley, but when they find out about his disability, they revoke his admission. The school said, quote, We've tried cripples before and it didn't work. But Ed fought back in his own attempt to integrate the university system. Reluctantly, they accepted him.
I was the only disabled student on the campus. It was very weird how scared at all. It was very clear that they didn't want me there.
Suddenly, other paraplegics and quadriplegics around California hear about this experiment with this man, Ed Roberts, at Berkeley, and they apply. And so a bunch of them end up in this one place. They called themselves the ruling Quad's.
Within three or four years or about 12 of us, we really began to feel that we were fighting for our own independence. And if there was a future for us out in the community, we had to really think through how to do it, how we were and how were we going to make ourselves free.
They started a group on campus to support themselves and then Azu graduated from college. They want to make it out in the world, as everyone did at the university.
But all you'll finish up if you live in a nursing home. And I said, no, that's not why we're here to change that whole idea.
So Ed Roberts gets some federal money and they start the first Center for Independent Living.
The Center for Independent Living was founded in 1972.
They helped those Berkeley students. We've Berkeley. It helped them figure out where to find the job, how to find an accessible apartment, how to put a wrap on an apartment or a house. It was disabled people solving problems for themselves and other disabled people.
It started a movement, a movement that, starting with disabled World War Two veterans, tended to focus more on physical disabilities than cognitive and intellectual ones, a trend that continued with the modern disability movement.
Born on Berkeley's campus, California is the hotbed of disability civil rights activism. It starts there, it spreads and it goes up to the ADA.
Mary Lou Breslin didn't know about Ed Roberts when she felt her only option was to enroll in the University of Illinois program in 1962, the same year he got himself into Berkeley. But sometime after that night at the movie theater, that moment she realized she was being discriminated against. She started rethinking the mindset you of I had tried to instill in her. It wasn't her problem that the movie theater wouldn't let her in. It was the theater's problem and one for them to solve.
Seed was definitely planted at that point.
She started hearing about this movement forming out in California. And by the 1970s, she was living in Berkeley, working at the Center for Independent Living.
I was very quickly caught up to what others had been working on in terms of advancing disability rights policy.
By that point, the movement's biggest achievement was one little piece of a big federal law, Section five of four of the 1973 Rehabilitation Act.
It was really one sentence that says you can't discriminate on the basis of disability if you get federal funding. It was modeled after Title six of the 1964 Civil Rights Act and has much of the same language.
Title six prohibits discrimination on the basis of race, color or national origin. In any federally funded program, Section five afforded basically the exact same thing except swap race with disability.
This new civil rights statute of the 1973 Rehab Act was a complete game changer because for the first time it recognized that people with disabilities experience discrimination and for the first time, the law itself focused on transforming the environment, not the individual.
That shifted the burden from the person being responsible for managing everything and dealing with social isolation and barriers to the responsibility being placed on society and community.
And it was historic because for the first time, people with disabilities were considered a protected class. So Section five of four is written into this larger act, which is great, except nobody paid any attention to it.
Nixon, Ford, nobody wanted to enact it. They thought it'd be too expensive. How are we going to do this? And they ignored it.
When Section five law passed the Department of Health, Education and Welfare, who was supposed to come up with regulations that laid out what anti-discrimination protections needed to be put into place, things that cost businesses and employers money like building a ramp or hiring a sign language interpreter, accommodations that would actually address the architectural and communication barriers people with disabilities faced. But those regulations were never implemented before.
The administration never implemented the act. And now the new secretary, Joseph Califano, says he will sign it in May. The handicapped want him to sign it now.
So there were demonstrations around the country over a period of years.
And in 1977, at the start of the Carter administration, more than 100 people with disabilities take over a federal building in San Francisco and they stay. There is the longest takeover of a federal building in American history. It's the first really militant thing that disabled people have ever done. And we feel like we're building a real social movement and they put their lives on the line.
These are people who needed attendance. They left without their medications, without their equipment. And because of that, there was national press and a focus on really for the first time the issues.
They're tired, they're grubby, they're uncomfortable, but their spirits are soaring. And 125 disabled and handicapped are pledging they'll continue to sit in through tomorrow night, if not longer. The squeeze is on. The water has been turned off on the fourth floor where the occupation army of cripples has taken over.
They stayed in that building for 26 days and they forced the Carter administration to enforce this, a major civil rights law.
Good evening. 35 million Americans, handicapped Americans want a big victory today. But A.W. Secretary Joseph Califano signed the paper today. The implementation of the law began. I think it was most effective in acting as an empowerment agent. This is the beginning. It's a huge, tremendous beginning. It's really a leap forward for us. After five 04, Mary Lou and others founded the Disability Rights, Education and Defense Fund, or Dreadfuls, a national law and policy center to protect federal laws like Section five, 04, and advanced new ones by the late 80s.
Their sights were set on the Americans with Disabilities Act.
I'm oversimplifying here, but the ADA was like Section five or four on steroids. Well, it globally accepted and promoted the idea that it's illegal to discriminate based on disability.
Five 04 only offered protections to federally funded programs and activities. The ADA protections would be sweeping and broad in that level of compliance.
It applied this non-discrimination mandate to employers with 15 or more employees, to public and private transportation, to telecommunications and to what we call public accommodations, restaurants, theaters, retail parks, all the kinds of places you go to every single day.
If signed, the ADA would prohibit discrimination on the basis of disability and all of those arenas and more whether they were federally funded or not. So, for instance, whereas five of four couldn't have forced the movie theater that shut its doors on Mary Lou to figure out a way to accommodate her, the ADA would.
So what happened was, yes, I was assigned to cover a press conference, I believe, about the introduction of Americans with Disabilities Act, which I had never heard of. And I went there and was listening to this piece of legislation being described as a new frontier in the area of civil rights. And that just caught my attention right away.
This is Steve Holmes, a reporter who covered the ADA for The New York Times, because like many people, I really hadn't thought very much about people with disabilities. I tended to view them as objects of pity or sometimes even something or someone that you tended to avoid, as opposed to a sense that these people had a right to be treated fairly. People just didn't I didn't think about them that way. I must confess.
But something changed when Steve started covering the issue. He realized disability was not only still largely ignored by people like him, but stigmatized in society. And it was like a vicious cycle. Avoiding the issue is exactly what perpetuated the stigma.
I remember specifically there was one activist who had difficulty speaking and had difficulty with control of his facial muscles, and as a result, he would often basically drool all over himself. Right. It was not a pleasant sight. He was, I will confess, sometimes difficult to look at. And I realize after a while this is exactly what this issue is about. People that forced you to look at them forced you. And that's that's the whole point. The issue forced you to see people as they are.
One of the reasons disability was so invisible was that the media barely covered it. No, there was no disability beat that I know of. No, it's not even a beat. Now, in the health section, there was often stories about disabilities, but it was usually looked at from a medical perspective as opposed to a rights perspective.
People with disabilities were saying we don't see our problems as problems of health care. It's not our disability. The issue is the issue of civil rights.
And once Joe and Steve started covering it, that became abundantly clear.
It so reminded me of black people at lunch counters and in the south and the 50s and 60s or, you know, gay people at Stonewall at the moment, you realize that people are really serious about demanding their rights. I didn't have very many friends. My twin sister was and is non disabled and so things were pretty different. She was very outgoing and I was a bit shy because I learned to read really early books were my friends.
This is Anita Cameron, who you also met at the beginning of the episode. My name is Anita Cameron. I am director of Minority Outreach for Not Dead Yet, a national disability rights group opposed to doctor assisted suicide and euthanasia of people with disabilities.
Anita did well in school and was on the path to her dream job.
I wanted to be a doctor. I was going to be a neurologist and I was all excited.
She got into med school with there for about a couple of years and I started losing more eyesight and my epilepsy got out of control. And the university, they just said, OK, sorry, know, find another career path. This was nineteen eighty four, so those shortly before my 20th birthday, there was no such thing as the Americans with Disabilities Act back then, so there was no support. I looked at that letter, you know, telling me to choose another career path, and it was like, wow, that was a punch in the gut.
I was depressed, really, really depressed, I felt like a failure and I just kind of wandered, you know, just hopped on a greyhound with nothing but a couple of bucks in my pocket and clothes on my back and just kind of wandered. Eventually, Anita found her way back to her hometown, Chicago, and got involved in Disability Justice Work, specifically working with a group called Adapt Adapt Americans Disabled for Accessible Public Transit.
I found out that ADAPT was this organization that did civil disobedience, non-violent civil disobedience, did direct action. We went around the country protesting Greyhound, protesting the American Public Transit Association, you know, all of that.
Anita jumped in and soon learned she had joined a group with quite the reputation.
We were considered radicals and militants, OK? And especially because we were all poor people. We are disabled people living on a fixed income. And so we were we were seen as a bunch of rag heads, unwashed proletariat. I mean, look, we were not considered respectable and that was the reason why a lot of, you know, the powers that be and whatnot would not meet with a.
Some critics say it was more that ADAPT wouldn't meet with the powers that be. Regardless, they weren't the ones negotiating the terms of the ADA.
Groups like Dred F were the ones at the table while they were meeting with the respectable people. We adapt to, you know, radicals and militants. We were out there, you know, keeping the pressure on, kept on blocking buses and shutting down buildings and and things of that nature.
While Congress listened to testimonies and pored over new drafts of the bill, ADAPT was getting impatient.
And in March of nineteen ninety, we organized the Capitol Crawl.
And now that there are hundreds of people discordance who got out of their wheelchairs and crawled up the steps of the Capitol, none of them could walk until they all just, you know, painstakingly one step at a time to highlight the second class citizenship.
You know, that we helped to just bring awareness not just to the bill, but again, for the ability to be seen now, the ability to have people look at that and not turn away or not look at them in pity or not turn away in disgust, but to view them as as full contributors to the society.
God, I pray to God I know I was one of the ones who participated in that crawl up, I went up backwards carrying someone's wheelchair. It was very hot and I got really exhausted. And so the rest of the way up, I literally crawled up scooty, you know, up, you know, but but bumping up the Capitol stairs, it was amazing. We were crawling in history. We really were. We were crawling in history.
After the Capitol crawl, most politicians from both parties supported the bill. Still, the odds looked pretty grim. The Washington was not very open to civil rights laws, but another key supporter turned out of the ADA and turned out to be President George H.W. Bush.
He had won election in 1988 and he had been vice president on a Ronald Reagan compared to his predecessor, Bush had promised a kinder and gentler nation.
Now, the White House was really split on the a.D.A. He had some advisers who were vehemently, strongly opposed to the idea, and there were others who liked it. And the ones who liked it succeeded because they realized that George H.W. Bush can understand disability, there was disability in his family. Well, Barbara Bush's big issue was a literacy teaching people to read, hi, I'm Barbara Bush. Did you know literacy in this country could be eliminated by the year 2000?
The key is to get our young people reading now.
What if people didn't know I was? Why? And the reason? It turned out one of her sons, Neal, had dyslexia. And Barbara Bush had spent a lot of time when he was in school helping them read. And she was told the Bushies were told, oh, he'll never go to college. He did, but they had dealt with his learning disability. George and Barbara Bush had dealt with tragedy when a young daughter, Robin, died.
She was three. She died of leukemia. So there was disability in that family.
They understood this is what drove most of the Ada's biggest political allies personal connections. Every family deals with disability. It doesn't matter if you're Republican or Democrat.
And that's what helped push it over the finish line. So on July 26, 1990, George Bush signed the ADA into law. There's this joyous bill signing.
I believe it was a really nice day out there in this splendid scene of hope spread across the South Lawn of the White House.
I remember George Bush seated at a desk and signing and all these activists and senators surrounding him.
And George Bush says, I now lift my pen to sign this Americans with Disabilities Act and say, let the shameful walls of exclusion come tumbling down, finally come tumbling down.
God bless you all.
Everybody knew this was this was a big deal. This was a really big deal. I was elated. It was like, wow, this is a whole new era for people with disabilities. I thought that things would just change. Life after the a.d.a when we come back. Hi, this is Damian calling from Sydney, Australia, and you're listening to NPR through life. I love the show. I listen to it as soon as the episodes come out.
Thanks so much for your work. Just like. Support also comes from the Walton Family Foundation, where opportunity takes root. More information is available at Walton Family Foundation. Doug. Part three a.D.A generation. The memories that I have is definitely post a.D.A with going to school a year later. This passage, you know, that's been my life. You know, I really don't know a world really without the a.D.A. My name is Phylis Thompson.
I'm a social worker, activist and writer consultant and with a sexual violence, is the third person you met at the very beginning of the episode when I was born.
They gave me the expectancy of four to eight years to live. Luckily for me, my mother is LPN and she noticed that I wasn't as active in utero and moving. So they really allow the doctor to start to suspect that, you know, something may be going on. And I was diagnosed with Gen. Imperfective Viarsa was born in 1985 with what's known as Brittle Bones disease.
She remembers going to the doctor as a kid a lot for surgeries or broken bones. So my childhood is kind of a mix of, you know, medical stuff mixed in with kind of normal childhood stuff.
Because she started school soon after the ADA passed, she was one of the first to reap its benefits.
So I've always, you know, K through 12, I had a at eight that helped me get to class and so on, so forth. When I got to the school where we had kind of you have books and lockers, I was given the ability to. Have a set of books at home and a set of books at schools, I'll have to look them around in my backpack. So I just feel very fortunate that then my needs that I had as a student was there from the beginning, like the moment that I started school in kindergarten.
It was just something that I thought everybody had until I realized that it wasn't the case.
I was a student in what we call mainstream classroom, which is the pinnacle of regular classes, and there was maybe a handful of us that was in mainstream, but everybody else was under the special education classes in some ways created this what we call the community support dynamic of, you know, good to save a student, but you're in mainstream class, which you're neurotypical or able bodied classmates or at least perceived to be neurotypical. Everybody, classmates, a super krip is a common stereotype that paints someone as some sort of heroic figure who overcomes their disability or defies the odds and some inspiring way.
And you are kind of hero in a way that the students who are not in those classes or not. So, you know, it just really created this separation of the same students by the class. There was even though we were all under the special education umbrella, but there was this hierarchy that existed, you know, just really created that us versus them dynamic that should not have existed. It was just very disturbing things to hear educators or teachers say about another student in front of a student, then wondering why they even bothered to be brought to school.
Even as a kid, I knew how they would talk about the students weren't OK. I can only imagine the things that are said in the teachers lounge. Well, Melissa was getting the resources she needed in school, the world outside was trying to catch up. The ADA passed in 1990, but there was a multi year window to implement Accommodation's things like curb cuts and sidewalks, teachers aides, Braille signage. So cities, schools, business owners, they had to figure out how to make all this happen and how to pay for it.
You know, the ADA is basically an unfunded mandate and it's those of us with disabilities who are the watchdogs. And you know, why? Why should it be that those of us who are oppressed have to be the one to continuously fight for rights and to make people do what the law says that they should have to do.
The ADA is one thing and does one thing in an extremely important way. But it's a civil rights law is not self executing. You have to go out there and make it happen. You have to file complaints and talk entities into complying and file lawsuits. You have to use it. It's a tool.
I think the thing that angers me so much as a price is put on the freedom of people with disabilities or prices put on the rights of people with disabilities. Because of the way the law was written, there was no ADA police and no ADA bank account, this lack of enforcement and funding meant that the one big fight to pass the ADA then broke into a thousand tiny fights after it became law, a lawsuit to get a ramp here, a petition before the school board to get large print textbooks.
They're all fights meant to make it possible for disabled people to live fully in society, to be seen in the world. But the ADA didn't solve these problems overnight or even 30 years later. You can go into a doctor's office and still not have access to accessible examinee, tables, accessible scales, things of that nature. When I go to the emergency room with my wife, she's deaf. We still have to fight to get an interpreter. Even though these fights continue, the movement itself has evolved.
And Joe Shapiro says so has the mindset. Before the ADA, a lot of people with disabilities were used to fighting for what they could get. Now, the ADA generation, the people who grew up protected by the ADA, they have much higher expectations of the promise of the ADA. They expect full opportunities to everything in American life, jobs and access to transportation in public places to school. And the ADA has chipped away at the long standing stigma, changing the way people relate to their disabilities and themselves.
So younger people are much more likely to say they have a disability and they claim a disability as an important part of their identity and claim climate with pride. Younger people have a broader definition of disability rights. They've expanded it to include disability justice, that when you talk about disability issues, you have to look at it through a lens of protecting racial minorities and other marginalized people.
Identity is something by thinks about all the time, she's now a social worker and runs a blog called Ramp Your Voice, where I can talk about disability from intersexual is from different angles that matter to me, whether it be politics, health care, sexuality, sex, gender, education attainment. I can just talk about what I see in the world around. Like for me, I navigate this world as a black woman. You cannot force me to just focus on my disability and not my blackness or one of the particularly being a black woman from the south, especially.
You can't do that. But she wasn't seeing that representation in the community. So she launched the hashtag disability to white to shine a light on who gets seen, you know, the ones that get the most attention.
You know, it's about beauty, sexualities, white women, stories and experiences that get Seymours. It went viral. And when things go viral, there's praise and there's backlash. White people are upset. Now, I think that was the first time in my life that I was called the N-word and I was called the N-word on Twitter for a 12 hours. And it really showed me that, hey, I struck a nerve be the hashtag have meaning. And they called it, in a way, for that long by white folks who don't want to recognize that they have white privilege and can oppress people of color to really showed me that we are long overdue for these type of conversations in the community.
And I think particularly for activists in my generation, Gen X and then those coming up behind me, I think we are the ones that really fought in the community to have these honest conversations. You were you were four or five years old when the ADA was passed, and that was 30 years ago, you know, in 30 years, what do you want that five year old kids living with disabilities life to be like? I would like for the community to look less like.
I would like for the stories that's told to be less like. I would like for disabled students, especially of color, to see themselves more in their schools, in their communities, on TV or online elsewhere. They don't have the hunger for that so that the children of today don't have to go without those stories, those faces. That some of this is one part of the struggle for visibility that the younger generation is fighting for today, another is something that the disability community has been fighting for since the very beginning, keeping people out of institutions.
We're living with a legacy of institutionalization in the US. This is a legacy that has been perpetuated to some extent by federal policy, which allows federal dollars to be used to institutionalize people, but not to allow them to be supported to live independently in the community. The ADA has intersected with this issue through the Olmstead decision. Olmstead vs. Elsie is the groundbreaking Supreme Court case in which two women with intellectual disabilities and mental illness diagnoses challenged their institutionalization. The court ruled that under certain criteria, people with disabilities need to be provided options that allow them to live in their communities rather than being institutionalized against their will.
This was a big win. That decision has spurred a shift in how much federal money goes to institutionalization versus community support. Now, more than 50 percent of federal money is now spent on community living opportunities rather than institutionalization. But that's 30 years later, and it's still only 50 percent.
There's so much further that we have to go. I mean, this is the age of covid and we're seen as disposable or expendable. I keep thinking about what happened to Michael Higson in Texas. The disabled black man who was denied covid-19 treatment. He called covid-19 in the nursing home, was sent to a hospital. The doctor decided that specifically because of his disability, that he had no quality of life and so they refused to treat him for covid-19. They put them in hospice and, you know, withheld food and liquids and he died.
So we still have a long way to go, is society accepting us as people with disabilities? We talk about police brutality, half of the folks murdered and brutalized by police or people with disabilities. You know, there are laws in place and whatnot, but I think our society kind of has to catch up to making sure that we're part of this, that we that we're not second class citizens, that we're not disposable, were people are the largest minority group in this country.
And by you resisting, you're saying that you don't care about the participation of the largest groups that have power, that have buying power, that has voting power. You have all these things that can shape society.
We have such enormous exclusion still to deal with, which is rooted very much in poverty and in racial injustice, that the great message of the ad gets a little bit, I think, camouflaged and over shadowed by these remaining challenges. But I do hope that the the media attention is not only on the people who made it possible to have the ADA, but also, you know, the real story is that we really have seen a transformation in society in a way that's ultra necessary in order for us to take the next steps.
You know, the really transformative aspect of the ADA, I think, is about making it possible for people to be out and about in the world and have a right that they can assert in a lot of different situations. And by doing that, people are more likely to be feeling that they that they are part of their communities, that they belong and they're more likely to be perceived that way socially. And to me, that's the most important message of the 30th, is to celebrate the extraordinary things it's done and how it's made a difference in so many people's lives.
You know, overall, it was a life changer. I mean, I'm talking to young disabled people who never knew a world before, the ADA never knew a world. If the ADA had been around back then, I will probably be a doctor. But, you know, it was a blessing in disguise because I got to do, I think, so much more with my life. You know, a doctor might see over a career a few hundred and maybe even a few thousand patients.
By the work that I've done, I got to help millions upon millions of Americans. That's it for this week's show I'm running Abdelfattah, I'm from Arab Louis, and you've been listening to Throughline from NPR. This episode was produced by me and me and Jamie York, Lawrence Lane, Kalpen Levinsohn, Julie came here, myocarditis. Natalie Barton, fact checking for this episode was done by Kevin Vocal. We'd like to give a special thanks to Sarah Ludeman, our editorial adviser on today's episode.
Also, thanks to Alice Wong, Pat Wright, Arlene Myerson, Hi Feldblum, Marilyn Golden, Lex Frieden and Heather Watkins for their help shaping today's show. Thanks also to the Disability Rights, Education and Defense Fund and to the ADAPT Museum for some of the footage you heard. And finally, thank you to Camille Smiley and on your grandma. Our music was composed by Ramtane and his band Drop Electric, which includes Naveed Marvy Show Fujiwara Onya Masani. If you have an idea or like something you heard on the show, please drop us a line at through line at MPEG or hit us up on Twitter at Throughline NPR.
Thanks for listening.