As part of the all-virtual 2021 Virginia Festival of the Book, advocate and author Judith Heumann (Being Heumann: An Unrepentant Memoir of a Disability Rights Activist) discussed her book and her life’s work in conversation with John Wodatch. Through Being Heumann, one of the most influential disability rights activists in U.S. history tells her personal story of fighting for the right to receive an education, have a job, and just be human.
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- The young readers version of Being Heumann, Rolling Warrior: The Incredible, Sometimes Awkward, True Story of a Rebel Girl on Wheels Who Helped Spark a Revolution by Judith Heumann and Kristen Joiner, is available for pre-order (June 2021).
- The Oscar-nominated Crip Camp may be watched online via Netflix and YouTube here.
“Thoughtful and illuminating, this inspiring story is a must-read for activists and civil rights supporters.” —Publishers Weekly, starred review
“A driving force in the passage of the Americans With Disabilities Act looks back on a long career of activism… A welcome account of politics in action, and for the best of causes.” —Kirkus Reviews
“A moving chronicle of social change, Being Heumann will restore your hope in our democracy and the power of our shared humanity.“ —Darren Walker, president, Ford Foundation
Thanks to our community partners for sharing information about this event: Disability Advocacy & Action Committee at UVA, Disability Studies Initiative at UVA, and UVA Student Disability Access Center
JANE KULOW: Welcome to “Being Heumann with Judith Heumann,” a program in the all-virtual 2021 Virginia Festival of the Book. I’m Jane Kulow, director of the Virginia Center for the Book, a program of Virginia Humanities. Thanks for joining us. A couple notes before I hand the program over to our speakers: Please share your questions using the Q&A tab on Zoom. This event has ASL interpreters and one of them will remain visible throughout. This event also includes optional closed captioning, which you can turn on and customize using the Closed Captions tab at the bottom of your window. If you haven’t already read today’s book, we hope you will. For details about how to buy it from our bookseller for this event, UVA Bookstore, visit VaBook.org, where you can also explore our full schedule and watch past events. While you’re there, please consider making a donation to support the Festival’s ongoing work at VaBook.org/give.
We thank our community partners for their support of this event: Disability Advocacy & Action Committee at UVA, Disability Studies Initiative at UVA, and UVA Student Disability Access Center. We also greatly appreciate the support of all Festival sponsors, donors, and community partners. I want to say a special thanks to Judy Moody, who has been on staff at Virginia Humanities for twenty-one years. Ms. Heumann is the first author that Judy has ever suggested to me, and what a recommendation that was. Thank you, Judy Moody.
Now, I’m pleased to introduce our speakers: Judith Heumann is coauthor, with Kristen Joiner, of Being Heumann: An Unrepentant Memoir of a Disability Rights Activist. Judy is an internationally recognized leader in disability rights advocacy at home and abroad, having served in the Clinton and Obama administrations and as the World Bank’s first adviser on disability and development. She held the longest ever Federal sit-in which led to the passage of Section 504, and she appears in the film Crip Camp, winner of the 2020 Sundance Film Festival Audience Award, released on Netflix, now available on YouTube, and nominated for an Oscar.
Our moderator is John Wodatch, a disability rights attorney specializing in the Americans with Disabilities Act and international disability rights work. He wrote the U.S. Government’s Section 504 regulations in the 1970s, he helped write the ADA, and he headed the Justice Department’s ADA enforcement unit for more than twenty years.
Thank you all for joining us today. Thank you, John. Thank you, Judy, It’s all yours.
JUDITH HEUMANN: Thank you.
JOHN WODATCH: Thank you. Let me begin. I met Judy in 1974, and our lives have been intertwined over the years. First when she was in Washington working. She was then an aide on the Senate Committee for Labor and Education with Senator Harrison Williams, the committee that birth Section 504. And you’ll hear more about her amazing life as we go along.
I think what’s very important about this book is that Judy’s life story parallels the story of disability rights in the United States. So, you’re getting a twofer. You’re learning about Judy, and you’re learning about the disability rights movement.
I think one of the most important things are the themes that are important to people with disabilities, to the disability rights movement in our country, are things that occupied Judy from the beginning of her life. The need to understand herself as a person with a disability, the desire to make her own decisions, the ability to play and live together with her friends, whether as a child in her neighborhood or as an adult in her communities, and the desire to be self-sufficient. You can see her developing her voice in this as her life goes on. And I asked Judy to read a part from the beginning of the book that sort of starts telling us about the nature of this. Judy, if you will.
JUDITH HEUMANN: Thank you. I also want to say it’s been a privilege for me to grow with John. Because obviously, in 1974, we were much younger. And our paths, while different, have been very parallel. So, it’s really an honor for me that he’s moderating tonight, and we’ve been doing a number of these together. So, this is from the prologue of the book.
I never wished I didn’t have a disability.
I’m fairly certain my parents didn’t either. I never asked them, but if I had, I don’t think they would’ve said that our lives would’ve been better if I hadn’t had a disability. They accepted it and moved forward. That was who they were. That was their way. They deliberately decided not to tell me what the doctor had advised when I recovered from polio and it became clear that I was never going to walk again. It wasn’t until I was in my thirties that I discovered what he’d suggested.
“I recommend that you place her in an institution,” he said.
It wasn’t personal. It didn’t have anything to do with our family being German immigrants. Nor was it ill intentioned. I am sure he sincerely believed that the very best thing for these young parents to do would be to have their two-year-old child raised in an institution.
In many ways, institutionalization was the status quo in 1949. Parents weren’t necessarily even encouraged to visit their institutionalized children. Kids with disabilities were considered a hardship, economically and socially. It brought stigma to the family. People thought that when someone in your family had a disability, it was because someone had done something wrong.
I don’t know how my parents responded to the doctor, because my family didn’t talk a lot about things like this. But I am sure my parents would have found the idea of putting me in an institution very disturbing. Both my mother and father had been made orphans by the Holocaust. As teenagers they’d been sent to the United States. It was the time when Hitler was coming into power, when things were getting bad enough that people worried about the safety of their children but didn’t think it was going to get as bad as it did. My father came to live with an uncle in Brooklyn at fourteen, and he was lucky that his three brothers followed very soon after. My mother was an only child and was sent alone to live in Chicago with someone she didn’t know at all. The story was that a distant relative came from the States to visit my mother’s family in Germany and brought news of the worsening situation. The information convinced my grandparents to send my mother, their only child, away to live with this distant relative.
I’ve often imagined what it must have felt like for my mother. You’re twelve years old, and one day someone you don’t know, someone you never met before, comes to visit your family and two weeks later you’re suddenly gone from Germany forever, living alone in Chicago with unfamiliar people. My mother always thought that her family would get together again. Even during the war, she was working to save money to bring her parents over. Only later did she learn that they had been killed.
If I’d been born just ten years earlier and became disabled in Germany, it is almost certain that the German doctor would also have advised that I be institutionalized. The difference is that instead of growing up being fed by nurses in a small room with white walls and a roommate, I would’ve been taken to a special clinic, and at that special clinic, I would’ve been killed.
Before Auschwitz and Dachau, there were institutions where disabled children were eliminated. Hitler’s pilot project of what would ultimately become mass genocide started with disabled children. Doctors encouraged the parents to hand their young children over to specially designated pediatric clinics, where they were either intentionally starved or given a lethal injection. When the program expanded to include older children, the doctors experimented with gassing.
Five thousand children were murdered in these institutions.
The Nazis considered people with disabilities a genetic and financial burden on society. Life unworthy of life.
So when an authority figure in their new country, a doctor, said to my parents, “We will take your daughter out of your home and raise her,” they never would have agreed to it. They came from a country where families got separated, some children sent away, others taken from their families by the authorities and never returned—all as part of a campaign of systematic dehumanization and murder.
Their daughter, disabled or not, wasn’t going anywhere.
JOHN WODATCH: Judy, that to me is very powerful. I’ll tell you that I’ve known you for almost fifty years, but the part of the book that was interesting to me was the part that I didn’t know—your growing up. And what I learned—and for those of you who’ve seen Crip Camp, you will know this—that Judy was a strong, outspoken, independent person from the start. And I’ve always wondered how did that happen. How were you so outspoken from the start? And I’m beginning to think your parents, from just that reading, had something to do with it. Can you talk about that a little bit?
JUDITH HEUMANN: Yeah. I think it’s a great question. Now what I haven’t read yet—it’s in the book—were other incidents of things that happened. So, when I was five and my mother took me to school and was not asking for any services—there were no laws in 1952 or ’53 when my mom tried to get me into elementary school. And the principal said I was a fire hazard and couldn’t go to school. And they sent a teacher, when I was in Brooklyn, from the Board of Ed for a total of two and a half hours a week.
So, my mother was continually looking at places where she could get me into school. My parents were trying to raise me like my brothers. They wanted me to have a good education. But there were all these barriers, which they really took on one by one. I think one of the ones that really also indirectly but directly influenced me was my mother worked with other parents to get the Board of Ed to make high schools accessible. Because at that point, I was in Health Conservation 21 classes in Brooklyn. [N.B. Health Conservation 21 was a program for kids with disabilities that was offered in various schools around the district.] The basement—all disabled kids. The rest of the building was all non-disabled kids. And in my classes, I had kids in the unit who were like four years old up to twenty, twenty-one. And what happened is kids did not go to high school. They stayed in this elementary school. Other, non-disabled kids left when they were in the sixth grade. And it was my mom and these other mothers who enabled us to go to high school.
I was the first kid in my Health Conservation 21 class to go to high school. And then friends of mine younger than me began going to high school too. So, there were many of these incidents where, A, my mother and father were trying to get me treated equitably; and B, they were working with other people who were experiencing similar problems.
I learned this working together from them, and I learned that being—my mother was a strong but—I don’t want to say quiet. But she was forceful but I think I ramped it up over the years. But I definitely learned from them that if you believe in something, you need to think it through how you’re going to do it, you need to work with other people, and look forward. My mom had a number of different cancers, and what really always impressed me was when she—she had cancer in like ’89, and then after five years or six years, it was gone. And then she got another cancer a year or two later. And when I asked her something like, looking back, are you worried based on what had happened before, my mother did not look back. My mother looked forward.
I think that’s probably one of the reasons why, having experienced what she did with the loss of her parents, that she was always looking forward. Things that she could do to make things better, always working with other people.
JOHN WODATCH: Judy, your memories of your childhood are very strong and poignant. We have a question from one of the participants, and it’s the same question that I have. It deals with an interesting reading in the book in terms of your relationship with other children. I wonder if you could read that and then talk a little bit about it.
JUDITH HEUMANN: Sure.
I think it was a beautiful sunny day, but it might have been cloudy. I don’t remember. What I do remember was being caught up in my conversation with Arlene as she pushed me in my wheelchair, talking about what we were going to buy at the candy store, or what we wanted to do later that day. We were pleased to be walking around the corner to buy sweets. In front of Dr. Nagler’s brick house, which I knew was Dr. Nagler’s house because I’d been there with my mother for her doctor appointments, we paused to cross the street. Arlene turned me around to lower my wheelchair off the curb, pushed me across the street, and then, once we reached the other side, she put her foot on the metal bar on the back of my chair, tipped me and the chair back—oh my god, guys, my battery is running low. I’m so sorry.
JOHN WODATCH: I’ll fill in. I’m a poor substitute. Where were you, Judy?
JUDITH HEUMANN: Page twelve.
JOHN WODATCH: I got it. Okay. Remember she’s in front of Dr. Nagler’s house.
Arlene turned me around to lower my wheelchair off the curb, pushed me across the street, and then, once we reached the other side, she put her foot on the metal bar on the back of my chair, tipped me and the chair back, and lifted my chair onto the sidewalk. As we did this, a few kids came toward us from the opposite direction. They were walking slowly down the sidewalk. As they passed, Arlene shifted my wheelchair to the side to make room for them. We didn’t know them and didn’t pay much attention, engrossed as we were in our conversation. So I was surprised when one of the kids turned suddenly to look at me.
He stood in front of me, staring down at me in my wheelchair.
“Are you sick?” he asked me loudly.
I stared at him, not understanding.
“Are you sick?” he repeated insistently.
His voice boomed. I shook my head, trying to clear the words away. I was still confused but couldn’t speak.
“Are. You. Sick?” he asked, slowing the words down as if I were a toddler.
The world went silent as the words reverberated in my head. I couldn’t hear anything except those words.
“Are. You. Sick. Sick . . . Sick . . . Sick . . . Sick?”
I shrank down, frozen with confusion, wanting to cover myself up with something. Anything to hide from that question, the boy’s insistent eyes on me.
“Are you sick?” he asked insistently, almost shouting.
Suddenly, I became aware of Dr. Nagler’s house behind me, and my face turned a cringingly deep red.
Does he think I’m going to the doctor? But he’s not my doctor, I thought fiercely. I fought back tears. I couldn’t, wouldn’t cry in front of anyone. I wasn’t sick. It made no sense. I knew I wasn’t. But then why was he asking me that?
I became uncertain of myself. Was I sick?
I saw myself through his eyes, and the light around me shifted. Shadows emerged from the corners of my mind; previously submerged words, thoughts, and half-heard conversations tumbled into the glare of a spotlight.
In a blinding flash, everything in my life made a perverse kind of sense.
I couldn’t go to this school, I couldn’t go to that school. I couldn’t do this, I couldn’t do that, I couldn’t walk up the stairs, I couldn’t open doors, I couldn’t even cross the street.
I was different. But I’d always known that. It wasn’t that.
It was the world and how it saw me.
The world thought I was sick.
Sick people stayed home in bed. They didn’t go out to play, or go to school. They weren’t expected to go outside, to be a part of things, to be a part of the world.
I wasn’t expected to be a part of the world.
Abruptly, I knew this to be true. As if the knowledge had already existed for years throughout my entire body. I felt nauseatingly humiliated at the idea that everyone else had known this but me. Had they kept it from me? The embarrassment settled in as a cold ball deep in my stomach, where I could feel it spreading into my limbs.
Was it sunny or cloudy? I don’t know. I remember Arlene was pushing me. We were going to the store to buy candy, and we were chatting.
And I was a butterfly becoming a caterpillar.
Judy, are you back?
JUDITH HEUMANN: I am, but I’m trying to plug this in. It says 10 percent.
JOHN WODATCH: Okay, well I think we can hear you. Can you discuss that very powerful passage with us?
JUDITH HEUMANN: It was a very important part of my life because it was really, as the section explains, really a turning point where I was going from knowing that I was different, that I had a disability, but being seen by other people as being sick. And the word sick obviously is a very loaded word, even for an eight-year-old. So, the language that Kristen and I use in the book was very much like a wake-up period for me, where I was beginning to understand various things that had been going on in my life that I couldn’t really comprehend. So, when I was denied the right to go to school, I didn’t really understand why that was happening. When these boys said what they said to me, it was really a rude awakening.
And, guys, I’m wondering, can I go on the phone? Because for some reason, my iPad is not charging. Is there a phone number I can call?
JOHN WODATCH: Sarah or Jane, can you answer that question? They’re going to send you the number, Judy.
While she’s getting ready, I’m going to give an intro to another part of her life that I think is interesting in the book. We’re going to skip ahead till when she has made it through high school, is in high school, and is considering what she’s going to do next. And for reasons she’ll talk about, I think being a teacher was one of them. And she, living in Brooklyn, applied for a job with the New York City public school system. This became an important event in her life and in the disability rights movement.
To make a long story short, they denied her. And she’ll go through some of the experiences that she had about why she was denied. But what became important was what she did once she was denied.
JUDITH HEUMANN: I’m here.
JOHN WODATCH: You’re here, all right. Well Judy, I’m bringing you forward. I don’t know if you heard what I was doing. I’m talking about your decision to become a teacher and your application to the New York City schools and being turned down. So why don’t you tell us a little bit about that experience? I’m particularly interested, as a disability rights policy wonk, in the role of media in what happened to you and the importance of The New York Times as well as the changes you brought about for New York City. But why don’t you start with why you wanted to be a teacher?
JUDITH HEUMANN: That’s really an interesting question. I think I wanted to be a teacher because other people in my family were teachers. My cousins were teachers. Our fathers were butchers. And it was really a career that my brother went into, my first cousins went into. And I was really wanting to be able to give back.
And I think also I knew when I wanted to be a teacher that it wasn’t going to be easy. So in some way, it was really like a challenge, and I knew it was going to be a challenge. My friends had told me don’t tell the rehabilitation agency that was going to pay for me to go to school—don’t tell them you want to be a teacher because they won’t pay for you to go to school. So I said I wanted to be a speech therapist, and I minored in education. And no one asked me why I was taking courses to be a teacher. So I couldn’t do student teaching, so I worked with other people in helping to set up an after-school program so that I could get experience working with kids who were in school who needed tutoring and things like that.
And I had called the American Civil Liberties Union and said I’m interested in being a teacher, but I don’t know anybody who actually got a job using a wheelchair as a teacher, and I think I’m going to be discriminated against. And they said, “Don’t worry about it. If something happens, call us.”
And so I did. I went through school. I took my courses. I did what I felt were the most effective things I could to prepare myself. Then I had to take a written exam, an oral exam, and a physical exam. They were all given in completely inaccessible places, and my friends carried me up and down the stairs. And I passed my written. I passed my oral. And I failed my medical. And I failed my medical—a long story which I’m not going to get into now. The book talks about it. This woman clearly was prejudiced, and she asked me questions that would be completely illegal. And I had to answer them. She made me come back for a second visit. She wanted me to bring my braces with me, which I had not used since I had had back surgery. She wouldn’t allow me to bring an advocate in the room for the second visit. And I was not surprised when I was denied my license, and the specific reason in writing was paralysis of both lower extremities, sequelae of poliomyelitis.
So, remember we had no laws in place at that point. So, the Board of Education sent the letter out, which they would never send out today. And I wasn’t sure what to do. No one in my family had ever brought a lawsuit. We had one relative who was a lawyer. But as I said, everybody else was butchers and teachers. And I had a friend who was a disabled journalist, and he got a reporter at The New York Times to write a piece about my being denied my job. That was on a Wednesday. And on a Thursday, there was an editorial in The New York Times. I had no press people. I had nothing to do with any of it. If I was running for office, I never would’ve been able to do something like that.
And I got a call from a lawyer, a guy named Roy Lucas, who was writing a book on civil rights and knew nothing about disability discrimination and wanted to talk to me about it. And I quickly made a decision when talking with him that I wanted to go to court. That my fear of what would happen—I hadn’t been in a classroom, could I really teach on and on—was really overcome by my trust in the way he was asking questions.
So, at the end of the interview, I asked him if he would represent me, and he said yes. And then my father had a customer who came into the store the next day who was a lawyer, and he said he would represent me. Both pro bono. So, they worked together.
The judge that we had was the first African-American woman, Constance Baker Motley, to serve on the federal bench. And she was rotating off—I don’t know. I don’t understand law well enough to know what it meant she was rotating off. She was not leaving the judgeship. She was moving to I guess taking other cases. And she said to the Board of Ed, “I strongly encourage you to review this.” And so they did, and I went, and I met another doctor who was younger and was very embarrassed and said, “I’m so sorry this happened,” and I got my license.
Then I couldn’t get a job. Schools weren’t accessible. Principals didn’t want to hire me. And I ultimately got a job teaching in the same school that I had been a student in, teaching for the first year in the segregated classes that I very strongly opposed.
But it was a wonderful experience, and I think really a turning point for me. So, this article from The New York Times, the lawyer calling me, and that same Thursday getting a call from the Today show asking me if I would appear on the Today show the next day. And I’d never done a radio show. I’d never done a television show. I certainly had never done a national television show. And I just thought I’m not going to say no; I’m going to say yes and see what happens. And I think a lot of my life and the life of many other activists really is not because there are opportunities that we’ve created, which certainly I have, but because things happened, and you just kind of go where they may lead you.
JOHN WODATCH: I’m just checking the questions coming in on the Q&A line. But while I’m doing that, Judy, let’s move on to a point where Judy’s life and my life came together in terms of Section 504. Because it’s a focal point of the movie Crip Camp, and it’s a very important part of Judy’s life. Judy was on the West Coast. She had gone and got a master’s degree, was working with advocates, was a large part of the independent living movement that was starting in Berkeley and moving across the country.
I was at that point a fairly young attorney at a federal agency charged with trying to figure out what this new law, Section 504, was. And we had drafted regulations, had put them out for comment. But at the end of the Ford administration, there was a decision not to go forward with them. It was the year of a presidential election. Judy and others worked with then-candidate Carter to get these regulations out, to give some meaning to this new civil rights law for people with disabilities. The administration started. Joe Califano was the secretary who was supposed to put them out, and nothing was happening. In fact, there were rumors that the regulations were being relooked at, might not come out, would be weakened. And Judy was part of an effort to try to get them out.
So that’s the background. Judy, what did you do about that?
JUDITH HEUMANN: I think this is a very important part of history in the disability rights movement. Because as John said, this law was signed in 1973, and then most of you know that when laws are passed at the federal level—regulations, interpretations of the law, telling you what you need to do in order not to discriminate, and remedies, and things like that. At that point, in ’73, most of the people who were lobbying in the Capitol, on the Senate and House side, were non-disabled individuals, with the exception of disabled veterans and some blind people from the blind groups. But by and large, most of the people did not have disabilities.
So we were learning as we were going. What was the regulation? How did we work with John and his team on looking at the words that needed to be defined? And as they were coming up with language that would then be put out in the federal register, how were we going to comment? So as John said, I was living in Berkeley part of the time, and then I was in Washington working with Senator Williams.
Bottom line is, there was a group called the American Coalition of Citizens with Disabilities. And the ACCD really organized around the United States, saying that if the Carter administration did not have the 504 regulations signed by a specific date, that there would be demonstrations around the country. And the regulations were not signed, and there were demonstrations all across the country. The ones in the Bay Area lasted the longest. We were in the building for twenty-eight days. Twenty or twenty-two of us left the building to go to Washington to participate in what was going on in D.C. and met with members on the Hill and were involved in numbers of demonstrations, getting press coverage. The International Machinist Union had come to Washington with us, had driven us around, and we were beginning to make waves on what was happening.
JOHN WODATCH: Let’s deal with one of the questions, which is a little shift from the book. This question comes from Jess, who is very well aware of all the work that’s been done at the elementary and high school level with the Individuals with Disabilities Education Act, but then the gap of getting people with disabilities into college. Getting into UVA, for example, and the university system. I guess looking into how can you get services like ASL interpreters, IEPs, least restrictive learning environment, without the onus of access being at the behest of the student trying to transfer in? How can they encourage institutions to be inclusive without having to do it over and over again individually?
JUDITH HEUMANN: Well, unfortunately, I think the way it is now, you apply to school—universities, community colleges, whatever—and if you’ve had an IEP or a 504 plan, it should be pretty seamless, depending on the university. And one of the things I believe we need to be doing—and I feel this very strongly—is people need to have a better understanding of what the ADA and what 504 and what IDEA requires so that these kinds of problems can be reviewed and determined whether or not there is a violation of law going on. And I think we had some really great trainings that went on for a good number of years, both after 504 and the Americans with Disabilities Act.
And it’s not that there aren’t really good materials out there that people can read; however, they’re complicated. There are regional technical assistance centers on the ADA, but they’re not getting into addressing all these individual issues that need to be addressed. So, we need to educate ourselves. While kids are in high school and they’re transitioning, they need to have a better understanding of what they need to know when they’re moving on, because there are no more IEPs at the higher education level. There really is an expectation that students are advocating for themselves, and students have not necessarily learned how to do that. And they’re young people.
And just like I was discussing when I was denied my teaching license, it was really a challenge for me to decide whether or not I was going to pursue getting a teaching license. When you’re in high school, when you’re in college, you’re wanting to fit in. You’re not wanting to stand out in many cases. And if you’ve had a hidden disability, it may be something that you really don’t want people to know about. So, there can be many complexities. The bottom line is disabled children and young adults need to understand that there are laws there to help protect them. And I think it’s important for institutions of higher education to also understand that students understand what their rights are. And if there is a violation, they need to do something about it.
I think when I talk about disabled individuals and families, for example, learning about the laws, I also think there needs to be training, as there was previously, with people working at the universities so that they really understand what their obligations are and what their obligations aren’t. And at the end of the day, you want disability services that are really there to help the student succeed, not to make the student feel like they’re failure, not to have dropouts of students that have been accepted to the school and likely could make it through with appropriate support.
JOHN WODATCH: Judy, we have a lot of questions, so I’m going to try to get to a couple of them. Here’s a question that’s near and dear to my heart. The gist of the question is that despite the legislation for the ADA and 504, it feels like full inclusion of people with disabilities in employment, housing, and education has lagged far behind other movements—civil rights movements, women’s movements, LGBTQ rights. Do you agree, and if so, what do you see as holding back progress?
JUDITH HEUMANN: I would say that we have been making progress. So I think we need to look at this as the glass is half full. But at the end of the day, you don’t want the glass to be half full. You want it to be full. Some of the issues that are very important—and I’ve been mentioning them a little bit—is the need for disabled people to understand who they are, that their disability should not be something that should be holding them back, but is an important part of who they are. They need to understand what their rights are under the law, and they need also to be able to have advocates and lawyers and others to help represent them when there are issues—when there are problems. And while there are many more disability rights groups of varying types, many of them are still small and underfunded. And I think we also, while we are making progress within other movements, those other movements have likewise not really learned about some of the basic issues that disabled people face, like in housing, in transportation, in education.
And I think the other civil rights organizations are beginning but really need to be doing more to understand the disabled indigenous population, the disabled Latino population, the disabled Black population, the disabled peoples from the LGBTQ community. They really need to sit down, talk, listen, understand the kinds of barriers that are similar to people within their overall group but may have different nuances.
If you are a person of color or not and you use a wheelchair and you’re trying to rent a place, you might be denied the right to rent because you’re in a wheelchair. Now will they tell you that? They will not tell you that. That means that testers that are going out—you need to have testers in wheelchairs and testers who are not in wheelchairs trying to rent places and see what happens. You need to be able to pair things up.
But at the end of the day, people not only need to understand what their rights are, they also need to be meeting with government agencies. If they feel like their issues are not being appropriately addressed, they need to be doing that. They need to know about the number of complaints. They need to know how the complaints are being reviewed. They need to know the outcomes of the complaints. There’s a lot that needs to be done.
But at the end of the day, I think for the audience, if you belong to other organizations outside of disability groups, you, too, need to be putting a disability lens on the work that you’re doing. You need to be asking, what is our organization doing to ensure that we are appropriately including disabled people. Whether you’re a business, what’s going on with training of hiring managers—are people being hired? If they need support, are they getting it? Are people getting advancements like others? Are there affinity groups that are discussing these issues? What do the disabled employees in your company believe about what it is they’re getting and what more they think they need? Or what they think the company has been doing that has made being a disabled person an asset within the organization?
We need to be smarter. We need to support disability rights groups. I think that’s ultimately where we need to go. And we need new pieces of legislation as well as getting the ones we have appropriately enforced.
JOHN WODATCH: That leads into a question that we have on the Q&A line about the negotiation process in getting legislation like the ADA and the 504. They are interested in from the White House perspective or from an activist perspective, what things you take into account. What kinds of directions are you pulled in? Talk about the process a little bit. I can do it from the White House part. Judy, you can do it from the activist part.
JUDITH HEUMANN: Yeah. I was going to say, John, that we can do this together. When you look at ADA as an example, it was a full court press. It was the Bush administration, the attorney general, Thornburgh, who John worked for, people in the White House and people in the EEOC, and members of the Congress and their staff on the House and Senate side, Democrats and Republicans, who really recognized that there was a national law needed to end discrimination against disabled people in the public and private sector. That the Section 504 regulations were good to a point but we needed something further.
And so I can briefly talk about what was going on externally and quasi-governmentally with the National Council on Disability. There was a gentleman, the late Justin Dart, who is considered to be the father of the ADA. And people like Pat Wright, who worked for a group called the Disability Rights, Education, and Defense Fund. And many other disability rights groups that had people in Washington that were working on developing language but were also working with disabled people around the country.
And the people around the country were doing many things. One is, Justin traveled around the country to get people’s stories. Because stories are very important. Many members of Congress who didn’t have personal experience in disability didn’t really understand the types of discrimination that people were experiencing, or they didn’t view it as discrimination. They didn’t view the denial of a kid going to school necessarily as discrimination. They might’ve been able to say, “Oh, well, they’ve got a disability. It’s difficult.” Blah, blah, blah.
So, there was really a full-court press where groups were working at the state level, at the local level, getting people to meet with their Congressmen and Senators at the same time that there was this really pretty elite group. And elite inasmuch as they were knowledgeable, they were committed. We all had a goal of getting a decent law written, working on the compromising that would have to go on as the law was going through its different stages, and then ultimately being able to work to get the law passed on the House and Senate side. And John was integrally involved with what was going on both at the White House and within the federal government.
JOHN WODATCH: I’ll be very brief, but I think one thing that’s important is that the disability community started working on this in the early eighties. It didn’t happen in a period—this was a very long gestation period. The disability community worked with then–Vice President Bush to have him understand the issues of disability so that when he ran for president in 1988, one way that he distinguished himself from the Reagan administration was saying he was in favor of this legislation.
And the legislation was a very simple, powerful idea. Give to people with disabilities the same federal civil rights protections that African Americans have, that people whose first language is other than English have, that women have. So, it made a revolutionary idea seem evolutionary, and that was a very important part. And you also had in the administration people who had worked on 504. You had strong support in Congress. But I think you can’t underestimate the importance of an activist disability community that was incredibly well organized by Pat Wright and others in terms of working with every Congressional office, pulling together a coalition of other groups—Jewish groups, Catholic groups, veterans groups—that supported the legislation. And so you tried to make it inevitable.
We could go on a long time, but there’s another question, Judy, that’s sort of a fun one, dealing with Crip Camp. It’s up for an Oscar for best documentary feature. What was your experience with the film, and how do you feel about it?
JUDITH HEUMANN: I am so ecstatic. Jimmy Lebrecht and Nicole Newnham and Sara worked on this film for a good number of years. It was a match of Jimmy and Nicole, Nicole having been an award-winning director, Jimmy having been an award-winning sound mixer. Jimmy and Nicole having worked together on a good number of films that she had produced, and he had mixed the sound for that had won awards. And he decided that he wanted to look at making a film.
He remembered that there was footage that was taken at Camp Jened, and the camp itself was very meaningful for him. He was a disabled kid who had never been around other disabled people, so the camp was meaningful for him. And for those people who watch the film, you’ll see numbers of activists moving forward to today were kids who went to this camp.
For me, the camp was very valuable, like many other disabled camps, because it was an opportunity for people to come together. And I went to that camp from when I was like twelve to seventeen, and it was really an opportunity for me to explore with my friends. What did we want to do as we were growing up? What were the barriers that we were facing? We didn’t know other disabled people that were working in many different jobs. Transportation in New York City and around the country was not accessible. Buses, trains, taxis. We didn’t know people that were working. We didn’t know people that were working in a broad range of jobs. So, this was really an opportunity to be with friends and colleagues and just have fun. But we were, throughout those experiences, really looking at the future.
And because we went to Jened or other camps multiple years in many cases, we got to go to camp, go back to school, look at what we wanted to do, look at what was happening positively, recognizing very much that we did not have a movement like the Civil Rights movement or the Women’s Mmovement or the Anti-War movement and that we needed to learn what to do.
So for me, Crip Camp is a very important film. It’s not the be all and end all film because there’s so much more now that’s going on, which is being led by people of color with different disabilities, and all of that is very important. I think this film is—I’m really hoping that it gets the award because the people who did it were experts. It wasn’t just that the Obamas’ Higher Ground took it on, which was amazing, and that Netflix became the distributor. But I think when I was at Sundance last year—Sundance was for ten days—I was there for like four days, I think. And I saw like four or five of the showings. And the film was getting standing ovations. The film was the buzz of Sundance. We were, I think, really knocked over by the impact of the film on the community. And I think one of the important issues really was people saying why didn’t we know this story.
And ultimately, I said at one of the showings afterwards, “You didn’t know the story because you didn’t want to know the story. Because your documentary filmmakers were lovers of documentary film. And subsequently, why didn’t you know this story? Because you didn’t want to see it.” But now I think this has been not only an awakening for disabled people in the U.S. and around the world, but I think it’s really helping to turn a page for those people who have watched the film to really begin to think in a different way about why these problems still exist, why these forms of discrimination, but also a very positive look at what we’ve been able to do and there’s so much more that we still can do.
JOHN WODATCH: Thank you, Judy. There are other questions, but I think our time is limited, and we’re coming to an end. I’d like to just—not answer a question—but just say to Anna that people with mental or psychosocial or psychiatric disabilities belong in all places in our society. The ADA, the 504, the Disability Rights Movement is about all people with disabilities. It’s inclusive, and we have to work to ensure that people with non-physical disabilities feel comfortable and are welcomed in all these environments.
JUDITH HEUMANN: I think there are more organizations that are represented by people with mental health disabilities and are really active in the movement. Certainly, there’s an international group that’s part of the International Disability Alliance, where the voices of people with psychosocial disabilities are really being heard much more. But people with mental health disabilities as well as people with intellectual disabilities are still not being heard enough. And I think that’s one of the important parts of the disability rights movement really bringing more people together and allowing everybody’s voice to be heard.
JOHN WODATCH: Thank you, Judy, and thank you all. Thank you all for participating and staying with us through the technical difficulties. It’s like the disability rights community. We keep doing it no matter what the obstacles. And I want to thank the people from the Virginia Book Festival for their support.
Let me close by saying please consider buying Judy’s book from your local independent bookseller, or you can use the link provided here. You can also check out other events in the all-virtual 2021 Virginia Festival of the Book at VaBook.org. Thank you all. This has been enlightening, and it’s been a little more fun because of the difficulties. Thank you all, and enjoy Judy’s book, and go check out—
And we should also point out that there is a young adult version of Judy’s book that is coming out. I have grandkids who adore this book. At a variety of ages, I think it will be a wonderful teaching tool for people in our society. So, thank you all, and have a good night.
JUDITH HEUMANN: It’s also available in audio.
JOHN WODATCH: Judy with the last word.
JUDITH HEUMANN: It’s also available in audio, read by Ali Stroker.
JOHN WODATCH: Good night, all.
JUDITH HEUMANN: Thank you.