A.D.A. Now!

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[3] 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.

[4] It was 1952 and I was seven years old.

[5] 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.

[6] By the next morning, my dad came in and said, why are you still in bed?

[7] It's past the time you usually get up.

[8] And I said, I don't think I can get out of bed.

[9] Within about 24 hours, I had been hospitalized, and it was pretty clear that I had contracted the virus.

[10] I was born in 1965.

[11] I'm a twin, and my mom knew she was having my twin.

[12] She did not know she was having me. She had my sister at home and kind of went about her business because that's what you did back in the day.

[13] And later on, got sick and went back into labor, and she didn't know what was happening.

[14] And so she got herself to the hospital.

[15] and I was born, weighing three pounds, and almost died at birth.

[16] I spent the first few years of my life pretty much in and out of hospitals and clinics.

[17] I had eye surgeries and seizures had started.

[18] And when I was real little and going through, you know, a lot of hospital stays, I would hear the doctors telling my parents to let me go.

[19] Just let her go.

[20] You've got another child.

[21] When I was born, they gave me the expectancy of four to eight years to live.

[22] I was diagnosed with osteogenesis imperfecta, which the lay person may know as Britta bone disease.

[23] During that time, you know, when a child was born with disability, there's always these predictions about their lifespan.

[24] So I think that's basically what my grandma was giving at that time.

[25] My grandmother raised me from birth.

[26] She grew up in the room.

[27] rural South, during the Great Depression.

[28] And so when I came along, I could definitely see how that really influenced her and raising me. She would always tell me how children like me, quote -unquote, disabled folks, didn't go to school, particularly here in small town, in Sacramento.

[29] 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.

[30] that there would be some exposure for their kids in the summertime.

[31] 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.

[32] So you have to understand by age seven, I was reading World Book Encyclopedia.

[33] I was reading health encyclopedias.

[34] And so I knew, you know, the word autism, what it was.

[35] 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, it would be a picture of me right next to it.

[36] It helped me to accept myself better that I wasn't this, you know, this weird old.

[37] There was a name, you know, there was a name.

[38] Back then, they did not diagnose black children, particularly little black girls, with autism.

[39] And so I knew that that was one of the things that was going on with me, but it wasn't diagnosed.

[40] There was a lot of just generic suspicion about somebody who had a disability.

[41] So you never really knew if you went into a restaurant, whether the owner or the wait staff would even be willing to seat you.

[42] 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.

[43] People are just very ignorant in how they view what is quote -unquote normal or what is quote -unquote right and not understand that there are no such thing as normal.

[44] You know, disabled people have always been here.

[45] We are trailblazers and have always been in our own right, whether you recognize that or not.

[46] I'm Ron Daud de Fattah.

[47] I'm Ramtin Arablui.

[48] and on this episode of ThruLine from NPR, the history of the Americans with Disabilities Act.

[49] 30 years ago, the Americans with Disabilities Act, the ADA, was signed into law.

[50] Simply put, it prohibits discrimination based on disability.

[51] The ADA is considered the most important civil rights law since the landmark legislation of the 1960s.

[52] The anniversary of the ADA comes right as our country's experience.

[53] 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.

[54] The Americans with Disabilities Act became law thanks to another political movement that forced society to reckon with the question of who really belongs.

[55] 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.

[56] ThruLine producer Lane Kaplan Levinson tells this story after the break.

[57] Hi, my name's Carlos Ortiz.

[58] I'm from Miami, Florida, and you're listening to ThruLine from NPR.

[59] Support for this podcast and the following message come from Wise, the app that makes managing your money in different currencies easy.

[60] With Wise, you can send and spend money internationally at the mid -market exchange rate, no guesswork, and no hidden fees.

[61] Learn more about how Wise could work for you at Wise .com.

[62] Part 1.

[63] Hidden For most of American history, people with disabilities were supposed to be hidden.

[64] This is Joe Shapiro.

[65] I'm the author of a book called No Pity, People with Disabilities, Forging a New Civil Rights Movement.

[66] Joe's an investigative reporter at NPR, who's been covering the disability movement for more than 30 years.

[67] Let's talk about what now we call the ugly laws.

[68] These were laws that said that someone whose looks were deemed offensive.

[69] They weren't even allowed out on the streets.

[70] So we're talking about people with disabilities.

[71] In the late 19th century, these ugly laws were enforced all across the country.

[72] Let's just read what was written into the Chicago City Code in 1881.

[73] It lists the people who are not allowed in public.

[74] Quote, any person who is diseased, maimed, mutilated, or in any way deformed, so as to be an unsightly or disgusting object.

[75] People like this are not allowed.

[76] in public places, or they can be fined.

[77] Discrimination against people with disabilities goes back long before the 19th century.

[78] The Bible itself depicts disability not as a natural cause, but as a punishment for disobeying God.

[79] 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.

[80] By the early 1900s, we've seen got the rise of eugenics, right?

[81] Darwin's published the origin of species.

[82] 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.

[83] Eugenics was a term coined by British scientist Francis Galton in the late 1800s.

[84] He advocated for improving the genetic quality of the human population by breeding, quote, desirable traits.

[85] Others sought to weed out the undesirable ones.

[86] like criminal behavior, poverty, and disability.

[87] So this is a racist belief, and it's one that targets people with disabilities.

[88] And it justifies putting people in institutions.

[89] Institutionalization was fueled by these eugenic beliefs.

[90] 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.

[91] These proclaimed misfits were often forced into these institutions against their will as another way to systematically segregate them from society.

[92] And then there are sterilization laws.

[93] Another eugenic practice, which was put to the test in the 1927 Supreme Court case.

[94] Buck v. Bell.

[95] Carrie Buck was born in Virginia in 1906 to a poor single mother who was accused of feeble -mindedness and prostitution and sent to an institution.

[96] Carrie was put in foster care.

[97] When she was 17, she was allegedly raped by her foster parents' nephew and became pregnant.

[98] 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.

[99] That same year, Virginia adopted a statute authorizing the compulsory sterilization of anyone the state deemed genetically unfit.

[100] Carrie was assigned to be the first person sterilized under this law.

[101] She challenged it in the courts, but in an eight to one decision, the Supreme Court upheld the law.

[102] Shortly after the trial, Carrie Buck was sterilized against her will.

[103] And Justice Oliver Wendell Holmes in deciding the case infamously said three generations of imbeciles are enough.

[104] That was the prevailing idea, prevent them, cure them, and when they exist, hide them.

[105] After the Buck v. Bell ruling, states adopted these sterilization laws all around the country, resulting in nearly 70 ,000 forced sterilizations that continued into the 1970s.

[106] These laws ended up inspiring Nazi Germany's own ethnic cleansing.

[107] It would be the Nazi eugenics that ends up shocking the world, right?

[108] The first people to die in the Holocaust, they're disabled people in Germany.

[109] They were considered life unworthy of life, was the German phrase.

[110] They were the first to die before six million Jews.

[111] And then after World War II, there's this worldwide revulsion at this.

[112] As horrifying images of Nazi concentration camps surfaced, photos of life inside American institutions also started to emerge, depicting eerily similar inhumane conditions.

[113] 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.

[114] So this is what starts a movement.

[115] Yes, the United States has gone wild with peace.

[116] The post -war world that everyone dreamed about is really here.

[117] And the American people are making up for lost time.

[118] After the war, America raced to return to normal.

[119] But they couldn't ignore what wasn't the same.

[120] Their family members, veterans who had returned home.

[121] But my daddy walks funny.

[122] My husband is blind.

[123] He can't walk by himself.

[124] My boy won't ever walk again.

[125] A lot of people came back from the war with very significant disabilities, you know, amputation, spinal cord injuries, and so on.

[126] This is Mary Lou Breslin.

[127] I'm a senior analyst with disability rights, education, and defense fund, and I live in Berkeley, California.

[128] You met Mary Lou at the top of the episode.

[129] This is really the first period historically where people live through those levels of injuries.

[130] Assumptions are just going to live in hospitals until they die, and they fight this, and they start saying, no, we want to live regular lives.

[131] So there's this effort that's starting this human rights movement after World War II.

[132] They don't want to live in institutionalized places.

[133] They don't want to be hidden anymore.

[134] For these men, V -Day will come and they can leave the hospital and take their places in the world for which they fought.

[135] All they're asking is a chance to prove it.

[136] Prove it to you.

[137] Whether or not they thought of themselves as activists, World War II veterans were leading a sort of proto -disability movement.

[138] And one of these veterans turned activists was a man named...

[139] Tim Nugent.

[140] 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.

[141] He very radically thinking for his day, just dreamt up the ways in which it would be possible.

[142] for people to function on campus.

[143] A program for handicapped individuals.

[144] Without it, I could not have received a college education.

[145] 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.

[146] Eventually, it became a permanent program at U of I, Champaign -Urbana, and this was in the late 1940s.

[147] Well, our physically disabled students, including those confined to wheelchairs, those with high level or neck level paralysis, are pursuing 56 curricula in 10 colleges and divisions of the University of Illinois.

[148] They're doing just about anything that any other student would do.

[149] And by the time I got there, which was 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 in psychological capacity and commitment to be able to do that.

[150] You had to meet the world as it was.

[151] And the expectation was if you had to crawl up the stairs to get someplace, that's what you had to do.

[152] Because of this philosophy, the school's scope of accommodations was limited.

[153] 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.

[154] But even that was very progressive for its day.

[155] So we're really looking at it.

[156] Decades and decades ago, this was the mid -20th century.

[157] It was a different time.

[158] So I was born and grew up in Louisville, Kentucky.

[159] My family was basically middle to upper middle class.

[160] My dad was a road contractor.

[161] Mary Lou was a Catholic school girl.

[162] socks, skirt, the whole deal.

[163] She caught polio one summer and ended up paralyzed in her arms and legs.

[164] As a result, she started using a wheelchair.

[165] After a stint in the hospital and then rehab, she was ready to go back to school.

[166] But there was a problem.

[167] I was not able to get in any of those classroom buildings.

[168] They were, this was an old campus with a lot of old stone buildings with lots of stairs.

[169] So there really wasn't a practical way for me to be able to return.

[170] Her parents were not satisfied with the options that left them.

[171] I could have gone to something called the school for crippled children, which would have been a segregated, isolated school setting.

[172] Or she could be homeschooled, which in many ways was equally isolating.

[173] But her parents settled on that for a while and found her a tutor.

[174] By the time she was a teenager, though, Mary Lou was determined to go back to a real school with other teenagers.

[175] They identified a public school that was outside our area.

[176] The school only had one step up to get inside the building.

[177] Not ideal, but better than a whole flight of stairs.

[178] Plus, the school agreed to accommodate her, whether or not they had actually thought that through.

[179] 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.

[180] And there was no elevator.

[181] So Mary Lou went up to her homeroom teacher and was like, so how do you suppose I get around?

[182] And he was effuddled about what to do and went off to get the principal.

[183] 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.

[184] He got together a bunch of football players and told them they were officially responsible for getting Mary Lou to class.

[185] They would meet me at my class and they would stack their books on my lap.

[186] So I'd be peering out over the giant stack of books.

[187] 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.

[188] 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.

[189] But there was one place the football team couldn't take her, the bathroom.

[190] So sort of planned for that by not drinking too much in the morning and just being careful, you know, with my fluid intake.

[191] Meaning she didn't go at all.

[192] 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.

[193] 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.

[194] After high school, Mary Lou went to the University of Illinois in Champaign -Urbana.

[195] She graduated with a degree in sociology and moved to Chicago, feeling optimistic about finding a job.

[196] But months went by with no luck.

[197] So in order to pay the bills, she settled on something she never would have imagined herself doing.

[198] Selling light bulbs, it was one of these jobs that took advantage of people with disabilities to sell light bulbs over the telephone.

[199] We would pitch the light bulb by saying, I am a handicapped worker, and I'm selling this light bulb that, that's going to last a lifetime.

[200] I wasn't good at selling light bulbs over the phone at all.

[201] She'd be qualified for a job, but she couldn't access the building it was in.

[202] She'd tried across the street and not be able to get onto the sidewalk because there was no curb cut.

[203] She'd be out shopping or eating or doing anything in public.

[204] And just like in high school, not be able to go to the bathroom.

[205] It was just a difficult problem pretty much every day to try to figure out how to get from A to B. There were these endless physical barriers standing in her way, and then there were the social barriers.

[206] One of the most meaningful moments, I think, for me, was trying to go to a movie.

[207] This was a midnight movie with a friend of mine.

[208] This is the middle of the winter.

[209] It's freezing.

[210] It's cold.

[211] It's raining.

[212] We're standing outside of the theater.

[213] And we bought our tickets, and then we start to go through the door.

[214] And the person who was in charge of the theater said, oh, we can't let you in.

[215] There's no place for you to sit.

[216] So we're standing out on the street.

[217] I'm told I can't come in because I use a wheelchair.

[218] My friend who was with me that evening, we were standing in the rain and freezing, and, you know, 12 o 'clock at night.

[219] And he said, you know, that is a civil rights violation.

[220] I was struck, you know, just struck by that idea.

[221] 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 never occurred to me, never.

[222] It was, this was new news.

[223] And it was like a lightning bolt.

[224] And I said, what are you talking about?

[225] You know, we were political on other issues and been active in the civil rights movement and the anti -Vietnam War movement.

[226] And yet it never, in a million years, occurred to me that I was being discreet.

[227] by not being able to be seated in the theater.

[228] I thought it was wrong.

[229] I thought they should let me in, but I never occurred to me that it was a civil rights issue.

[230] When we come back, disability activists decide to adapt the system, not themselves.

[231] Hello, this is Amber from Frasie, Minnesota, and you are listening to ThruLine from NPR.

[232] Christian nationalists want to turn America into a theocracy, a government under biblical rule.

[233] If they gain more power, it could mean fewer rights for you.

[234] I'm Heath Druson, and on the new season of Extremely American, I'll take you inside the movement.

[235] Listen to Extremely American from Boise State Public Radio, part of the NPR Network.

[236] Part 2.

[237] Access Now.

[238] Ed Roberts was a California boy, born and raised in San Mateo.

[239] When it came time for college, Ed dreamed of being part of the growing student activism scene at UC Berkeley.

[240] 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.

[241] He sleeps in an iron long, this large tube that breathes for him, and then if he goes out, he needs a portable ventilator on his wheelchair.

[242] Ed gets accepted to Berkeley, but when they find out about his disability, they revoke his admission.

[243] The school said, quote, We've tried cripples before, and it didn't work.

[244] But Ed fought back in his own attempt to integrate the university system.

[245] Reluctantly, they accepted him.

[246] I was the only disabled student on the campus.

[247] It was very weird.

[248] I was scared out all of the time.

[249] It was very clear that they didn't want me there.

[250] Suddenly other paraplegics and quadriplegics around California hear about this experiment with this man, Ed Roberts, at Berkeley, and they apply.

[251] And so a bunch of them end up in this one place.

[252] They called themselves the rolling quads.

[253] Within three or four years, there are about 12 of us.

[254] We really began to feel that we were fighting for our own independence and that there was a future for us out in the community.

[255] We had to really think through how to do it.

[256] How were we going to make ourselves free?

[257] They started a group on campus to support themselves.

[258] And then as they're graduating from college, They want to make it out in the world.

[259] I remember one dean at the university said, oh, you'll finish your Ph .D., and then you'll live in a nursing home.

[260] And I said, no, that's not the plan.

[261] We're here to change that whole idea.

[262] So Ed Roberts gets some federal money, and they start the first Center for Independent Living.

[263] The Center for Independent Living was founded in 1972.

[264] They helped those Berkeley students leave Berkeley.

[265] It helped them figure out where to find a job, how to find an accessible apartment, how to put a ramp on an apartment or a house.

[266] It was disabled people solving problems for themselves and other disabled people.

[267] It started a movement.

[268] A movement that, starting with disabled World War II 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.

[269] California is the hotbed of disability civil rights activism.

[270] It starts there, it spreads, and it builds up to the ADA.

[271] 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.

[272] But sometime after that night at the movie theater, that moment she realized she was being discriminated against, She started rethinking the mindset U of I had tried to instill in her.

[273] It wasn't her problem that the movie theater wouldn't let her in.

[274] It was the theater's problem and one for them to solve.

[275] You know, the seed was definitely planted at that point.

[276] 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.

[277] I was very quickly caught up to what others had been working on in terms of advancing disability rights policy.

[278] By that point, the movement's biggest achievement was one little piece of a big federal law, Section 504 of the 1973 Rehabilitation Act.

[279] It was really one sentence that says you can't discriminate on the basis of disability if you get federal funding.

[280] It was modeled after Title VI of the 1964 Civil Rights Act and has much of the same language.

[281] Title VI prohibited discrimination on the basis of race, color, or national origin in any federally funded program.

[282] Section 504 did basically the exact same thing, except swap race with disability.

[283] This new civil rights statute of the 1973 Rehab Act was a complete game changer.

[284] Because for the first time, it recognized that people with disabilities experienced discrimination.

[285] And for the first time, the law itself focused on transforming the environment, not the individual.

[286] It shifted the burden from the person being responsible for managing a person.

[287] everything and dealing with social isolation and barriers to the responsibility being placed on society and community.

[288] And it was historic because for the first time, people with disabilities were considered a protected class.

[289] So Section 504 is written into this larger act, which is great, except...

[290] Nobody paid any attention to it.

[291] Nixon Ford, nobody wanted to enact it.

[292] They thought it'd be too expensive.

[293] How are we going to do this?

[294] And they ignored it.

[295] When Section 504 passed, the Department of Health, Education and Welfare, Hugh, 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.

[296] But those regulations were never implemented.

[297] The court administration never implemented the act.

[298] And now the new H .EW secretary, Joseph Kalafano, says he will sign it in May. The handicapped wanting to sign it now.

[299] So there were demonstrations around the country over a period of years.

[300] 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.

[301] It's the longest takeover of a federal building in American history.

[302] It's the first really militant thing that disabled people have ever done.

[303] And we feel like we're building a real social movement.

[304] And they put their lives on the line.

[305] These are people who needed attendance.

[306] They left without their medications, without their equipment.

[307] And because of that, there was national press and a focus on really for the first time the issues.

[308] They're tired.

[309] They're grubby.

[310] They're uncomfortable.

[311] But their spirits are soaring.

[312] and 125 disabled and handicapped are pledging they'll continue the sit -in through tomorrow night, if not longer.

[313] The squeeze is on, though.

[314] Hot water has been turned off on the fourth floor, where the occupation army of cripples has taken over.

[315] They stayed in that building for 26 days, and they forced the Carter administration to enforce this major civil rights wall.

[316] Good evening.

[317] 35 million Americans, handicapped Americans, won a big victory today.

[318] When H .E .W. Secretary Joseph Califano signed a paper today, the implementation of the law began.

[319] I think it was most effective in acting as an empowerment agent.

[320] This is a beginning.

[321] It's a huge, tremendous beginning.

[322] It's really a leap forward for us.

[323] After 504, Mary Lou and others founded the Disability Rights Education and Education and and Defense Fund, or DREDF, a national law and policy center to protect federal laws like Section 504 and advance new ones.

[324] By the late 80s, their sights were set on the Americans with Disabilities Act.

[325] I'm oversimplifying here, but the ADA was like Section 504 on steroids.

[326] Well, it globally accepted and promoted the idea that it's illegal to discriminate based on disability.

[327] 504 only offered protections to federally funded programs and activities.

[328] The ADA protections would be sweeping and broaden that level of compliance.

[329] 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.

[330] Restaurants, theaters, retail, parks.

[331] All the kinds of places you go to every single, If signed, the ADA would prohibit discrimination on the basis of disability in all of those arenas and more, whether they were federally funded or not.

[332] So, for instance, whereas 504 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.

[333] So what happened was, yes, I was assigned to cover a press conference.

[334] I believe about the introduction of Americans with Disabilities Act, which I had never heard of.

[335] And I went there and was listening to this piece of legislation being described as a new frontier in the area of civil rights.

[336] And that just caught my attention right away.

[337] This is Steve Holmes, a reporter who covered the ADA for the New York Times.

[338] Because like many people, I really hadn't thought very much about people with disabilities.

[339] I tended to view them of 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.

[340] People just didn't.

[341] I didn't think about him that way, I must confess.

[342] But something changed when Steve started covering the issue.

[343] He realized disability was not only still largely ignored by people like him, but stigmatized in society.

[344] And it was like a vicious cycle.

[345] Avoiding the issue is exactly what perpetuated the stigma.

[346] I remember specifically there was one activist who had difficulty speaking and had difficulty with control of his facial muscles.

[347] And as a result, he would often basically drool all over himself, right?

[348] It was not a pleasant sight.

[349] He was, I will confess, sometimes difficult to look at.

[350] And I realize after a while, this is exactly what this is.

[351] issue is about.

[352] People that forced you to look at them.

[353] It forced you.

[354] And that's the whole point.

[355] The issue forced you to see people as they are.

[356] One of the reasons disability was so invisible was that the media barely covered it.

[357] No, there was no disability beat that I knew of.

[358] No, it's not even a beat now.

[359] 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.

[360] People with disabilities were saying we don't see our problems as problems of health care.

[361] It's not our disability.

[362] The issue is the issue of civil rights.

[363] And once Joe and Steve started covering it, that became abundantly clear.

[364] It so reminded me of black people at lunch counters in the South, in the 50s and 60s.

[365] or, you know, gay people at Stonewall.

[366] At some moment, you realize that people are really serious about demanding their rights.

[367] I didn't have very many friends.

[368] My twin sister was and is non -disabled.

[369] And so things were pretty different.

[370] She was very outgoing.

[371] And I was a bit shy because I learned to read really early books were my friends.

[372] This is Anita Cameron, who you also met at the beginning of the episode.

[373] My name is Anita Cameron.

[374] 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.

[375] Anita did well in school and was on the path to her dream job.

[376] I wanted to be a doctor.

[377] I was going to be a neurologist.

[378] And I was, you know, all excited.

[379] She got into med school.

[380] Went there for about a couple of years, and I started losing more eyesight, and my epilepsy got out of control.

[381] And the university, they just said, okay, sorry, you know, find another career path.

[382] This was 1984, so there's shortly before my 20th birthday.

[383] There was no such thing as the Americans with disabilities.

[384] back then, so there was no support.

[385] I looked at that letter, you know, telling me to choose another career path.

[386] And it was like, wow, that was a punch in the gut.

[387] I was depressed, really, really depressed.

[388] You know, I felt like a failure.

[389] 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.

[390] Eventually, Anita found her way back to her hometown, Chicago, and got involved in disability justice work, specifically working with a group called Adapt.

[391] Adapt, Americans Disabled for Accessible Public Transit.

[392] I found out that Adapt was this organization that did civil disobedience, nonviolent civil disobedience, did direct action.

[393] We went around the country protesting, Greyhound, protesting the American Public Transit Association, you know, all of that.

[394] Anita jumped in and soon learned she had joined a group with quite the reputation.

[395] We were considered radicals and militants, okay, and especially because we were all poor people.

[396] We were all disabled people living, you know, on a fixed income.

[397] And so we were seen as a bunch of rag tags, unwashed proletariat.

[398] I mean, look, we were not considered respectable.

[399] And that was the reason why a lot of, you know, the powers that be and whatnot would not meet with adapt.

[400] Some critics say it was more that ADAPT wouldn't meet with the powers that be.

[401] Regardless, they weren't the ones negotiating.

[402] the terms of the ADA.

[403] Groups like Dread F were the ones at the table.

[404] And while they were meeting with the respectable people, we adapt, the radicals and militants, we were out there, you know, keeping the pressure on, you know, kept on blocking buses and shutting down buildings and things of that nature.

[405] While Congress listened to testimonies and poured over new drafts of the bill, Adapt was getting impatient.

[406] And in March of 1990, We organized the Capitol crawl.

[407] Access now!

[408] Access now!

[409] There are hundreds of people with disabilities who got out of their wheelchairs and crawled up the steps of the Capitol.

[410] None of them could walk, and so they all just, you know, painstakingly one step at a time.

[411] To highlight the second -class citizenship, you know, that we held.

[412] To just bring away not just to the bill, but again for the ability to be seen.

[413] The ability to have people look at them not turn away, or not look at them in pity or not turn away in disgust, but just to view them as full contributors to the society.

[414] I was one of the ones who participated in that crawl -up.

[415] I went up backwards carrying someone's wheelchair.

[416] And it was very hot, and I got really exhausted.

[417] And so the rest of the way up, I literally crawled up, scooting, you know, up, you know, butt bumping up the Capitol stairs.

[418] It was amazing.

[419] We were crawling in history.

[420] We really were.

[421] We were crawling in history.

[422] After the Capitol crawl, most politicians from both parties supported the bill.

[423] Still, the odds looked pretty grim.

[424] 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.

[425] He had one election in 1988, and he had been vice president under Ronald Reagan.

[426] Compared to his predecessor, Bush had promised, I want a kinder and gentler nation.

[427] Now, the White House was really split on the ADA.

[428] He had some advisors who were vehemently, strongly opposed to the ADA, and there were others who liked it.

[429] And the ones who liked it succeeded because they realized that George H .W. Bush could understand disability.

[430] There was disability in this family.

[431] Look, Barbara Bush's big issue was illiteracy, teaching people to read.

[432] Hi, I'm Barbara Bush.

[433] Did you know illiteracy in this country could be eliminated by the year 2000?

[434] the key is to get our young people reading now.

[435] What people didn't know was why, the reason.

[436] Well, it turned out one of her sons, Neil had dyslexia.

[437] And Barbara Bush had spent a lot of time when he was in school helping him read.

[438] And she was told the Bushes were told, oh, he'll never go to college.

[439] He did, but they had dealt with his learning disability.

[440] George and Barbara Bush had dealt with tragedy when a young daughter, Robin died.

[441] She was three.

[442] She died of leukemia.

[443] So there was disability in that family.

[444] They understood it.

[445] This is what drove most of the ADA's biggest political allies, personal connections.

[446] Every family deals with disability.

[447] It doesn't matter if you're a Republican or Democrat.

[448] And that's what helped push it over the finish line.

[449] So on July 26, 1990, George Bush signs the ADA into law.

[450] There's this joyous bill signing.

[451] I believe it was a really nice day.

[452] Out there in this splendid scene of hope.

[453] spread across the south lawn of the White House.

[454] I remember George Bush, seated at a desk, and signing, and all these activists and senators are surrounding him.

[455] And George Bush says, I now lift my pen to sign this Americans with Disability Act and say, Let the shameful walls of exclusion come tumbling down.

[456] Finally, come tumbling down.

[457] God bless you all.

[458] Everybody knew this was a big deal.

[459] This was a really big deal.

[460] I was elated.

[461] It was like, wow, this is a whole new error for people with disabilities.

[462] I thought that things would just change.

[463] Life after the ADA when we come back.

[464] Hi, this is Damien calling from Sydney, Australia, and you're listening to NPR through life.

[465] I love the show.

[466] I listen to it as soon as the episodes come out.

[467] Thanks so much for your work.

[468] on the TED Radio Hour, MIT psychologist Sherry Turkle, her latest research into the intimate relationships people are having with chatbots.

[469] Technologies that say, I care about you, I love you, I'm here for you, take care of me. The pros and cons of artificial intimacy.

[470] That's on the TED Radio Hour from NPR.

[471] Part 3, ADA Generation.

[472] The memories that I have, is definitely post -ADA with going to school a year later after this passage, you know, that's been my life.

[473] You know, so I really don't know a world really without the ADA.

[474] My name is Baila Thompson.

[475] I'm a social worker, activist, and writer, consultant in Winsborough, South Carolina.

[476] Baila is the third person you met at the very beginning of the episode.

[477] When I was born, they gave me the expectancy of, four to eight years to live.

[478] Luckily for me, my mother is an LPN, and she noticed that I wasn't as active in utero and moving.

[479] So they really allowed the doctors to start to suspect that, you know, something may be going on, and I was diagnosed with osteogenesis imperfective.

[480] Vylusa was born in 1985, with what's known as brittle bones disease.

[481] She remembers going to the doctor as a kid, a lot for surgeries or broken phones.

[482] So my childhood is kind of a mix of, you know, medical stuff mixed in with kind of normal childhood stuff.

[483] Because she started school soon after the ADA passed, she was one of the first to reap its benefits.

[484] So I've always, you know, in K -12, I had an aide, an aide that helped me get to her from class and so on and so forth.

[485] When I got to middle school, when we had kind of these heavy books and lockers, I was given the ability to have a set of books at home and a set of books at school, so I have to lug them around in my backpack.

[486] So I just feel very fortunate that my needs that I had as a disabled student was there from the beginning, like the moment that I started school in kindergarten.

[487] It was just something that I thought everybody had until I realized that it wasn't the case.

[488] I was.

[489] I was a I was a student in what we call mainstream classroom, which is the quote, quote, regular classes.

[490] And there was maybe a handful of us that was in mainstream, but everybody else was under the, you know, quote, quote, special education classes.

[491] And in some ways, created this what we call in the community a supercript dynamic of, you know, you're a disabled student, but you're in mainstream classes with your neurotypical or able -bodied classmates, or at least perceived to be neurotypical or able -bodied class.

[492] classmates.

[493] A super -crip is a common stereotype that paints someone as some sort of heroic figure who overcomes their disability or defies the odds in some inspiring way.

[494] And you are kind of upheld in a way that the students who are not in those classes were not.

[495] So, you know, it just really created this separation of disabled students by, you know, the classes there were in.

[496] Even So we were all under the special education umbrella.

[497] But it was this hierarchy that existed.

[498] You know, it just really created that us versus them dynamic that should not have existed.

[499] It was just very disturbing things to hear educators or, you know, teachers' age say about another student in front of a student, them wondering why they're even bothered to be even brought to school.

[500] Even as a kid, I knew how they were talking about the students weren't okay.

[501] I can only imagine the things that are said, you know, in the teacher's lounge.

[502] While Vilissa was getting the resources she needed in school, the world outside was trying to catch up.

[503] The ADA passed in 1990, but there was a multi -year window to implement accommodations, things like curb cuts in sidewalks, teachers' aides, braille signage.

[504] So cities, schools, business owners, they have.

[505] had to figure out how to make all this happen and how to pay for it.

[506] You know, the ADA is basically an unfunded mandate, and it's those of us with disabilities who are the watchdogs.

[507] And, you know, why should it be that those of us who are oppressed have to be the one to, like, continuously fight, you know, for, you know, rights and to make people do what the law says that they should have to do.

[508] The ADA is one thing.

[509] It does one thing in an extremely important way, but it's a civil rights law.

[510] It's not self -executing.

[511] You have to go out there and make it happen.

[512] You have to file complaints and, you know, talk entities into complying and file lawsuits.

[513] You have to use it, you know, it's a tool.

[514] I think the thing that angers me so much is a price is put on the freedom of people with disabilities, or prices put on the rights of people with disabilities.

[515] Because of the way the law was written, there was no ADA police and no ADA bank account.

[516] 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 a law.

[517] A lawsuit to get a ramp here, a petition before the school board to get large print textbooks there.

[518] All fights meant to make it possible for disabled people to live fully in society, to be seen in the world.

[519] But the ADA didn't solve these problems overnight, or even 30 years later.

[520] You can go into a doctor's office and still not have access to accessible, examining tables, accessible scales, things of that nature.

[521] When I go to the emergency room with my wife, okay, she's deaf, we still have to fight to get an interpreter.

[522] Even though these fights continue, the movement itself has evolved.

[523] And Joe Shapiro says so has the mindset.

[524] Before the ADA, a lot of people with disabilities were used to fighting for what they could get.

[525] Now the ADA generation, the people who grew up protected by the ADA, they have much higher expectations of the promise of the ADA.

[526] They expect full opportunities to everything in American life, jobs, access to transportation and public places to school.

[527] And the ADA has chipped away at the long -standing stigma, changing the way people relate to their disabilities and themselves.

[528] So younger people are much more likely to say they have a disability and to claim a disability as an important part of their identity and claim it with pride.

[529] Younger people have a broader definition of disability rights.

[530] 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.

[531] Identity is something Vilissa thinks about all the time.

[532] She's now a social worker and runs a blog called Ramp Your Voice.

[533] Where I can talk about disability from an intellectual lens from different angles that matter to me, whether it be politics, health care, sexuality, sex, gender, education, entertainment.

[534] I can just talk about what I see in the world around me. Like for me, I navigate this world as a black disabled woman.

[535] You cannot force me to just focus on my disability and not my blackness of womanhood, particularly being a black woman from the South, especially.

[536] You can't do that.

[537] But she wasn't seeing that representation in the community.

[538] So she launched the hashtag, disability, too white.

[539] to shine a light on who gets seen.

[540] You know, the ones that get the most attention.

[541] You know, we're talking about beauty and sexuality, it's white -to -same women stories and experiences that get seen more.

[542] It went viral, and when things go viral, there's praise and there's backlash.

[543] White -disabled people are upset.

[544] And honestly, that was the first time in my life that I was called the N -word.

[545] And I was called the N -word on Twitter for a good 24 hours.

[546] And it really showed me that, A, I struck a nerve.

[547] B, the hashtag had meeting.

[548] And being called it in the word for that long by white civil folks who don't want to recognize that they have white privilege and can oppress people of color, just really showed me that we are long overdue for these type of conversations in the community.

[549] And I think particularly for activists of my generation, Gen X, and then those coming up behind me, I think we are the ones that are really forcing the community to have these honest conversations.

[550] You were four or five years old when the ADA was passed, and that was 30 years ago.

[551] You know, in 30 years, what do you want that five -year -old kids living with disabilities life to be like?

[552] I would like for the community to look less white.

[553] I would like for the stories that's told to be less white.

[554] I would like for disabled students, disabled children, especially of color, to see themselves more in their schools, in their communities, on TV, you know, online, you know, elsewhere.

[555] They don't have to hunger for that so that the children of today don't have to go without those stories, those faces.

[556] that someone listed.

[557] This is one part of the struggle for visibility that the younger generation is fighting for today.

[558] Another is something that the disability community has been fighting for since the very beginning.

[559] Keeping people out of institutions.

[560] We're living with a legacy of institutionalization in the U .S. 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.

[561] The ADA has intersected with this issue through the Olmstead decision.

[562] Olmstead v. LC is the groundbreaking Supreme Court case in which two women with intellectual disabilities and mental illness diagnoses challenge their institutionalization.

[563] 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.

[564] This was a big win.

[565] That decision has spurred a shift in how much federal money goes to institutionalization versus community supports.

[566] Now, more than 50 % of federal money is now spent on community living opportunities rather than institutionalization.

[567] But that's 30 years later, and it's still only 50%.

[568] There's so much further that we have to go.

[569] I mean, this is the age of COVID, and we're seen as disposable or expendable.

[570] I keep thinking about what happened to Michael Hickson in Texas, the disabled black man who was denied COVID -19 treatment.

[571] He called COVID -19 in a nursing home was sent to a hospital.

[572] The doctor decided that specifically because of his disability, that he had no quality of life.

[573] And so they refused to treat him for COVID -19.

[574] They put him in hospice and, you know, withheld food and liquids, and he died.

[575] So we still have a long way to go in society accepting us as people with disabilities.

[576] We talk about police brutality.

[577] Half of the folks murdered and brutalized by police are people with disabilities.

[578] You know, there are laws.

[579] in place and whatnot.

[580] 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.

[581] disabled people are the largest minority group in this country.

[582] And by you resisting, you're saying that you don't care about the participation of the largest group that has power, that has buying power, it has boarding power, you know, that have all these things that can shape society.

[583] We have, you know, such enormous exclusion still to deal with, which is rooted very much in poverty and in racial injustice, that the great message of the ADA gets a little bit, I think, camouflaged and overshadowed by these remaining challenges.

[584] But I do hope that the media attention is not only on, you know, 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.

[585] You know, the really transformative aspect of the ADA, I think, is about making it possible for people to be out in the about in the world and have a right that they can assert in a lot of different situations.

[586] And by doing that, people are more likely to be feeling that they are part of their communities, that they belong, and they're more likely to be perceived that way socially.

[587] 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.

[588] You know, overall, it was a life -changer.

[589] I mean, I'm talking to young, disabled people who never knew a world before the ADA.

[590] Never knew a world.

[591] If the ADA had been around back then, I would probably be a doctor.

[592] But, you know, it was a blessing in disguise because I got to do, I think, so much more with my life.

[593] You know, a doctor might see, you know, over a career, a few hundred or maybe even a few thousand patients.

[594] By the work that I've done, I got to help millions upon millions of Americans.

[595] That's it for this week's show.

[596] I'm Miranda Fetatah.

[597] I'm Ramtin Adab Lui, and you've been listening to ThruLine from NPR.

[598] This episode was produced by me. And me and Jamie York.

[599] Lawrence Wu.

[600] Lane Kaplan Levinson.

[601] Julie Caine.

[602] Kea Miyaka -Nates.

[603] Natalie Barton.

[604] Fact -checking for this episode was done by Kevin Vogel.

[605] We'd like to give a special thanks to Sarah Luterman, our editorial advisor on today's episode.

[606] Also, thanks to Alice Wong, Pat Wright, Arlene Meyerson, Chai Feldblum, Marilyn Golden, Lex Frieden, and Heather Watkins for their help shaping today's show.

[607] Thanks also to the Disability Rights Education and Defense Fund.

[608] and to the Adapt Museum for some of the footage you heard.

[609] And finally, thank you to Camille Smiley and Anya Grunman.

[610] Our music was composed by Ramtin and his band Drop Electric, which includes Navid Marvie, show Fujiwara, Anya Mizani.

[611] If you have an idea or like something you heard on the show, please drop us a line at throughline at npr .org or hit us up on Twitter at Thurline NPR.

[612] Thanks for listening.

[613] Support per NPR and the following message come from the Kauffman Foundation, providing access to opportunities that help people achieve financial stability, upward mobility, and economic prosperity, regardless of race, gender or geography.

[614] Coffman .org