Brooke Gladstone: On Monday, a Netflix documentary called Crip Camp earned an Oscar nomination for best documentary feature. The film tells the story of the Disability Rights Movement and the activists who spent decades fighting for the Americans with Disabilities Act. Borrowing tactics from the Civil Rights and Anti War Movements, they forced Disability Rights into the national conversation.

Protester: They lied about the war in Vietnam. They've lied about every damn thing in the world. They've lied about Watergate and they're lying about how they're treating us. They're lying about how they're treating the physically disabled and mentally retarded in this country.

Brooke: They raised the heat under Richard Nixon, Jimmy Carter, and just about every president since

News anchor: The first family used the side door today to leave Washington's First Baptist Church. The Carters avoided about 20 handicapped persons demonstrating across the street from the door the president normally uses.

Brooke: Judy Heumann features prominently in the movement and the film. She'd later serve as Special Advisor for International Disability Rights for the Obama administration. But first, she was on the forefront of the movement pushing for the Rehabilitation Act of 1973 that barred discrimination on the basis of disability, and especially Section 504 of that act, which defined in real terms what that would actually mean.

She began her journey though, in the early '60s as a camper, and then in the '70s, as a counselor at Camp Jened, a countercultural haven and place of liberation for disabled kids and teenagers. In July, on the anniversary of the ADA, I spoke to Judy about Crip Camp. I told her that I found the film a revelation, and that it left me, for lack of a better word, [unintelligible 00:01:48].

Judy Heumann: I'm really glad you like it. What did you like about it in particular?

Brooke: It doesn't reflect that well on me, but the whole front section about the camp, I suddenly had patience to listen to people that I couldn't understand, to pay attention where I hadn't paid attention before. Like I said, this doesn't speak all that well of me, but all I can say is that I went away from the movie changed. If you had stopped me on the street and said, "Do you think people with disabilities, especially people who can't talk, are lesser than?" I'd say, "Don't be ridiculous." But did I ever stop and hear what they say? First of all, not a lot of contact.

Judy: It's not that people can't speak, but they're not speaking in a way that we typically understand because their speech patterns are different. Another point that you make that's really important, you didn't really know people who had speech disabilities, or probably people with other types of disabilities. Did the film bring you closer to be able to listen to the voices of disabled people in a way you couldn't hear before?

Brooke: I had the opportunity to experience their sense of humor and their depth and their insight, not just their suffering.

Judy: Well, you're presuming their suffering.

Brooke: Not just their struggle.

Judy: Right. Somehow I feel when people look at those of us with disability, they presume that everyone is suffering. Why is it difficult for so many non-disabled people to see us as individual people and look at the absence of us in the community and be questioning, where are we? Why are we not in work? Why are we not on the street? I think it's, people are blocking us out of their mind because they're afraid of being like us.

Brooke: You'd grown up in East Flatbush and you got polio. You couldn't walk. For the early years of your life, though, with your friends and family, you never felt excluded and then you did.

Judy: I had polio when I was 18 months old. We lived in Brooklyn on East 38th Street. I knew that I was different because I had to scream into people's houses to see if kids can come out and play instead of going up the stairs and knocking on the door, but on the other hand, we were all friends. The biggest issue is when I was five years old. I was considered a fire hazard, so I didn't go to kindergarten. The first, second, third, and half of the fourth grade the New York City Board of Education graciously sent a teacher to the house, two and a half hours a week. I started going to school when I was nine years old in the middle of the fourth grade.

I started going to Camp Jened when I was about 12 years old. We're talking about the '60s, the late '50s early '60s. We didn't even have the Civil Rights Act.

Brooke: Could you tell me a little bit about the spirit of the camp, the egalitarian nature of it. There was smoking and messing around.

Judy: We were teenagers. We didn't necessarily have the same opportunities to be going off and exploring sexuality with other people like my friends could in my neighborhood. Camp really was a place to do many things that were typical, but weren't typical to us.

Brooke: Can I play you a piece of tape from Denise Jacobson, a woman with cerebral palsy? She said, "At home, some people had a hierarchy of disability."

Denise: The hierarchy of disability. The polios were on top because they look normal and the CPs were at the bottom, but at Jened you were just a kid.

Brooke: The polios were on top because they look normal and the CPs, the cerebral palsies, were at the bottom, but at Jened you were just a kid.

Brooke: Neil, her husband, who also had cerebral palsy and who she met at camp, recalls his mother telling him she understood why he wanted to marry a disabled girl, but couldn't he have picked a polio?

Neil: [inaudible 00:06:23] a polio.

Speaker: Oh my God. [laughter]

Judy: Definitely, then and now, the more typical you look and sound, the more likely it is you're going to be accepted in the broader community.

Brooke: Was it all as crazy and as glorious as it seemed?

Judy: At Jened?

Brooke: There's a kind of wonderousness, almost like you're Dorothy going from black and white to color.

Judy: I think there's truth in that because we were in a playing field that was equal for everyone. We were not only not left out, but we were also taking the opportunity to think about how we wanted to create a different world. What did we want different?

Brooke: Let's start with what you were up against. You were trying to change America's perceptions of disabled people too.

Judy: I would say that representation of disabled people, where it existed, was on things like the Jerry Lewis Telethon.

[music]

Jerry: At the end of the storm, hold the note right there because I haven't choked up yet.

Judy: The movie A Patch of Blue with Sidney Poitier where he befriends a young woman who's blind. There is the scene where she is dancing, not as a blind person, and the actress wasn’t blind, reveling in not having her disability. Then and now, continual message of having a disability is not good, and in your mind fantasizing what life would be like if only you weren't the person that you are.

In the New York Times we actually-- When I was with this group called Disabled in Action, we had a demonstration outside of the New York Times because we couldn't get them to cover, at that time, disability as a rights based issue. It was raise money, raise money, and cure, cure, cure.

Brooke: At one point, 50 of you blocked Madison Avenue in Manhattan. In that case, you were fighting to bring attention to the Rehabilitation Act, which Nixon had vetoed in 1972. I want to stop and talk about what it was that Nixon had vetoed and in particular the text of Section 504.

Judy: The essence of Section 504 is if you get money from the federal government, you can't discriminate against one based on disability. Section 504 would have prohibited what happened to me when my mother took me to school in the early 1950s. When I was denied my job as a teacher in Brooklyn, the reason I was denied my job was paralysis of both lower extremities. That would have been completely illegal. They would have had to grant me a license because I had passed the oral and I had passed the written.

The other thing is when I took those exams, they were all given in completely inaccessible buildings. That also would have been a violation of 504. Section 504 was really the beginning of an emancipation act, because it didn't cover the private sector, which meant if you got money for Lincoln Center, you couldn't discriminate, but if you were a private theater, you could.

Brooke: Let me hop ahead to 1977. You were interviewed on television and the host asked you--

TV Host: How has the situation changed since 1973? Are you still as upset and angry as you were then?

Judy: What I've tried to do in part is to turn some of that anger around and put it into positive action, and outside of the fact that legislation has been passed, there's been very little actual enforcement.

Brooke: Jimmy Carter, who was president in 1977, claimed he would uphold Section 504, but his secretary of health, education, and welfare, Joseph Califano, he said he was reviewing it, but really, he was weakening it and delaying it.

Judy: The thing about the regulations and why we were fighting so hard to get the regulations that had gone to the secretary's desk, is because there were so many modifications. There was so much compromise that we felt if they made further compromise, that it basically would have gutted the intent of the law. Now, there was an organization that started in 1975 called the American Coalition of Citizens With Disabilities.

It was a very important organization at that time because it was the first national cross-disability organization. Blind people, deaf people, physically disabled people, veterans' organizations, et cetera. One of the prime purposes this group came together, was to fight for the 504 regulation and other regulations to be implemented.

Brooke: There was a great deal of blood, sweat, and tears involved in this effort. A month of your colleagues basically staking out an office, living there in San Francisco, being fed by volunteers, and notably though not surprisingly, the Black Panthers,

Judy: Safeway and Glide Memorial Church and many other groups. The Panthers clearly played the most important role as far as bringing food into the building.

Brooke: This is James LeBrecht, one of the film's directors. Jened alumnus and another activist who was there.

James LeBrecht: I'm amazed at how many people stayed and what these people had to endure. Not having a backup ventilator, not having your usual personal care attendant. Here we're talking about quadriplegics who can't turn themselves during the middle of the night to prevent body sores. And to be sleeping on the floor? That's a recipe for disaster.

Brooke: As one of the leaders of this demonstration, did you ever question what you were putting you and your cohort through?

Judy: No. I didn't, because there was no stigma about leaving. There were plenty of people who couldn't stay, or came for a little bit then left, and then they participated outside in demonstrations which happened every day. Fundamentally, Brooke, these demonstrations allowed a much larger group of disabled people to see that we had rights and that we frequently had to fight for those rights. You could see some of the really powerful changes when for the first time, they felt proud of who they were, that they were making a difference in this. They were part of a bigger movement to break down the barriers which were prohibiting us from living our lives in an equal way.

Brooke: One of the most striking moments from the film was when the 504 sit-in was over. You're meeting with a group of activists. You were asked how you feel, and as a viewer, I'm expecting you to be jubilant.

Judy audio clip: On the one hand, I'm sitting here feeling like I should say everything is wonderful. I'm very tired of being thankful for accessible toilets. I really am tired of feeling that way. If I have to feel thankful about an accessible bathroom, when am I ever going to be equal in the community?

Judy: I've talked about bathrooms a lot in my life publicly because it makes people uncomfortable. Because no one wants to think about what would it be like for me if I couldn't go to the bathroom? But if one could think about not being able to go to the bathroom for basically a day, and that being repeated over and over again, which is what many of us experience on a regular basis.

One of the values of the ADA 30th anniversary is not only to talk about the positive changes that have happened, but to also look at what we need beyond these laws. We need enforcement, money being put in to train disabled people on what their rights are, because many disabled people and non-disabled people in the US have no idea what the Americans with Disabilities Act is.

Brooke: What was the significance of it?

Judy: It covers the public and private sector. If you go to apply for a job, they cannot deny you the right to interview you because you have a disability. Transportation having to be made accessible, buses and trains, sign language interpreters, captioning, the ability for blind people to be able to vote. The Americans with Disabilities Act was and is an emancipation proclamation because it has granted 61 million disabled people rights that we didn't have before.

Brooke: The Black Lives Matter movement seems to catalyze an incredible amount of change in a very short period of time but many of its supporters fear that its more ambitious goals are still years off. As someone who's seen things change, in part due to your efforts, what can you tell us about how change takes shape? Do you have to be patient? What do you need?

Judy: Patience is not something that I believe in. A common message that people were putting forth at Sundance is why didn't we know this story. I finally said, "You didn't know this story because you didn't want to know this story. You didn't know what to do with this story." If you're really moved by this, then you need to do something about it. You need to learn about what your field is, and how disability needs to be integrated. We're at a period of time where we are going to have to fight for our rights. Where we also have to fight against what the hell is going on in Oregon with federal intervention, it's very scary. We need to be a part of a movement that believes that we all need to make a change.

Brooke: Judy, thank you very much.

Judy: Thank you, Brooke.

Brooke: Judy Heumann is the author of Being Human, an unrepentant memoir of a disability rights activist, and she's the subject of a new Netflix documentary called Crip Camp. Thanks for checking out the podcast extra. If you'd like to help other listeners find us, consider leaving us a review on your podcast app of choice. See you on Friday for the Big Show. I'm Brooke Gladstone.

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