Last July I wrote about the 30th anniversary of the Americans with Disabilities Act, signed into law by President George Bush in July 1990. I wrote about how dramatically it changed life for people with disabilities, and how fortunate I felt to be a beneficiary of this act. My post was called What the ADA Means to Me.
Now a stunning documentary, Crip Camp: A Disability Revolution, charts the origins of the disability-rights movement, which culminated (but did not end) with the signing of the ADA.
The story begins in 1971 at Camp Jened, a summer camp in the Catskills for teenagers with disabilities. Many of them had severe disabilities, but the loose, free spirit of Camp Jened allowed them to act like teenagers – dancing, smoking pot, making out. Their exuberance is contagious. It also gave them a chance to discuss the experience of disability in its many forms.
The opening scene of the movie is a home video of a toddler, James LeBrecht, born with spina bifida, literally catapulting himself around his parents’ home, throwing himself up stairs, metaphorically swinging from the chandeliers. We next see him in 1971 at Camp Jened, wheeling himself with the same jubilance he had as a toddler. LeBrecht, who directed, produced, wrote and is a central character in the documentary, is just one of the activists who got their start at Camp Jened and went on to change the world.
Judith Heumann lost the use of her legs to polio when she was two. Even at camp, she was clearly a leader. She would later become a noted disability-rights activist and was named Special Advisor for International Disability Rights by President Obama. (Barack and Michelle Obama are executive producers of “Crip Camp.”) Denise Sherer Jacobson, born with cerebral palsy, met her future husband, Neil Jacobson, who also had cerebral palsy, at Camp Jened. “Why do you have to marry a handicapped girl?” his parents asked when he told them he and Denise were getting married. “Why can’t you find a polio?” Heumann and the Jacobsons, as well as James LeBrecht, the force behind this film, are just a few of those whose independence and spirit were fostered by Camp Jened.
In 1977, Judith Heumann led a groundbreaking protest in San Francisco, called the Section 504 sit-in. Disability activists occupied a federal building for almost a month, demanding greater accessibility for all. Their victory was euphoric, but very soon they realized it wasn’t enough.
“I’m tired of being thankful for accessible toilets,” Heumann says. “If I have to be thankful for an accessible bathroom, when am I ever gonna be equal in the community?”
Two years after the Section 504 sit-in, Judith Neumann led people with disabilities from all over the country to Washington D.C. to stage a protest at the Capitol. The footage of demonstrators pulling themselves up the Capitol steps, because there were no wheelchair ramps, made me gasp.
In a 2016 Ted talk, Heumann told some of the stories behind the protest, including her own. As a child who lost the use of her legs to polio, she was told by a school official that she could not go to school because she was a “fire hazard.” Don’t worry, the principal said, we’ll send someone to your home, which they did, for a total of two and a half hours a week. Judy was eventually allowed to go to school, but when she got to high school, not one New York City high school was accessible. Her friends carried her up the steps. After she got a degree in teaching, she easily passed the written and oral tests to apply for her teaching license. But then came the physical test. “How do you go to the bathroom?” an interviewer asked her.
In her Ted talk, Heumann reminds us that, 40 years on, there’s still work left to do. Denise and and Neil Jacobson are still married and still activists, whizzing around Oakland in their mobilized wheelchairs, Denise’s graying hair highlighted with purple. What an extraordinary group of people. The movie is nominated for an Academy Award for Best Documentary Feature. It’s now available on Netflix.
The fight for equality is not over. Last week, Edith Prentiss, a longtime advocate for people with disabilities, died in New York at age 69. A fierce activist, Edith seemed to be everywhere in her motorized wheelchair, making her voice heard – making all our voices heard. In the words of Victor Calise, New York City’s Commissioner for People with Disabilities, she was an advocate “for everyone and anyone, understanding that the disability rights movement was not just for people who use wheelchairs but for every person with every type of disability.”
For more about living with hearing loss, read my books “Smart Hearing: Strategies, Skills and Resources for Living Better With Hearing Loss” and “Shouting Won’t Help: Why I and 50 Million Other Americans Can’t Hear You.” Both are available as ebook and paperback on Amazon.com.