From Noncompliant Bodies to Civil Disobedience

From Noncompliant Bodies to Civil Disobedience

From Noncompliant Bodies to Civil Disobedience

Lessons from Crip Camp, a new documentary that explores the roots of the disability rights movement.


When I first rolled into the San Francisco Bay Area in the summer of 1983 to start graduate school in US history at the University of California–Berkeley at the tender age of 22, it took me a while to find affordable housing. At first, I lived with some family friends, way out in the East Bay suburbs. I drove my car into Berkeley every day and parked it in a cheap lot several blocks from campus on Telegraph Avenue, directly across the street from a low-slung office building that housed a nonprofit organization called the Center for Independent Living. The CIL was a hub for disability services and a gathering spot for the local disability community, and becoming familiar with it was just one of a few million new things that marked the transition from my small-town Southern roots into Berkeley’s heady political and intellectual culture as a young adult. CIL was such a part of my landscape that I didn’t realize then, and am still coming to appreciate now, that it was the epicenter of a radical movement for social transformation that fundamentally changed the world we live in.

Crip Camp, a powerful new documentary from Barack and Michelle Obama’s Higher Ground production company, fills in the CIL backstory while fleshing out the broader accomplishments of disability activism at a time when changing the world has never felt more urgent.

Judith Heumann arrived at the CIL in 1975. She was then a charismatic 27-year-old from the boroughs of New York who had polio as a child. She’d been invited to serve as the center’s deputy director by its founder, Ed Roberts, a former Berkeley student who had been instrumental in pushing the university to provide services for disabled students at a time when there were none. Heumann was already a seasoned activist. Like Roberts, while still in college she had educated, agitated, and organized to win such basic campus accommodations as wheelchair ramps and the right to live in a dorm room like other students. She’d sued the Board of Education of the City of New York for denying her a teaching credential on the basis of her disability, and successfully settled out of court to become the first wheelchair user to teach in the city’s public schools. Building on these victories, Heumann founded Disabled in Action in 1970, and soon found herself at the forefront of a burgeoning movement.

Crip Camp offers its viewers their first glimpse of Heumann in stunning archival footage from the early 1970s, shot by the People’s Video Theater, that documents the staff and residents of Camp Jened, a summer retreat for people with disabilities near the Catskills Mountain town of Hunter, New York. Once owned by the United Cerebral Palsy Association and serving since the late 1940s as a getaway for people with cerebral palsy, autism, and Down syndrome, by the 1960s Camp Jened had become a hotbed for radical approaches to disability. Its practices were informed by the social movements of the day—as well as the countercultural ethos that infused the storied music festival in nearby Woodstock during the summer of 1969.

Without minimizing the kind of suffering that can attend some disabling physical conditions, or romanticizing the daily survival of individual people with disabilities as an especially brave or heroic way of being, something utopian is clearly visible in the footage of Camp Jened for anyone who yearns for a social order built on egalitarianism, respect for difference, attention to actual needs, and practices of mutual care. Staff and residents alike are racially integrated. Hierarchies between campers, counselors, and administrators appear nonexistent. Routine acts of kindness, compassion, and acceptance abound.

Norms of gender and sexuality, as well as common social etiquette about touching and physical intimacy, soften in response to basic human needs. Young people goof around, flirt, fall in love; they express outrage over the injustices of the world and dream of a better future. And right in the middle of it all is a perky Judy Heumann, former camper turned counselor, enacting the disability movement credo of “nothing about us without us” as she leads a group of residents in planning their menu through a collective decision-making process.

Jenedians, as the camp’s alums call themselves, seeded the networks of the early disability movement. They had experienced at Jened a world that didn’t devalue their lives, constrain their access to it, and quash their every ambition. Disability, they saw, was not the consequence of their non-normative bodies but of their noncompliance with ableist norms unthinkingly built into their social environment. Knowing in their bones that a different life was actually possible, they set out to make their wider world a more accommodating place. Many of them, like Crip Camp’s codirector Jim LeBrecht, featured interviewees Denise Sherer Jacobson and Neil Jacobson, and Heumann herself migrated to the San Francisco Bay Area, where they teamed up with “Left Coast” disability activists like Ed Roberts and forged a national movement.

The most riveting section of Crip Camp documents the so-called “504 sit-in.” Section 504 of the federal Rehabilitation Act of 1973 drew language and inspiration from the Civil Rights Act of 1964 and extended similar antidiscrimination protections to people with disabilities. It was the first time that people with disabilities were recognized as members of a minority group who experienced unequal treatment under the law, rather than being considered mere unfortunates suffering from some medical condition.

But implementation of Section 504’s provisions lagged across the Nixon, Ford, and Carter administrations until Heumann and fellow activist Kitty Cone issued an ultimatum and set a deadline for compliance. When the deadline passed and Joseph Califano—Jimmy Carter’s secretary of Health, Education, and Welfare—still had not signed off on the authorization to implement the civil rights protections, disability activists and their supporters occupied HEW Offices in 10 cities across the United States. The occupation in San Francisco last 28 days, from April 5 to May 4, 1977—still the longest sit-in protest to date of a federal office. In the end, the Carter administration relented, Section 504’s antidiscrimination provisions were implemented, and the successful sit-in set off a cascade of consequences that culminated in passage of the Americans with Disabilities Act of 1990.

Watching footage of the San Francisco 504 sit-in offers a timely reminder of just what can be accomplished when various groups who need a different world express solidarity with one another. The Black Panthers delivered food to the protesters, and members of the gay and lesbian community showed up to provide personal assistance with hygiene. But watching that footage was, for me, a somewhat bittersweet experience—not because I wasn’t inspired by the punk rock spirit of their DIY actions, but because it threw in my face just how much of the radical Bay Area culture that nourished and shaped me in my 20s has disappeared.

I saw people I once saw day in and day out, wheeling down sidewalks of Telegraph Avenue, who are no longer alive—the closing credits of Crip Camp are a somber reminder that not all of us live an average lifespan. I glimpsed others I knew casually through the labor movement when I was shop steward for the UC-Berkeley History Department in the Association of Graduate Student Employees, as well as my elders in the queer community that would become a home over 1980s, and gained a greater appreciation for the strengths and life experiences that later made them such good comrades and allies for me. Mostly, I saw a social fabric woven of a bold and fearless people, tattered first by the AIDS crisis and later by the waves of displacement and gentrification that came with the new tech economy, that I sorely miss. It would be so good to have that fabric to fall back against, now, as the world unravels amid the unprecedented challenges of the Covid-19 pandemic. Alas.

We will all be searching in the coming weeks and months for a way forward from the present moment. Many of us will be struggling with compromised health. As we hunker down and huddle around our screens of streaming media, we could do far worse than learn whatever lessons Crip Camp might now teach us.

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Katrina vanden Heuvel
Editorial Director and Publisher, The Nation

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