All About Change - Season 3, Episode 8: ADA 30th Anniversary Special with Leading Disability Rights Activist Judy Heumann

Episode Date: July 15, 2020

In honor of the 30th Anniversary of the Americans with Disabilities Act, join Jay and his guest Judy Heumann for a special episode of All Inclusive. Judy is one of Time Magazine's 100 Women of the Century and a leading disability rights activist. Join Jay and Judy as they discuss her beginnings in activism that led up to the passage of the landmark civil rights legislation for people with disabilities in the United States.See omnystudio.com/listener for privacy information.

July 26, 2020 marks the 30th anniversary of the Americans with Disabilities Act. What many people may not know is that the groundwork for the historic legislation began many years earlier. All Inclusive, a podcast on inclusion, innovation, and social justice with Jay Ruderman. Hi, I'm Jay Ruderman, and this is All Inclusive. My guest today is Judy Heumann, a pioneer and leading activist who helped begin the journey to the legislation many years earlier. Judy, thanks for joining us today. We are living now in the midst of the COVID-19 pandemic, which we've been isolated for several months, and there have been protests that

have broken out across the United States and around the world as a reaction to the murder of George Floyd. You have a lot of experience with protests and demonstrations. What are your thoughts about what's happening in our world today? So first of all, Jay, thanks so much for asking me to be on your show. And it's a very complicated question because there's so many things that are happening simultaneously. There are many ways to look at what's happening, one of which the atrocity that was committed against George Floyd in broad daylight with obviously no sense of wrongdoing from any of the police officers, I think really clearly shows the disregard that

some people have towards the lives of Black men and others. And that, I think, really has shaken myself and millions of people in the United States and around the world to see this. And I think one of the important parts of what is happening as a result is, for those of us who may not experience the stories that I've heard from many Black men over the years and from one of our rabbis, actually, who came from LA and moved to Florida. And when he was in his early 20s, there was an altercation where he was picked up by a police officer and brought home to his family. And he said in synagogue, you know, if I was Black, I would not have been brought home to my family. I would have been arrested.

I'd like you to talk a little bit about what it was like growing up. I read what you wrote about your parents and being immigrants from Germany and their families being victims of the Holocaust and what it would be like as a young disabled person in Germany and the fact that people with disabilities were among the first victims of the Nazis and extermination and how that impacted you as a child, also someone that had polio, you know, how your parents reacted, how your neighborhood reacted, your friends. What was your childhood like? So, I mean, I had a great childhood. I always felt accepted and loved by my parents. And in the neighborhood that we lived in, I grew up in Brooklyn. And so we lived in an area where there were no apartment buildings

on our block or on a number of other blocks. So there were, it was, you know, middle class, not upper middle class, middle, middle, middle, lower class. And, you know, we had an author, a policeman, a teacher, a firefighter, very kind of typical community. And because my parents moved in there when I was like three months old, and it was a neighborhood of a lot of young families who had children a little older than me, the same age, younger. It was a pretty tight-knit community. My brother was born when I was in the hospital because I had polio in 1949, August. My brother was born in September, 1949. And the neighbors really helped out a lot. So I think as I mentioned in the book, I knew that I was different. I used a wheelchair. Steps really

adversely affected me. The synagogue that we went to was a building that had lots of steps. The synagogue itself was up two flights of steps. And where we studied on Sundays was also up two flights of steps. And my father would carry me up and down the steps. My uncle lived in a house. All of our relatives lived in places that were not accessible. And my uncle lived in a place where there was like one very steep flight of steps. And my dad would carry me up and down. I was in Brownies. It was in the church up the block. My mother pulled my wheelchair up and down the steps. The Jewish program that I went to when I started studying also had steps. So steps were everywhere.

My father was very interesting, Jay, because when I had polio, they had just bought this house. And I guess when I was like, I don't know, five or six years old, they built a ramp and they built an extension to the house so that I'd be able, when I got too big for my mother, to carry me up and down the stairs because my father had a butcher store and he left for work between 3.30 and 5 in the morning so I could start sleeping downstairs. So they were pretty observant in relationship to looking ahead at what needed to happen. And that was all very important. I think, as you mentioned earlier, I was denied the right to go to school when I was five because the principal deemed me a fire hazard,

even though my mother would have walked me to and from school and pulled me up and down the steps of the school and helped me go to the bathroom and everything. At that point, they didn't know any other families that had disabled kids. And my mom came over when she was 12. She was an only child. Her parents died in the camps. My father had a couple of brothers. They all made it over, but his parents also died in the concentration camps. And so they were just trying to move ahead, creating their life. They weren't looking at becoming advocates.

They weren't not looking at it. It was just not, you know, they got married. They wanted to have children. My father, my uncle started a store and everybody was busy with, you know, moving the family forward. So they really had to make some important adjustment, really, which I think was my mother's inquisitiveness and my mother's ability to kind of dig more deeply into trying to get me into school. You know, we had a couple of incidents. There was a Jewish day school that my mother tried to get me into for the first grade.

And the principal of the school said, I didn't know enough Hebrew. So the physical therapist that I had, his wife was from Israel. So my mother took me over to their place a number of times a week to learn Hebrew. And she called the principal of the school, because I hear this story, like in August, and said that she was sure I knew enough Hebrew to begin to go to the school. But the principal never intended on my coming to the school. I think he just thought that he would say I couldn't speak enough Hebrew and my mother and father would do nothing about it. So, you know, we began to see even when you did things that people said, if you do this, we'll do that. That wasn't true, that they were beginning to get

a better understanding that if one had a disability, the world was not like for Franklin Roosevelt and that they needed to be able to continue to become advocates. When I finally was able to get into a program, which was called Health Conservation 21, the kids in the classes, the regular school building went up to the sixth grade, but the special ed classes, like in my class, there were kids who are 18, 19 years old. They'd stay until they're there 21 and then they would go to sheltered workshops there were no kids that had gone to high school who were from our program and my mom and other mothers worked with the board of ed in new york to get them to

open up some high schools so you know they were doing all kinds of things not just my mother but other mothers uh really learning the role of advocacy and not accepting no. I remember my mom telling me this story of, so she used to do volunteer work for the March of Dimes. Because remember, the vaccine didn't come out until 55. And when she and these other mothers were working on trying to get the Board of Ed to make some high schools accessible, she went to the March of Dimes and asked for their support. And they told her they didn't get involved in political things. So my mother stopped collecting money in the neighborhood. And I have to say, you know, it wasn't just work that she did with me. You know, as I had moved out of the neighborhood,

gone to California, she was very active in the Neighborhood Association, working against the banks that were red zoning the neighborhood so that whites would move out and blacks would come in. They were trying not to allow people to buy homes in the neighborhood, but do rentals. And so she was very involved in helping that not occur in the area that we lived. So I mean, I really learned a lot from my parents and learned, you know, that there's a time when, you know, we have to take on our own lives and our own responsibility. Your parents sound like they were extraordinary people. In a very ordinary way. Right. But it came very naturally to them that, you know, when they were, I believe you wrote about a doctor suggesting that

you be institutionalized and they just could not have imagined that possibility. However, at that time, I'm sure a lot of children with disabilities were institutionalized. Yeah, they didn't tell me. I was like 35 or 36 before I heard about it. I never knew that. My father told me I was visiting and I said, I told him he was wrong. I was running up the steps calling my mother, Elsa, Elsa, isn't this true? And she said, yes. And that was the end of the entire discussion. You know, the Holocaust played an important role in our life on some level. The synagogue that we went to was all German Jewish. Many of them had lost family members. And it was started by one of my

great uncles and some other people. And so that was always a part of our upbringing, even though on some level, people didn't discuss it a lot. It was always something that was there. And very important. I think it did, in its own right, inspire my parents to really want to ensure that we were, that I, in particular, was not adversely affected by having a disability. Recently, you published your memoir called Being Human, an unrepentant memoir of a disability activist, and it's received really great reviews. Maybe you can talk a little bit about what, at this point in your life, led you to write it, and what was the experience like of writing it?

So what led me to write it was lots of people telling me for many years that I should write a book. And my saying, I was never going to be able to write a book by myself. And it was just fortuitous that someone who was a friend of mine and had a disability knew a company that was interested in working with me on trying to get this book written. And so we were able to get an agent and I found a writer, Kristen Joyner. And that has been a very important experience in my life. Working with someone else who doesn't know you, for me, was difficult. And it really made me have to be more forthright. And I don't like being, I'm happy being critical about certain things. But when it comes to me, I tend not to be my own strongest advocate in certain

ways. And so the experience was important for me because Kristen is a really good writer, but she didn't know my story. And it was really important for me for this story, not only to be literally accurate, but it needed to have a certain tone that had to be my tone. And so she is a writer. And one of the things that we would frequently engage with is she would write something, I would be working on it and trying to explain how this wasn't really my voice yet and working on getting the language, the rhythm of the writing to be one which I felt was representative of me. And when she started, when we started working together, she was in California working in D.C., traveling back and forth. And then she left this job and she moved to New Zealand.

So that in and of itself was a big challenge because New Zealand is the next day and their night and our day light are different. But we made it work. We each worked a huge amount of hours on the book and I feel happy about it. You're listening to All Inclusive with Jay Ruderman. You can learn more. View the show notes and transcripts at rudermanfoundation.org slash allinclusive. Please remember to subscribe, rate, and review us wherever you are listening.

Joseph Califano, who was the United States Secretary of Health, Education, and Welfare under President Carter, refused to sign meaningful regulations for Section 504 of the Rehabilitation Act of 1973. In response, you helped organize the 504 sit-in in 1977 that lasted 28 days in San Francisco. What do you remember about that time? There's an organization that had been started in 1975 called the American Coalition of Citizens with Disabilities. And one of the reasons why ACCB was started was because of the 504 regulation, because we were concerned that the process that was going on in developing the regulations needed to be followed through,

and we needed to make sure that we were going to be able to get the regulations signed in a way that was meaningful. And so when Gerald Ford left office, he refused to sign the draft regulations. And when Carter was running for office, he said that he would sign the regulations or he would have them signed. And then, you know, he came into office and Joe Califano came in. We, we, ACCD and the member organizations were becoming very concerned because we were hearing from staff who work within the department that although the secretary was saying they were going to do a review, which they had a right to do because you were switching from the Republicans to the Democrats, we were afraid, based on his

background of being a lobbyist for universities and healthcare facilities, that he was going to try to change the regs. And we were also hearing internally about a growing list of issues that he was looking at considering to make changes. So the demonstration in San Francisco was in some way similar to what happened to the demonstrations in Manhattan. By that, you know, when I said to the demonstrations in Manhattan, we did not have a plan that we were going to sit on Madison Avenue. When we went to the demonstrations in San Francisco at the Health Education and Welfare Building, we had intended by and large to have a big rally outside. We had talked to the staff of the regional secretary and said we wanted to have a meeting with him. And we had a planning committee

that worked with his office because we were going to have people from the demonstration, from the rally outside come into the building. And all of that had been set up. So when a group of us went into the building, into his office, Joe Maldonado, I mean, I fully expected that he was going to have been briefed. I had worked in Washington, D.C. for a year and a half as a senior senator of the Labor and Public Welfare Committee. And I knew that he never went anywhere without getting a briefing. And so I was just following that model. You wouldn't have, I

couldn't believe that you would have a regional director in the largest federal region in the country going into a meeting where they knew that they were going to be discussing the 504 regulations being unprepared. But the man was totally and completely unprepared. He didn't know what 504 was. You can see in the film and in the book that I asked him to bring his staff in because I assumed, okay, maybe they wrote him a briefing memo and he didn't read the briefing memo. I mean, I had all these thoughts going through my mind really based on my experiences working in Washington. And his staff came in, nobody knew anything about what was going on in Washington. And they kept deflecting to this is being handled by so and so

in Washington. And I think that really made those of us in the room decide we couldn't leave that building. A couple of us a day or two before had started talking about, well, what if we wanted to stay in the building? What if we wanted to stay in the building? What if we needed to stay in the building? But I think like only a couple of us came in, like I came in with a toothbrush and an extra pair of underpants. And that's how, you know, I was ready to stay. And a couple of other people had brought toothbrushes in. But really seriously, we weren't looking at it. When Joe Maldonado didn't know what 504 was, when his staff didn't know what was going on, and we knew that the Bay Area was the most well-organized. Ed Roberts was the

director of the Department of Rehabilitation. He had used some of their rehab money to help set up CILs. There were 10 CILs in California. Which is the Center for Independent Living? Centers for Independent Living, but not the Berkeley Center, but the other centers that were started in California. Numbers of them were started with rehabilitation dollars before the Rehab Act was amended in 78 to set up 10 national Centers for Independent Living. So California had more CILs. We'd been more involved with labor unions, more involved with other progressive groups. So we felt that, well, because for the rallies, we had been working with quite a number of organizations before the actual day that we went into the federal building. So you could see the rally

that we had the day that we moved into the building, you know, we had letters of support from Cesar Chavez. We had, you know, support from many of the leaders, not just the disability leaders. That was another very important thing. And because the disability community was active, we were also known by the mayors of San Francisco. So Mayor Moscone, unfortunately, was later killed, as was Council Member Milt. But he was very supportive. Ed was in Sacramento. And so we were able to get, like the Secretary of the Department of Health sent down mattresses to the building so that people wouldn't have to sleep on the floor. We were well organized and we decided that we were not going to leave because all the other demonstrations that had taken because all the other demonstrations

that had taken place in the other eight regions and one or two other cities, people were beginning to have to leave like within a day or two. And we were the one group that was able to hold out. So just to back up a little bit, 504, which is a precursor to the ADA, why was that so important? 504, which is a precursor to the ADA, why was that so important? By him not signing that, was that like him saying, I'm not recognizing the rights of people with disabilities? By him saying, by Secretary Califano saying that he was going to review major provisions in the proposed regulation meant that we really had to be concerned that whether the intent of non-discrimination against disabled people in programs receiving money from the federal government was going to be worth anything. And there have been years of discussions where staff

at HEW have been traveling around the country, getting a better understanding of both the type of discrimination that people were facing and looking at coming up with proposals that would meet the intent of addressing discrimination against disabled individuals. But like with the ADA, could not come out saying that all buildings that were built with federal money were going to have to be retrofitted. Because remember the issue with 504 regulations, unlike the ADA, the 504, sorry, the 504 statute, unlike the ADA statute, the 504 statute was like 42 words. You couldn't discriminate against one based on disability if you were accepting a federal financial assistance. It didn't define disability. It didn't define discrimination. It didn't define remedy. It didn't do discrimination. It didn't define remedy. It didn't do anything. And so really what John Wodatch, who was one of the leaders from the government side of developing these regulations, had to do was to really begin to get a better understanding of who was the population that was being discussed, what was discrimination, and what remedies could be required both to prevent discrimination in the future, i.e. building a new building with government money would have to be accessible or renovating a

building with government money would have to be accessible. If we would have in any way caved in and not really held our ground, the regulations would have been much weaker than they are now. And I think we felt that with the proposed regulations that did get signed, that we could live with those regulations. Comedy Central has a show called Drunk History, and they did an episode on the 504 sit-in, and Tony Award winning actress, Allie Stroker, played you. Have you seen it? What was your feeling about seeing yourself made into a cartoon and played in this show? Well, you know, I love the piece and I had to step back after I saw it

just to say this inaccuracy here and that inaccuracy there really didn't matter because what was important, I think, about Drunk History 504 is that it showed on the Drunk History program. And so the day that it showed, when they have their episodes, they have three episodes. And so the particular day that it showed, it was an episode about a woman who was a suffragette and an episode about the

Selma walkout from high school where a couple of black young teenagers walked out of the schools because of the terrible education they were receiving. And then there teenagers walked out of the schools because of the terrible education they were receiving. And then there was the issue of the 504 demonstrations. And people watched it. I remember my niece calling me who I had no idea. She regularly watched Drunk History. I think 100,000 people saw Drunk History that night. And so 100,000 people got to learn about a piece of history that they knew nothing about. So I think it was amazing. And I think, you know, Candace Cable,

who was the one whose sister worked in a costume at Drunk History, she was the one who was able to persuade the program to do a piece. And she helped them select the piece that they were going to do. I actually didn't meet Allie until the night after the drunk history piece showed. And we've been friends ever

since. And she actually is the person who read my book. So she's done the audio. Oh, interesting. You were named one of Time Magazine's 100 Women for the Century. How did that make you feel? I knew nothing about it. It was very funny. I was going on the Trevor Noah show on March 4th and I was in New York and I was, you know, taking some time out to kind of get my mind in order to be able to do the show. And I was looking over emails and there was an email that said, tomorrow you're going to be one of a hundred women in Time Magazine. I knew nothing at all about it. They sent me the piece so I could read it, but you couldn't give any comments. And I was very honored by it. I mean, how could it be anything else? I don't know who nominated me. I don't know how it happened. And I think, you know, for me, they picked 1977 because of the 504 demonstration.

And, you know, my name, I think, represents the thousands, millions of other disabled people who have done and will continue to do so much work to continue to fight for our rights. Well, Judy, you're very humble. You are one of the foremost leaders of the disability movement, and you've personally, in conjunction with other colleagues and other groups, you've really changed the landscape for people with disabilities in the United States and around the world. So I urge everyone listening to this show to pick up a copy of Being Human, an unrepentant

memoir of a disability rights activist by Judy Heumann. It's a fabulous book about the disability rights movement in your history. And I thank you for writing it. And I thank you for joining us on this show. It's been a pleasure. Thank you very much. It's a privilege to be with you. Thank you and be well.

All Inclusive is a production of the Ruderman Family Foundation. Our key mission is the full inclusion of people with disabilities in all aspects of society. You can find All Inclusive on Apple Podcasts, Google Play, Spotify, and Stitcher. To view the show notes, transcripts, or to learn more, go to rudermanfoundation.org slash allinclusive. Have an idea for a podcast? Be sure to tweet at Jay Ruderman. Thank you.