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'Crip Camp' Star Judith Heumann Explains How Summer Camp Led To A Disability Rights Revolution

April 28, 2020 Judith Heumann
Courtesy of Beacon Press

A rundown camp in the Catskills ended up fomenting the disability rights movement. That’s the remarkable story told in the acclaimed “Crip Camp” documentary, which was produced by Barack and Michelle Obama and is now on Netflix. 

The documentary has won raves for its unflinching depiction of how Camp Jened brought together young people with wide-ranging disabilities and allowed them to experience life without their parents. The community they formed and the self-reliance they cultivated within it led to the landmark 1970s protests that opened doors for disabled people — and, ultimately, to the Americans with Disability Act.   

On Tuesday’s St. Louis on the Air, disability rights activist Judith Heumann explained how camp helped fuel her future activism. A bout with polio in Heumann’s infancy left her a paraplegic; she began to use a wheelchair even before motorized versions were invented and had to fight to be allowed to attend school. Her local public school initially rejected her as a “fire hazard.”

Camp, where so many kids with disabilities thrived, was different.

A big part of that was the independence of no longer having to rely on parents for assistance. At camp, Heumann had choices for the first time. Sometimes those choices were as simple as what she wanted to wear, she recalled. 

“Camp went from enabling me and others to see how choice was important, and then it escalated into much broader areas of discussion and thought,” she recalled. “What did I want to be when I grew up? How come other people weren’t talking to us who had disabilities about what we wanted to be? We didn’t see ourselves reflected in media. What was going to happen to us?”

Heumann said details in the film — as well as her memoir, “Being Heumann: An Unrepentant Memoir of a Disability Rights Activist” — are often shocking to younger people without disabilities.

“I think for many disabled people also, they are surprised about it, but not as surprised,” she said. “Because while the kinds of discrimination that existed in the ’40s, ’50s and ’60s, where kids could be denied the right to go to school, and have to have home instruction and a teacher come to your house [are no more], discrimination is still something disabled people face on a pretty regular basis. They may not know about that kind of discrimination, but they can relate it to what they’re facing today.”


Joining the discussion was Colleen Starkloff, co-founder of St. Louis’ own Starkloff Disability Institute. She spoke about how her husband, the late Max Starkloff, helped to lead a disability rights revolution in St. Louis, mirroring the activism depicted in the film.

St. Louis on the Air” brings you the stories of St. Louis and the people who live, work and create in our region. The show is hosted by Sarah Fenske and produced by Alex Heuer, Emily Woodbury, Evie Hemphill, Lara Hamdan and Joshua Phelps. The audio engineer is Aaron Doerr.

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Sarah Fenske served as host of St. Louis on the Air from July 2019 until June 2022. Before that, she spent twenty years in newspapers, working as a reporter, columnist and editor in Cleveland, Houston, Phoenix, Los Angeles and St. Louis.