Factually! with Adam Conover - The Extraordinary History of the Disability Rights Movement with Judy Heumann

Episode Date: November 20, 2019

Disability rights activist, Judy Heumann, joins Adam this week to discuss the mentality shift and history of disability rights and the Americans with Disabilities Act, acts of protest and the Ugly Laws. This episode is sponsored by Atlas Coffee Club (www.atlascoffeeclub.com/factually), KiwiCo (www.kiwico.com/FACTUALLY), and Acuity (www.acuityscheduling.com/factually). Learn more about your ad choices. Visit megaphone.fm/adchoices See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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And, you know, while the Declaration of Independence says all men are created equal, the fine print is always read, results may vary, right? Generations of Americans have had to fight and that have gotten us closer to that ideal. But there's another movement that's often left out when the grand narrative of civil rights struggle in America is told, the movement to secure the rights of Americans with disabilities. Americans with Disabilities. For disabled folks, the barriers to participation and free movement through society are literal. You know, a ramp, an elevator, a sign language interpreter at a public event, or even a sonic chirp at a crosswalk. The literal physical infrastructure of America can make the difference between participating in society and being excluded from it. Look, let me start by giving you a little story from my own experience. A very good friend of mine, Jason Sines,

who's an incredibly funny comic, look him up if you don't know him. Last year, he had a catastrophic spinal injury and now he uses an electric wheelchair to get around. And a couple months ago, we went to a Sparks game here in LA. And by the way, if you're not up on the WNBA, get onto it, incredible basketball,

best ticket in town, check it out. Go Sparks, go Sparks all the way, if you're not up on the WNBA, get onto it. Incredible basketball, best ticket in town. Check it out. Go Sparks. Go Sparks all the way. And so we went to this game together, right? And the way we got there was we met at a subway station in LA. We took the elevator down to the train. We got on the train.

It took us downtown, took the elevator back up, and we went down to the Staples Center. There were curb cuts in the sidewalk. So he was, you know, that took you from sidewalk level down to the street so his wheelchair could get across the street. When we got to the Staples Center, there was another elevator, took us up to the ADA-compliant seating where there was a spot where his wheelchair could sit and we could watch the game together.

Had a fantastic time. Only problem was when the announcer said everyone should get on their feet. He was like, yeah, actually, can't do that part. So one little flaw. But other than that, had a fantastic time. The Sparks beat their enemies. The vile Chicago sky. We all cheered and we all went back the same way we came.

But what struck me as remarkable about this otherwise routine trip to go to a basketball game is that until recently, it wouldn't have even been possible. The Americans with Disabilities Act, the landmark disability rights legislation that mandated all the accessibility improvements that the Staples Center, the LA Metro, and the city of LA built on their infrastructure, well, that was just passed in 1990. This basic experience of just going to a game with my friend probably wouldn't have even been practical or even possible if not for the disability rights movement that culminated in the passage of this law. Me and Jason have

generations of activists to thank for us going to that game together. And still, here in LA, where I live, there are many, many streets, some of them just a couple blocks from me, where there are just narrow sidewalks bordered by foot-high curbs that are impassable to a wheelchair. There are still lots of places in this city that Jason can't even live because they don't have accessibility options, and that's in a very supposedly ultra-progressive city like LA. And look, it's not just wheelchairs. Imagine being visually impaired and trying to take a bus that doesn't have audible location announcements, or being deaf and needing to communicate with a city agency that only does business over the phone, not to mention mental disabilities and others.

It's taken a concerted effort to create changes that allow disabled people to use just some of the basic infrastructure of society, and I haven't even gotten into the issue of bias and discrimination against the disabled, which is rampant. So this is a civil rights movement that is vital and important and deserves more attention, so we're going to give it some today. Our guest today is Judy Heumann. She has been a leading disability rights advocate for decades. She's been on the forefront of this movement. And look, I want to be really, really clear. A lot of times we have this sort of assumption that like, oh, you know, wheelchair ramps, like non-disabled people put those in for the disabled people out of the goodness of her hearts, right? But that's not really how it's worked.

Americans with disabilities have had to fight and push for these rights and accommodations for decades. They made them happen. And Judy is one of them. She is one of the people who has been out there fighting. And look, the stories that she is going to tell you in this interview are going to boggle your mind. I am so, so excited to have this icon of the disability rights movement on our show today. Please welcome Judy Heumann.

Well, Judy, thank you so much for being on the show. Thank you so much for having me. Well, Judy, thank you so much for being on the show. Thank you so much for having me. So you've been involved in the disability rights movement for your entire lifetime, but a lot of folks listening to this are thinking about it for the first time, right? Or maybe they've thought about it a little bit, but this is the first time they're going to, you know, we're really diving into the subject for them. So let's get really, really basic.

What is a disability and how many Americans are affected? So we can start with 56 million Americans have disabilities. Wow, that's a lot. Yeah, according to the CDC, one in four. Now, disability is a very broad category. And if we look at laws like Section 504 or the Americans with Disabilities, the definition around disability is basically if one or more major life activities are adversely affected by things like polio, muscular dystrophy, cerebral palsy, epilepsy, diabetes, cancer. There are multiple sclerosis, Parkinson's, depression, intellectual disabilities. There are many, many, many, many categories. And so when we're looking at issues around disability, the way I prefer to

address it is it's nobody's responsibility to know the labels of the hundreds of disabilities that are out there because doctors and others are coming up with diagnoses and they're putting these crazy labels on people. But at the end of the day, I think for the purpose of this discussion, we're talking about someone with a disability who is being adversely affected, is being directly discriminated against, and the environment that we're living in is not enabling us to be able to live our lives as if we didn't have a disability. I think that's important. And that's a struggle you've been involved in your whole life. Could you tell us, you know, how you came to that work? So I think really, I came to that work out of necessity. You know, there was no, like, flash of light that said my destiny is to do advocacy work in disability. And I had polio in 1949.

So I'm going to be, I can't believe it, but I'm going to be 72 years old. Wow. And I had, I'm sorry, I was born in 47. I had polio in 1949. I was the first of three children. My mother was actually pregnant with my brother in her eighth month of pregnancy when I had polio. And polio is contagious. And so at that point, you were removed from the house and sent to a hospital. And I was in an iron lung, which is a breathing machine for three months, and in and out of the hospital for a couple of years. My parents, I learned, was suggested to them by a doctor

that they put me in an institution because their life would be better if I was not a burden on them. So that was, I think, a real period of time when my parents had to be beginning to think that they had decided that they wanted my life to be like it was, would have been if I didn't have a disability. I don't mean as in denying disability, but rather in saying that disability is a normal part of life and that they saw their role as parents to basically help make sure that I had these opportunities. But that goes to show what people's attitudes were like back then, that it was suggested to your parents by the establishment that, hey, this person would be a burden on you, they'd be better

off hidden away somewhere. I mean, do you feel like we've come a long way since then? I think we've made progress. And I believe that laws like the Americans with Disabilities Act, the Individuals with Disabilities Education Act, Title V of the Rehab Act, most of which your listeners will not know about, but they can go to the Google search and find out what I'm talking about. Google search and find out what I'm talking about. Those laws which prohibit discrimination obviously have been having a positive impact. But the reason why I say we haven't made the progress that we should be making is because in areas like personal assistance. Okay, so I'm what's called a quadriplegic. I can't walk. I can't stand. I can't go to the bathroom by myself. I can't get dressed and undressed by myself.

I can't put my coat on and off by myself. And we're not a huge part of the population, but we are a definite part of the population. And as people are getting older, they are also becoming a part of the population. And we have no uniform laws that provide people with financial support to be able to pay for personal assistance. financial support to be able to pay for personal assistance. Many people in our society who may well need personal assistance in the future don't know what it is, don't understand it, and are not fighting for it. When in fact, everybody in the United States at some point

in their life for a short period of time or a longer period of time may well need personal assistance. Well, and disability rights being something that maybe we should all have an investment in, because as we age, we ourselves may need them even if we don't today. Exactly. Well, speaking about going back to your childhood, you know, your parents, as you said, wanted to treat disability as a normal part of life and for you to be able to have a full life. But I mean, again, you're growing up in the 50s. What were the, you know, what was access like for

disabled people in those years? What obstacles did you encounter? I think it's fair to say everything. Because, you know, visualize using a wheelchair. And, you know, for me, the visualization is not to say, oh, my God, get me out of this wheelchair. I can't stand it, which is what a lot of people think. I could not live my life if I was like you. And it gets back to the point that you were making earlier. Like, when did I become an activist? So all of this gradually came together when I realized that society by itself was not going to make these changes because it wasn't really looking at what the barriers were, nor what the solutions were. They were looking at cost. They were not looking at universal design. They were not looking at who could benefit. And now I'm not talking about

a cost-benefit analysis, because that's what economists want to go look at. And it's discrimination. You don't do cost-benefit analysis. But so I was five years old, and in the United States, you go to school when you're five. So my mother expected nothing from the school. The school was not accessible. Let me be very clear that at that point in time, there were no laws about discrimination against disabled people. None whatsoever? Not really, nothing.

Nothing at the federal level. There was something called ugly laws, which you might really want to look at. What were ugly laws? which you might really want to look at. What were ugly laws? Ugly laws basically said you are ugly and displeasing and they could kick you out if you had a disability. That's terrible. That's the opposite of what you would hope the law to be.

So my mother takes me to school. She pulls my wheelchair up the steps. She tries to register me to go to school. And the principal says, no, I'm a fire hazard. I can't go to that school. But don't worry, because the Board of Education of the city of New York would send a teacher to my house. So I was entering kindergarten. No one came to my house for a year.

Wow. And in the first grade, they did honor what he said by sending a teacher to my house two times a week, once for an hour, once for an hour and a half. That's not, you're not getting much education in two and a half hours a week. You're not getting much education in two and a half hours a week. So for the first grade, the second grade, the third grade, and half of the fourth grade, that was my education. Now, it's not that it was my education. It was the education of many, many, many people. In the United States, we didn't have a federal law that said you couldn't discriminate against someone in the area of education and in any program receiving money from the federal government until 1973.

Wow. And we didn't have an explicit law just on education, which at that point was called EHA, the Education for All Handicapped Children Act, until 1975. And in 1975, the federal government said that there were at least 1 million disabled children out of school. So you figure that's a low figure. And you figure out of school is not just literally not in school, but for me, it's being undereducated, not receiving the same educational services. And travel with me in my neighborhood, we had driveways for cars. So you could push my wheelchair down a driveway,

You know, you could push my wheelchair down a driveway, or you could take my wheelchair, back it up, and go down a step, and then tip it up another step. But you couldn't get on the train. You couldn't get on a bus. Although I shouldn't say couldn't, because I had friends who would basically get out of their wheelchair, bump their asses down the stairs, and ask someone to help bring the chair down and up.

I was never such a brave soul, nor could I do it. I've actually seen, I know a few stand-up comedians here in Los Angeles who get around using wheelchairs and occasionally they perform at venues without ramps. And I've seen, oh yeah, let me hop out of the chair and sort of hump my way up the steps or get a friend to lift me up sort of thing. And in those moments, I'm like, man, that's an indignity, but they're sort of, hey, this is how I get around. I'm sort of used to making do under these circumstances,

but still it should not be that way. Well, I think the other issue is they want to do their craft. And so they have to go through humiliating things that other people don't have to go through. And they have to make a joke out of it. Yeah. But so no buses, no trains, no curb cuts. You go to the movies. They would want you to get out of your wheelchair because they had no wheelchair seating.

Going to the bathroom. Wheelchair seating is just a spot that doesn't have another chair in it. Because you would put the wheelchair next to the other chairs. How hard is that? So the wheelchair would go in the aisle. But let me tell you a funny story. So I moved from Brooklyn to Berkeley to get involved with the disability movement in the Bay Area. And I was one of the founders of a group called the Berkeley Center for Independent Living. And we were an activist, they still are,

an activist organization. So one day, a friend of mine called me and said, we're getting a group of people together to go to Movie Theater X because this particular theater was not allowing people to sit in their wheelchairs. They had to get out and have someone take the wheelchair away. When the movie was over, they would bring it back.

So it meant, A, for many people, they couldn't go there at all because they couldn't transfer. Or B, if they did that, how did they go to the bathroom? Yeah. So we took like three of us in wheelchairs and a bunch of our friends. And we had decided that when we got there, if anything happened, like they called anybody, the police or the fire department, that we would have our friends without visible disabilities start going, shh, shh, shh. So we went to buy our tickets, and they weren't going to sell us our tickets.

We told them they had to sell us the tickets, because they said they were going to call the fire department. And we said, great, go call the fire department. We're going to go start watching the movie. So the fire department. We're going to go start watching the movie. So the fire department came. And when they came over to us, they said they wanted us to leave the movie theater so we could talk. So we gave them our cards because we all worked at CIL. And we said, here's our card. Call us for an appointment. And then people in the audience were going, shh, shh, shh. And so it was disrupting the other clients.

And so the fire department left. But the manager of the movie theater did take seats out. So, I mean, it shouldn't have been a big deal. Yeah. But it was. This is the politest protest I've ever heard. You're just shushing people. Hey, the firemen are making noise.

Shush, we're all trying to watch a movie here. What's the problem? Exactly. But yeah, it goes to show how the most basic things needed to be fought for. It's really striking. And once you have the experience of, you said visualizing, you know, getting around in a wheelchair. I've started doing that myself more recently after, you know, taking more trips with friends and, you know, knowing more friends who get around using wheelchairs and thinking about like, could I do this with my friend who's getting around in a wheelchair? Or if I was in their position, could they get to this store, go to this venue, et cetera?

in their position. Could they get to this store, go to this venue, et cetera. And it's shocking how much you realize, you know, when those accommodations are there, you feel grateful for them. And when they're not, it's almost shocking. Okay. But you know what? You should not feel grateful because if in your community, the way you got from the ground level to the third floor was they hung a rope out of the building and you had to climb to get up to the third floor. When they finally would put steps or whatever so you didn't have to climb, you would not be grateful. And so I think it's a serious issue because... Like this is a basic accommodation, yeah.

It's not even accommodation. Yeah. I mean, when we talk about universal design, so I'll give you another example. LA's got terrible transportation, so this might not relate to you, but in the Bay Area, I'm sorry, in the Bay Area and in DC and other communities, we use the trains.

And New York still sucks in this area. But D.C. and the Bay Area, because of litigation, our metro and BART systems are accessible. So who are some of the biggest users of the elevator? Who do you think? I would imagine folks in wheelchairs, folks who are not able to use the stairs is what I'll say most generally. Okay, so let's take who are not able to use the chair.

Probably some lazy people like me too, but I think mostly, you know, that's the most important group. No, baby carriages. Of course. Yeah. All right. Of course. Yeah, yeah, yeah. And I basically say that the baby carriage industry should be thankful to the disability rights activists. Because if you notice, how old are you? I'm 36.

Right. Because if you notice, how old are you? I'm 36. So, yeah, you would be impacted by this. But probably when you were little, your parents had a little baby carriage. It might have been one that easily folded, that they could carry around. If you look at the baby carriages today. Massive.

They're massive. The only reason they can be massive if people are doing public transportation is because they're curb cuts and they're elevators. instruction. Then when I finally got going to school, I was in the middle of the fourth grade and I wasn't allowed to go to regular classes. So I was in something called health conservation 21 classes. What is that? That's a very good question. Health conservation. 21. 21. Yeah, so they had numbers. Health conservation 21, when you learn the appropriate hand signal, meant it was students who had physical disabilities and had limitations in walking and could need assistance in toileting and feeding and things like that. So we went to school in the basement of a regular school, regular meeting. There were three other floors and no elevator. And that's where I started in a school.

Wow. That's where I started in a school. Wow. The other thing at that time was that the children in my classroom went up to the age of 21. Although the school itself only went up to the age of the sixth grade. Then kids went to junior high school. It's an important point to know because it allows people to see the low expectations. Yeah. So as cities and states like New York and others were being pushed by parents,

again, there were no laws in place. The systems were opening up. But for those of us who had more significant disabilities, we were still in a situation of segregated education that was not teaching us the same academics as children, what we call the kids upstairs, it's what they were learning. Yeah. And my mother and other mothers found out that for those parents that were going to insist that we go to high school, that if you used a wheelchair,

you were going to go back on home instruction. Wow. Is that what happened? No, because my mother and a number of other mothers organized and were able to force the Board of Education to make some schools accessible in each one of the five boroughs. And that's really where I began to learn that none of these things happen by themselves. Yeah. There's always reasons why people are arguing against removing barriers. And we're talking now about physical disability, but through the interview, we need to discuss other groups.

Absolutely. I just want to highlight how much your life from the beginning was shaped by activism, right? That your parents saying, no, we're not going to send her to an institution and, and forcing your way into this school, your parents being activists to get you organizing, to get you just a high school education is every step of the way from, from birth. It's your, your fighting to make a space for yourself.

I know that that's something that still happens a lot today. Yeah. Parents. So, I mean, another very important point is most people are not born with their disability. Do you have a back problem? No, I'm just stretching. I have a stiff back sometimes. Because back injuries are one of the largest reasons why people go on social security disability. Oh, man. Because of back injuries, just a little point. That's why I'm taking care of my back.

That's why I'm stretching during this interview is to try to make sure that nothing develops into a more difficult problem, you know? Yes. problem, you know? Yes. Anyway, I think parents today, in spite of the laws that we have, in many cases are still having to really struggle with the public school system and the private school system. Yeah. Still a huge barrier in not believing that all children can learn. Yeah. And not investing in a way to help ensure that students with intellectual disabilities and emotional disabilities and who are blind or deaf or have various forms of physical disability, where there is an expectation that all children can learn,

we're still really fighting for that. And I know, speaking of schooling, that your experience trying to become a teacher led to your own activism. Can you tell me about that a little bit? Just tell me that story. Okay, so that's an interesting story. I decided when I was in high school, and I don't exactly know why, that I wanted to be a teacher. And I was now in high school and homeroom, all the kids in the homeroom had disabilities. And I started talking to my friend, you know, I guess when I was a junior, about the fact that I was interested in going to college and becoming a teacher.

My friends basically said to me, don't tell people you want to be a teacher. Why? There was an agency and is an agency called the Department of Rehabilitation. It has different names in different states. called the Department of Rehabilitation. It has different names in different states, but it's basically every state has one of these state agencies, which is funded 78% by the federal government, 22% by state government. At that point, they said to me, if you want to do a job, which is not kind of a typical job that people at my level of disability were doing, if you said you wanted to be a teacher, they would say, no, they wouldn't support you in school. Wow. as speech and theater. But I was going to then decide

to take education as a minor. And this was in the 60s. And in the 60s, you know, the baby boom era was really moving forward. And what was happening was you could get a teaching license if you took, I think it was three or four courses. And so I did.

Nobody asked me why I was taking education classes. I mean, literally nobody. Yeah. But what had happened also was I had called the American Civil Liberties Union when I was like a sophomore in college and said, I'm interested in being a teacher. I don't know anybody else who is a teacher who got their license using a wheelchair. I'd like to speak to you about this. And they said to me, no, just go through school,

do what you need to do. And if you have any problems, call us back. So I did that. And when I graduated, you had to take three tests in New York. Again, there were not really many laws at that point. I had an oral, a written, and a physical. They were all offered in completely inaccessible buildings, like multiple flights of stairs. And my friends carried me up and down. I passed the written, I passed the oral. I failed the medical. And then, you know, basically, it was really a choice that I had to make. Was I going to try to sue to address the issue? And did you?

I did sue, but it was a very, first of all, my parents were working class. My father had a small butcher shop. We didn't have lawyers, really, in the family. We had butchers and teachers. And so, okay, this is all true, just to let the audience know I don't lie. I don't think anyone was doubting you, Judy. I'm joking. That'd be pretty cynical to listen to this interview and be like,

yeah, I think she's making it all up. No, but I say that because it's kind of funny. It was like the stars were aligned. So a friend of mine at that point in college was a stringer for the New York Times. He had a disability and he spoke to me about what was going on. And he spoke to one of the reporters at the New York Times. And on a Wednesday, they did an article on how I'd been denied my license because I couldn't walk. That was a Wednesday. On Thursday in the morning, I got a call from a man named Roy Lucas, who had read the article, and he was

writing a book on civil rights. And so he called me to talk to me about the experience. And I thought, this guy had no idea who he was. He turned out to be a huge civil rights lawyer and did some major cases before the Supreme Court. So at the end of the interview, I asked him, would you be willing to represent me? And he said, yes. And I guess that same day that he had called me, there was an op-ed in the New York Times called Human vs. Board of Education. Also talking about how the system needed teachers and they should hire me. Yeah. And then I got a call from the Today Show.

You were going viral in the 60s. This is the 60s version of going viral. Early 70s. That's why I'm version of going viral. Early 70s. That's why I'm telling the truth because it's a joke. But I could never, how could you ever believe this could happen? So on Friday, I did the Today Show with someone from the Board of Education. And then a customer of my father's came into the store who was a lawyer and he said he'd volunteer his services. So Roy Lucas and this other gentleman became my attorneys.

And we sued the Board of Education. Wow. And we had a woman by the name of Constance Baker Motley, who was not only a civil rights attorney and had been involved with Brown versus the Board of Education, but she was the first African-American woman to serve on the federal bench. And when we went before the court- She was the judge. She was the judge. And so we actually settled out of court because she told the board that she encouraged them to do another medical exam. So they did. And so I was granted my license.

And then it took a good number of months for me to actually get a job because so many of the schools were not accessible. Right. get a job because so many of the schools were not accessible. But I was given a job offer to work in the same elementary school that I had gone to. And the first classes I taught were in special ed, the ones I'd been in, even though I had a regular ed license. And I taught in that classroom for, well, taught in five classes of that. I was kind of whatever the teachers didn't want to teach, I was teaching. Incredible. I mean, that story, it brings a tear to my eye, frankly, to hear it come full circle like that. And that was just the beginning of your career as an activist, right? Right. Well, I have so many more questions for you and I want to hear so many more of these

stories, but we have to take a quick break. We'll be right back with more Judy Heumann. so we're back with judy human i have so many more questions about your career as an activist uh for the rights of disabled folks in this country uh tell me about what was section 504 and tell me about the section 504 sit-in what was that okay so in 1972, there was a law that was being reauthorized called the Rehabilitation Act of 1972. And President Nixon vetoed it. that piece of legislation, there was the general part, which was reauthorizing the agency that had paid for me to go to college, the Department of Rehabilitation. And there was a provision in there that was new called independent living. And there was something in there called Title V. And Title V is basically a package of legislative provisions that specifically focus on issues around anti-discrimination

in the area of disability, the federal government's employment system, obligating the federal government to affirmatively hire disabled people, a number of other important areas. So the Section 504 was very similar to provisions in the Civil Rights Act of 1964. And what it said is,

if you're an entity that receives money from the federal government, you may not discriminate based on disability. It was like a 42-word law, provision of law. And it was vetoed, as I said, by Nixon. At that point, I was in New York and we had a couple of organizations who came together and four days before the election,

we had a demonstration in Manhattan which brought together about 50, 60 people. I think one of the other important issues is where other groups could pull together massive numbers of people. It was always difficult to bring massive numbers of disabled people together. Yeah. Because at that point, you didn't have curb cuts, you didn't have buses, you didn't have trains. It's a little hard to get to the protest if your wheelchair can't make it down to Broadway, you know?

Exactly. And one of the other important things that was going on at that point, and really I think has propelled our movement, is that we began not to only work with people who had our type of disability. disability. Because really, until that point, much of what was being done was focused on organizations that were looking at cure. So if you look up something called the Muscular Dystrophy Telethon, that was run by Jerry Lewis. Right. I used to watch that as a kid. Okay. So the disability community hated it. Because it really, you know, it talked about people in the most demeaning way. It talked about people like dying and we would joke, not so much joke really, and say, well, go out and try to get a job the day after the Jerry Lewis telethon, who was really going

to want to hire you. Right. It's this approach of we need to cure these folks of their ailment that's making their life so terrible. Not, hey, we could all make sure together that they're able to have a full life by making sure they can move around their community and participate in society just like any of us.

Instead, it's like, oh, we need to fix them or nothing. Exactly. Yeah. Terrible point of view. Exactly. So we had a demonstration four days before the election for Nixon where we were protesting the veto. We had 50 people.

We shut down Madison Avenue. Wow. We had 50 people. We shut down Madison Avenue. Wow. And first we shut down all four roads, you know, the way they crossed. And then it was a little bit scary because the trucks and stuff were not very happy. And so we moved back and just covered across one street. But nonetheless, the whirlybird, which some people my age would remember, and it would give reports on what was going on in traffic, talked about how there was a really terrible traffic jam in Manhattan

because these people in wheelchairs had shut the traffic down. How long did you shut it down for? We were there about an hour, an hour and a half. Okay. And then we went into Nixon headquarters and we took over Nixon headquarters. Wow. How long did you take over that for? A couple of hours.

They called in a bomb threat and they did. They called in a bomb threat. And they did. They called in a bomb threat. And, you know, for a couple of seconds, we thought maybe there really is a bomb threat. And then I was talking to some of my colleagues and I said, well, do you notice that nobody else is nervous? It's probably not really a bomb threat. So I think it was like 11 or something and we left. They were trying to get you out of there by phoning in a fake bomb threat? Like, get these disabled folks out.

We'll tell them there's a bomb in here. Exactly. Ridiculous. And then the Monday before the demonstrations, we, I'm sorry, before the election, we brought together another group of people. But this time we had a couple of disabled veterans who came with us because we'd gotten hardly any press when we had the first demonstration. And so the day after the demonstration on Thursday, Friday, I had called McGovern's campaign and I said, this is what's going on. Can you please find us some disabled veterans? We're going to have another demonstration on Monday.

So they found us a guy named Bobby Mueller. And if you look up Bobby, you'll see he was a big anti-war activist and he was a paraplegic. And he brought another guy and we marched against traffic on Times Square back to Nixon headquarters. But then there were other demonstrations the following year in Washington, D.C. And there were other demonstrations the following year in Washington, D.C., when Nixon finally signed the law. So Section 504, as I've said, prohibits discrimination against disabled people if the entity received money from the federal government. So that meant schools, transit systems, hospitals, et cetera. That's a pretty basic protection. Basic, but as you notice, it's only federal financial assistance, which meant it didn't

cover the movie theaters, the restaurants, anything in the private sector. It was just government. A lot of work was done between 1973 and 1977. There was a very strong team of people from the Office of Civil Rights in the Department of Health Education and Welfare. on welfare, they were basically looking at how do you implement this 42-word law which says you can't discriminate? What does that really mean? If you looked at, for example, the demonstrations that Rosa Parks, that the demonstration came about, as a result of her being unwilling to sit in the back of the bus. The problem was discrimination.

People not wanting to sit in a bus with people who are black. Yeah. And in our case, that had been resolved. But it wasn't going to be enough to say that a bus with steps, all you had to do was say, oh, you're welcome on board. Right. You can't just change minds. You need to change the physical reality we live in. Exactly. You need to change the schools and the universities and the hospitals, on and on. And you needed to change them,

not just in services, but you needed to change them in employment practices, for example. So a guy named John Wodatch led the work that was being done. He traveled around the United States to get a better understanding of not only what the barriers were, but to also begin to discuss solutions. And in that period of time, a set of proposed regulations were created, which were many, many, many pages looking at things like reasonable accommodations. So was the law going to require, for example, that all universities on the day of the regulation being signed would have to be accessible? That was not going to happen. I mean, it'd be great if it could happen, but it couldn't happen, obviously. needed to be done to enable people to get services and to obligate, in this case, universities on what they would need to do if they were renovating a building, making a new building. If students who are deaf or blind had various other forms of disabilities would be coming to,

would have been accepted into school, what are the accommodations that they needed? What are the accommodations that they needed? So there was a lot of work done. And when Ford left, he had not signed the regulations. A final set of regs had come out, but he refused to sign them. And so a group of us with disabilities had begun to work on the Carter campaign. And we had been given assurances that the regulations would be signed. But when Carter was elected and Secretary Joseph Califano was appointed,

he didn't know what the regulations were. But the bigger problem was he had been a lobbyist for different entities that were going to have to comply with. And so an organization had been created in 1975 called the American Coalition of Citizens with Disabilities. It was a cross-disability organization. So it had a president who was deaf and blind people on the board and people with different types of disabilities, which was really very important. And one of the main purposes the organization had been created was to address the Section 504 regulations and other issues. And so in about February of 1977, we had a board meeting and we made a decision, Carter had been in office like two months, that we were not going

to allow this to prolong itself, that we were afraid that they were going to try to weaken the regulations, which obviously were already a compromise because what the disability community wanted and what the impacted community wanted was very different. Yeah. And so basically we said if the regulations were not signed by a certain day, we would have demonstrations around the United States, which is what happened. Wow. And so what did those demonstrations look like?

Well, the first day, we had had a committee. And we had a committee of, I think it was the Committee to Save 504. And so we had people in the Bay Area working on that. We had set up a subcommittee, and that subcommittee had gone and met with people from the Health, Education, and Welfare Regional Office because we had asked had a demonstration outside the building with a couple hundred people, um, and it was again, cross disability and major leaders in the non-disability community. And we went in to have our meeting. And when we went in to have our meeting. And when we went in to have our meeting,

the regional director literally knew nothing about the issue. It was so, again, it was like, okay, you want to take over a building because this is a problem? that they don't know what they're doing. It was like the perfect example. So basically a few of us asked if other people would stay. And ultimately about 150 disabled people stayed in the building for 26 or 27 days. You occupied the building for 26 days. 100 disabled

folks. 150. 150. Incredible. We were on one floor, but we wouldn't leave. We were lucky because the mayor, Moscone,

was supportive. People in the Bay Area and California really understood what we were talking about. So Governor Brown was governor at that point also. And later governor again, yeah. And later governor again. But the Department of Health from the state of California sent down mattresses that we could use to sleep on.

The Black Panthers and Safeway and other organizations provided food. It was medical services that were provided because it was a difficult situation, but it was amazing. And if you look at something called The Power of 504, it's on YouTube, it's about 18 minutes,

and it will give you a much better realistic visualization of what happened and then there's something called drunk history and they did a piece on this called drunk history 504 i know drunk history that's my field now you're talking about what i know yeah so the woman who played me is a woman named Allie Stroker. Allie Stroker is the first wheelchair-using woman to perform on Broadway. And she just got the Tony Award for her performance. Yeah. So anyway, those are good historical pieces to look at.

And we sent about 20 people from the Bay Area, myself and 19 others. We went back to Washington to join people from the American Coalition of Citizens with Disabilities and some other people and basically held demonstrations, had meetings in the White House, had meetings with members on the Senate and the House side, and the regulations were signed while we were there without any changes. Amazing. I just want to say how much this highlights how difficult and dedicated the work of activism is, because you're talking about, hey, we're not just showing up in the streets one day with some cardboard signs. It's dedicated work, organizing, creating committees, subcommittees, making

connections in the bureaucracy locally and nationally, and pushing the agenda forward, forward, forward until you can finally get these changes made with great success in this case. But the work involved is massive. And I want to say that one of the very important parts of this was the disability community needed to be able to become very educated on the fundamentals of what the regulation should look like. We needed to be able to argue toe-to-toe over the course of those years on what the regulation should look like. When they were sent out in draft form through the Federal Register,

we had to have people from all over the country commenting on those regulations. So it was not only that we had to have a lot of work and effort to do the demonstrations, but we had to have people who really were thinkers, who could really ensure that we were developing regulations that would be not only quality, but enforceable. Because enforcement is such a critical issue with any piece of legislation. And you were designing for the first time, these regulations that would allow folks in wheelchairs, folks with sensory impairments, folks with all different types of impairments to, uh, to participate in society for the first time that, or not for the

first time, sorry, but you know time, sorry, but, you know, in a way that, you know, all those issues that you faced a school with only stairs, right? Like, you're having to figure out, well, what does an inclusive version of that school look like? I mean, that's a hard question to answer. And I think one of the important parts of Section 504 and the Americans with Disabilities Act is moving not just towards making the built environment and the technology environment accessible, but also looking at what is supposed to be going on in those buildings. So it's not just that the building is accessible. It is also that teachers like myself, students, others, we're going to be able to learn.

Like, why are you going into that building? It's like you go into a museum. It gets money from the federal government. There are changes that you can see that have happened regarding where signage is posted. And so there have been many important changes that have come about. But one of the obvious problems was that while Section 504 was and is very important, it also, as I was saying, did not cover the public sector. So it took another 13 years.

Did not cover the private sector. I'm sorry, didn't cover the private sector. Sorry. No problem. Took another 13 years to be able to get the Americans with Disabilities Act passed. The ADA really benefited from the amount of work that had been done in developing the 504 regulation. Yeah. Because many of the hard questions had been asked and answered, which was very helpful. But when moving into the private sector,

the Chambers of Commerce and the Public Transit Association and the hospital associations, moving forward with the Americans with Disabilities Act, we were having to contend with not only creating language that would be powerful, but we also were going to have to contend with many organizations, lobbying associations, that were going to be fighting against ADA like they had against 504 and other provisions of law. And this law really strikes me as, you know, the Americans with Disabilities Act, because it's compelling private businesses in that way. And yeah, I can only imagine the amount of pushback you would have gotten against that from chambers of commerce, from realtors, building associations, construction, all those sorts of factors that say, hey, it's going to cost us money to put in ramps and et cetera, et cetera. But at the same time, this is almost equivalent to the public accommodations provisions in

the Civil Rights Act that say, hey, if these are, even though they're private businesses, if they are serving the public, they can't discriminate against people of color in the same way these are private businesses that can't discriminate in how they are built against folks with disabilities. That's a, you know, we often think of the ADA as like, oh, that's the thing that says you got to put ramps in. But no, this is an essential bit of civil rights legislation akin to all those others. Exactly. Yeah. akin to all those others. Exactly.

Yeah. And I think we're still today having to do a lot of work, for example, with employers to really get these provisions effectively implemented. So Title I of the Americans with Disabilities Act is administered by the Equal Employment Opportunities Commission. And, yeah, I think right now employment is one of the biggest barriers. We still have about a 70% unemployment rate of disabled individuals. Wow, 70%.

Yes, it's huge. And you're saying, again, one in four Americans has a disability of some kind. Is that the number you gave me earlier? So that's a massive rate. Right. Now, in the one of four, not everybody is of working age. Ah, I see. You'll have the population below 18 and above 70. So it's not 100% of that group. But one of the good things that's happened over the years is now the Department of Labor collects labor statistics on disability, which was never collected before. So what I believe is very important as a result of the fights that have gone on for various pieces of legislation is that as disabled people, we have seen that we should not be ashamed of who we are. Yeah.

That we need to be proud of who we are and we need to fight for our rights the same as others, and that working in coalition is very important. So groups like the Leadership Conference on Civil and Human Rights, which before 1980 really did not include disability in the work that they're doing, has become much more engaged with the disability community. So disability is a part of their mission. And I think it's very fair to say that people are still ashamed and stigmatized by their disability. If they can hide it, they may well be doing that. Another issue is people may well not know that they do have a disability. Because as I said, it's such a broad definition. I was talking with Google the other day. And one of the things I was saying with them is this, you know,

they have a lot of accessibility features, partly because the law requires it. And partly because I think they've accepted it and are working on it. But I am sure that many of their customers who may be older and low vision or hard of hearing or whatever may not at all be aware of the functions that exist that they could be benefiting from. So looking at ways that companies who are doing good things, the Microsofts and others of the world, also look at what they can do to help the intended audience really provide information to the intended audience frequently much broader than people think. Here's something that you can make use of should you want to. much broader than people think.

Here's something that you could make use of should you want to. Here's a feature on your phone that, you know, oh, we've noticed you're using it this way, but take a look at this feature that we have, that sort of thing. Exactly. Yeah.

Yeah. Yeah. Because it is interesting that it's such a, it is such a broad definition. I've spoken on the show before that I was diagnosed with attention deficit disorder at a pretty young age. And by the time I got to college, I started thinking of it as being something that was getting in the way of my learning. And there was a time that I sort of said, I think I'll label myself as learning disabled and I'll think about it in that way.

And I sort of engaged with my school in that way a little bit, organized a group of students together and talked to a group of professors at one point. And then after a while, I sort of, you know, I'm not sure how to think about it if I, if that was truly a disability that I compensated for, or if I was perhaps over-medicalizing myself, you know, it's, you know, it's a complex thing. Either of those things could be true. Yeah. However, you still have a disability. How do you mean?

Expand. Well, if you have a learning disability and a learning disability known by a prospective employer could result in them not hiring you, could result in you're needing an accommodation that you're afraid of asking for or that you ask for that you're denied. Not everyone's disability is of the same significance. Yeah. Right?

You're going to be able to go about things, doing things that I can't without various changes in the environment. But nonetheless, I'm glad you really brought this up because it's the people like you in the United States that we really want to understand, want you to understand that you can be a part of this community. Yeah. And you don't need to feel ashamed. And you need to see that you're speaking up about both what you need and what you don't need. Because sometimes people will be looking at accommodations that one doesn't want and one doesn't need. But the bottom line is, I don't know how many people know.

Did you say you had ADD? That's what I was diagnosed with. Yeah. Yeah. At the time they called it ADD. Now they call it ADHD. But. Okay.

So have you ever done a program on ADHD? Never done it on our show. No, probably should. But again, my relationship with that term is so complex where, you know, I used to define myself by it. And now that I'm older, I do a little bit less often, but then it crosses my mind like, oh, I think it might still be a part of me, but it's something I've learned to just sort of weave my compensation for it into my life where it comes up a little less often, but it's still there, you know? I mean, it is still there. And

I think it's important to discuss it because, you know, when you talk to disabled people or some disabled people, they'll talk about the different parts of their life. So I did two programs. It was in June of 2017. One was a lesbian, disabled Jewish woman who was a writer for plays. And the other is a gentleman who was a gay disabled man who lived in orphanages. And both of them, we did separate interviews, both of them talked about the difficulty

of bringing their whole self into their life and being able to present their whole self, not just having to divide themselves up. And I think that's really what you're talking about is your ADHD is not who you are. It's a part of who you are. And it will affect you or not affect you on a day-to-day basis. And part of what you've been able to do is because you're older and you've had various accommodations and you've learned how to do things in an adaptive way. And the question I think to think about is, at some point, if you feel like you need something based on your disability, are you ashamed of asking for it? Or are you now in a position because you're running this program

that you can make things happen because you don't need to ask other people to do something. You're in charge and that's very important. And so anyway, when we talk about one in four, there you are disclosing on this program, which I think is really important because there are hundreds of thousands of disabled people who have not disclosed for various reasons. And I'm not saying it's a negative thing at all. I mean, it's negative to the extent that when you think about 56 million people and you think about,

I mean, obviously we're not all the same, we're politically not all the same, but when the campaigns are moving forward, what are the 12 current candidates running for president? What do they say on disability? Nothing. What is your city council? Some of them have come out with platform.

Okay, sorry. No, no, no. But you're not aware of that. Yeah, it doesn't come up in the debates. Exactly. That's a very important point. So some of the disability groups are really pushing this issue. The DNC has a committee on disability that's very active, working on many things. But I guess as we're looking at winding down in the program, for me, I hope what this piece does is educate listeners who may not have thought about some of these issues before.

And for those who have disabilities, to feel like they can come out of the closet. I mean, just talking to you changes my self-conception a bit, right? Because I didn't start this conversation thinking that this would be a community that I could include myself in. And then talking to you changes my self-conception a bit, right? Because I didn't start this conversation thinking that this would be a community that I could include myself in. And then talking to you, I remembered, oh, yeah, this has been a part of my life in the past that hasn't affected it as profoundly as others, but it has. And it's something that it's a part of myself that I can honor and, you know, bring to bear in these conversations as I think about it. And yeah, I mean, it's just such a fascinating topic and one that, I don't know, having this

conversation is so beneficial to me and to the rest of us when we have it. I mean, in some cases, people are not being identified until they're in college. Yeah. In other cases, they're not being identified appropriately in primary, secondary school. And so they're not getting the supports that they need. And in some cases, it's part of the group of kids who drop out of school. It's part of the group of kids who drop out of school. And when you look at the juvenile prison system,

the rates of disabled people and subsequently adult prison are like 40 to 70% have disabilities. And certainly ADHD is one factor. I'm not saying at all that if you have ADHD, you have a preponderance of dropping out of school. But combining it with other things, racism and other forms of discrimination, one can really see kids being pushed out of school. And I think like with polio, ADHD, it's a label, but I had polio where I'm a quadriplegic. Many other people had polio where they were able to walk and do most things by themselves. And then at one point there were like a million people who as they were getting older and had

polio started getting something called post-polio syndrome, where the effect of polio was coming back. And so with ADHD, it's the same thing. You have a range, right, of very significant to less significant. Yeah. Do you have any, just to wrap us up here, Having spent a lifetime on the forefront of this movement, do you have any sort of bird's eye view of the progress that's been made and the progress that remains to be made? Or how have you seen society change in this time? Have you been surprised and gratified, or have you been disappointed by the amount that's left to be done? I guess what I would say is I see that 504 and the ADA have had a significant impact on changing the built environment. changing the built environment. We're seeing higher rates of disabled people graduating from high school going to universities, although the dropout rate is higher than for others.

Unemployment is still a major issue. Employers are beginning to do a little better work in this area, but the numbers are still nowhere near acceptable. And I guess, you know, when I work in the Obama administration as the special advisor for international disability rights, and that's a whole other subject to discuss, but I mean, what's going on internationally for disabled people and failures that the U.S. government has been involved with, like not ratifying something called the Convention on the Rights of Persons with Disabilities, which is a big problem. But media, I would say that one of the largest barriers that we're facing is the fact that media itself does not represent disabled

people who are black, Latino, Asians, LGBTQ, Muslims, whatever. Consistently from stories that are being told to kids when they're born to our television programs, our children's programming, our advertising, our university courses. We are still so absent. My paper points that out, but there are many different organizations also working on this, and you see better representation. But according to GLAAD and the Annenberg Foundation, you're really only looking at two and a half to three percent of representation. And one of the other major issues is 90% of the people representing disability don't have disabilities themselves. And obviously that is a major issue because in many cases, people are not even being auditioned. So Trevor Noah did a piece on this. In January, there was a controversy going on with a movie called Upside that starred Brian Cranston.

And Brian didn't have a disability, doesn't have a disability as of now. I saw the poster. He's in a wheelchair on the poster. And I was like, hold on a second, Brian Cranston, you're not in a wheelchair. Right. But I think, so what Trevor was talking about was he saw a piece on Facebook by a disabled person who was an actor. And what the actor said was what concerned him is that he and many others never go to audition for these parts. And so they're not given the opportunity to be able to show what they could do and be considered. And Noah basically goes on and on and on about this

and how he thought about this in a different way. And I think that was very important. So when I talk about areas that I think we still have to overcome and address, there are the major issues like education, employment, equity in our communities. But really, I see media as something which is so pivotal. It plays such a profound role or not in our communities. I mean, really, one of the reasons why I like your show is because it looks at issues that are important to me. And it brings in real facts. And it does it in a way which makes me lean back and say, wow, this is really interesting. And I can now use it in my

thinking. And so when we talk about, you know, why are stories important? Stories are important because in part, you see yourself, right? You see yourself in a book, in a movie, in a documentary, on television, in advertising. When you don't see yourself as a disabled person, you become invisible. And that invisibility makes it difficult for people to say, I have a disability, just as something which is, I have red hair. I'm five foot six. And that's what it should be. I have a disability. I'm Jewish. I'm 72 years old. It is a part of who I am. And it plays a bigger or lesser role in your life on a day-to-day or minute-by-minute basis. Well, I really can't thank you enough for coming on the show to talk to us about this and for your work fighting on this issue for the past decades, but also for, yeah, I mean, I found this to be a really transformative conversation, and I really hope the folks listening feel the same way, and I can't thank you enough for being here. You're very welcome. I really appreciate it, being given the call to do this.

You're very welcome. I really appreciate it, being given the call to do this. Well, I want to thank Judy Heumann one more time for coming on the show. That was a truly incredible conversation. I hope you got as much out of it as I did, even if you didn't relate to it as personally as I did towards the end there. But man, what an incredible person. What a story. And what a privilege to have her on the show

that is it for us this week on Factually, I want to thank our producer Dana Wickens, our researcher Sam Roudman Andrew WK for our theme song I Don't Know Anything, you can follow me on Twitter at Adam Conover, you can sign up for my mailing list at adamconover.net where I'll send you fun factoids and tour

updates and things like that and until next week, we'll see you next time on Factually. Thanks for listening. That was a HateGum Podcast.