by Annabelle Long
Annabelle Long is an Undergraduate Research Apprentice at the Oral History Center. She worked with Shanna Farrell during the Spring ’21 semester. Annabelle is a third-year History and Creative Writing student from Sacramento. She works as a conduct caseworker in the Student Advocate’s Office and enjoys going on long walks in Berkeley. You can find her on Twitter @annabelllekl.
I watched the 2020 documentary Crip Camp to get a sense of Judy Heumann, the disability rights icon and architect of a movement that created a more accessible world. I had only recently read her oral history, conducted by UC Berkeley’s Oral History Center, and I was eager to learn more about the woman behind the words on the page. When she is first shown in the film, she is doing what I’ve learned that she does best: leading a group. She has a big voice and a bigger grin, and talks campers through their options for dinner later in the week. She’s already thought it through—she considered veal parmesan, but found the veal to be too expensive, so next on her list is lasagna, the suggestion of which elicits both cheers and groans from the crowd. She offers everyone a chance to make their case, and then takes a vote. Lasagna wins—barely. This vote, in its consequences, probably meant very little to Judy and very little to everyone else. But in my mind, it makes one thing clear: Judy didn’t make any decisions without considering and consulting the group. She cared what people had to say, and she listened. And so campers had lasagna, and eventually, thanks to her activism, disabled Americans had laws to protect them.
Crimp Camp provides a snapshot of the disability rights movement through the lens of Camp Jened, a summer camp for disabled children and teenagers that opened in upstate New York in 1951. Each summer, about 120 campers moved in for four to eight weeks. The camp, despite often being credited with changing the lives of its campers, had immense financial struggles and closed its doors in 1977, leaving its legacy in the hands of the many campers who passed through. Judy contracted polio and became paralyzed at 18 months old, and for every summer from ages 9 to 18, she was one of those campers. She credited her time at Jened with shaping her approach to activism and life generally.
Jened resembles the woodsy summer camps of my childhood, but it had more of a Summer of Love aura about it—the rec room was boisterous and the softball games were passionately played, but at Jened, counselors were hippies, campers fell in love, and the bunkrooms and mess halls overflowed with eager conversations about the state of disability rights and the world. It was in those conversations, Judy would go on to say, that she learned to listen to a group, lead a group, and speak as a part of a group. To Judy and the other campers, Jened was more than a camp: it was a place to be fully and truly oneself, a place to try out new politics, and often, a place to meet close friends and lovers (Judy even said she never dated outside of camp). It almost seemed sacred.
Jened is both a moment and an enduring feature in the history of the disability rights movement, and Crip Camp seeks to understand it as both: as a physical place, where people gathered and grew, and as a concept, a memory and idea that endured well beyond the summers it operated. Oral history, as a practice, seeks to accomplish something similar. It draws on memories of particular moments, the feelings that make something worth remembering, and unites those memories with broader historical narratives to give a complete picture of a life and a time. But I can’t help but wonder—what does it mean when a story continues after the taping is done? When the end of the recorded narrative turns out to be the midpoint of a real and full life?
Judy Heumann’s oral history focuses on her time UC Berkeley, where she received her master’s in Public Health, and the 504 sit-in of 1977, which she was critical in organizing. For 25 days, Judy and well over 100 disabled people occupied the San Francisco office of the United States Department of Health, Education, and Welfare and demanded enforcement of Section 504 of the Rehabilitation Act of 1973, which stated that no institution receiving federal funding could exclude people on the basis of their disability. Judy’s activism in 1972 was critical to getting Section 504 written in the first place, and she and other disabled people were tired of it being completely unenforced—schools, cities, and buildings were still inaccessible despite the law’s promise. Schools lacked elevators to allow disabled students to get to their classrooms; sidewalks lacked defined dips in the corners and thus often forced wheelchair users to take inconvenient, circuitous routes to their destinations or left them stranded. In response, disabled people occupied government buildings across the country in protest. The San Francisco demonstration was the longest lasting and arguably the most successful, largely thanks to the motivating force that was Judy Heumann.
In Crip Camp, Corbett O’Toole, a disabled activist and one of Judy’s contemporaries at the Center for Independent Living at UC Berkeley, said that “we were more scared of disappointing Judy Heumann than we ever were of the FBI or police department arresting us.” This was because Judy served as the central organizing force of the occupation—she held down the fort, ensured people’s needs were met (no easy task when many occupiers required around-the-clock physical assistance), and negotiated with government figures to advance the cause. I’d be scared to disappoint her, too.
There’s no debate about her status as an organizing powerhouse. In the early days of the disability rights movement, everyone in her orbit seemed to recognize that she had a knack for getting people together, getting people to listen, and perhaps most crucially, getting people to act. Mary Lester, a staff member at the Center for Independent Living spoke about Judy in her own oral history and credited her with the movement’s expansion.
“Judy was the one who brought in deaf services and was the one who always wanted to expand the population we were serving. She was pushing us in those directions to broaden the coalition. She was a networker supreme,” she said, “Judy wanted to push CIL as far as it could go in terms of being a model and being a pioneer and bringing all of the different disability factions, if you will, together.”
Judy was meticulous and thoughtful in her activism; no stone went unturned, no idea went unexplored, and no voice went unheard.
“We had the civil rights aura, but we had the facts,” she said of the Independent Living Movement, which she helped develop in Berkeley, “I mean, I think the civil rights aura without the facts actually doesn’t get you where you need to be. But the facts without the civil rights perspective doesn’t necessarily get you there either.”
Berkeley, as a city and community center, played a critical role in shaping the 504 sit-ins and the disability rights movement more broadly.
“Well, you know Berkeley is a small community, period. And many of the people certainly at that time were activists. And you lived on the same block with somebody, or a couple of blocks away,” she said, starting to laugh, “And that’s just the way it is. It’s a town.”
UC Berkeley was to Judy and her friends what Jened had been to them in their youth. Crip Camp gets at this: many of Judy’s friends from her camp days eventually made the same westward journey that she did, and ended up in and around the UC Berkeley community. There, they took the community they’d built in upstate New York and turned to activism. Jened taught them the importance of their community; Berkeley taught them how to fight for it.
Judy Heumann recorded her oral history with UC Berkeley’s Oral History Center in 2007, decades after her time at Camp Jened and some of her most well-known organizing efforts. Since then, she’s lived nearly another decade and a half—enough time to feature in an Oscar-nominated documentary, host a podcast, produce a research paper on improving media representation of disabled people, publish a memoir, and work on advancing disability rights internationally as a special advisor to President Obama in the State Department.
She spoke about her international ambitions and hopes for the disability rights movement in her oral history, before Barack Obama was even the Democratic nominee for president; before there was even an inkling that her role as his special advisor on international disability rights would ever exist. In this way, oral history provides us with a window into her mind, a snapshot of a moment in the unfinished history of the disability rights movement. This, perhaps, is part of the value of an oral history conducted before the end of someone’s life—it reveals the in the moment motivations and thoughts behind future actions, and is definitionally more than just temporally distanced reflection or speculation about how and why something occurred.
Judy Heumann at the 2021 Academy Awards
In the same way that Crip Camp sought to capture multiple dimensions of Camp Jened and its legacy, looking at Judy Heumann’s oral history in light of the more recent years of her life allows for a complex and interesting portrait of her and her accomplishments. As a history major, the people I study often never lived to see the worlds that they created, so it is especially wonderful to know that Judy Heumann saw the disability rights movement from its inception to a piece of storied history behind the world as we know it now.
“But you know, you walk up Telegraph Avenue, you go to Rasputin’s, and you see this history of the disability movement, and the owner of the store proudly displaying history of the disability rights movement on a building,” she said in her oral history, “You see, I go into a restaurant yesterday and there are two young disabled people coming in from Berkeley sitting down and having lunch together. The waiter’s moving the chairs out, and I’m like, oh, I guess two people in chairs are coming. And these things are natural now, because there is such a large number of people here that the community itself has become more accepting. It’s normal.”
I am a student at UC Berkeley and I live a block from Telegraph Avenue; between me and Judy’s tangible legacy sits a sidewalk that slopes down at the corners for wheelchair access. The world is not perfectly accessible, and there is still much to be done to ensure that disabled people’s rights are protected, but I like to think about how my normal is the product of Judy’s life’s work.