“Crip Camp”: When Disability Rights Became Civil Rights

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.”

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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.

What the ADA Means to Me

30 years ago this week, George H. W. Bush signed the Americans with Disabilities Act, which had been passed by a bipartisan Congress. Change for people with visible disabilities came quickly. Curb cuts became the norm, and allowed people in wheelchairs to cross the street. Wheelchair ramps aided not just wheelchair users but people with strollers or walkers. Braille became standard on public signage. Every governor and mayor had an ASL interpreter at his or her side when speaking in public.

Less easily or quickly addressed was the invisible disability of hearing loss. It is thanks to Rocky Stone, the founder of the Hearing Loss Association of America (then called SHHH), that hearing loss was included in the list of disabilities covered. One essential accommodation — in my opinion the most important for people with hearing loss — was the development of CART captioning. This photo shows one of my early experiences with it, speaking to a hearing-loss group.

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CART captioning.

On the 20th anniversary of the ADA, ten long years ago, I had recently quit my much loved job as an editor at The New York Times. I couldn’t hear well enough to manage the many meetings and phone calls and other requirements of the job. I could have asked to be transferred to a position which would not have required so much public and workplace interaction, but I was worn out from many years of trying to keep up. The obstacles seemed insurmountable. The technology was not very good.

Today, ten years later, the accommodations that would have made the workplace accessible to me exist, and I would have had the confidence and determination to ask for them and to use them.

I would have asked for CART captioning in all company-wide meetings. I would have asked for a conference room in our department to be looped, and for my department’s meetings to be held in that room. I would have asked for looping for the larger conference room, where Page One and other meetings were held. I would have asked for a captioned telephone. I would have used my own smart phone for calls, using the captioning app Innocaption+. I would have used speech to text captioning in smaller groups: Otter for the iPhone, Google Transcribe for an Android. I would have asked people – probably over and over and over again – to look at me when they speak, not to talk over each other, to repeat key phrases if I miss them or to paraphrase them.

Other benefits for people with hearing loss that stem from the passage of the ADA involve FCC requirements for cell phones and landlines to be compatible with hearing aids. Movies are captioned (usually via a device you ask for at the theater), television is captioned. The governor or mayor will include a CART captioner as well as the ASL interpreter for public events. Hearing loops allow people to hear in public spaces simply by changing the program on a hearing aid. This is really just a smidgen of the changes that have come about. Readers, please suggest others that have been meaningful to you.

In my term as president of the New York City chapter of HLAA, I was part of groups advocating for accommodations in the public and private spectrum. One of my proudest moments was the signing in 2016 of two bills by Mayor Bill De Blasio that advanced accommodations for people with disabilities. These in fact served people with hearing loss but also all New Yorkers, as many accommodations do. The first required all city agencies to have a disability-services facilitator on staff and to publicize the name of the person and contact information. The second required that meetings and other events must include information about accessibility on the announcement or invitation. (Prior to this bill, a person with hearing loss might go to an event that had been advertised as hearing accessible and find only an ASL interpreter.)

The picture shows some of the people who made those changes happen.

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Left to right, Katherine Bouton, HLAA member and advocate Ruth Bernstein, Co-sponsor of the bills City Council Member Helen Rosenthal, HLAA member and advocate Jerry Bergman, Mayor Bill De Blasio. (I can’t identify the  two men in the background.)

 

The following year the mayor signed a another bill, requiring installation of hearing loops in all new or renovated city buildings with a base cost of $1 million. And shortly after that, the historic landmarked City Council Chamber in City Hall was looped.

The fight for accommodations is in no way over, but it’s being waged. The pandemic has revealed the essential need for transparent masks in medical settings. Another of our chapter members, Toni Iacolucci, is working with New York City’s massive hospital system to make hearing accommodation available.

In 2016, at the New York Yankees’ annual Disability Awareness Night, our chapter received an award from the Mayor for our contributions to a more accessible New York.

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Left to right, Katherine with the citation, Toni Iacolucci, Deputy Commissioner for People with Disabilities Kleo King, Commissioner Victor Calise.

We have a long way to go in getting full accommodation for people with hearing loss. But the ADA gives us the legal means to continue our fight. Perhaps as important, the ADA has raised awareness of discrimination against people with disabilities and their rights for equal accommodation. Let’s hope by the 40th anniversary we won’t have to be working so hard to provide access to all people, no matter how severe their disability is, or how invisible it is. Thanks to HLAA for leading the way.

I Have a Disability. How About You?

December 3rd (that’s today) is National Disability Day, a United Nations recognized event also known worldwide as the International Day of People with Disability.

National Disability Day promotes education about the needs of people with disabilities as well as compassion and understanding of the challenges they face.

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Some disabilities are visible at a glance. People dependent on wheelchairs for mobility may have different degrees of severity of physical impairment but if they need a wheelchair, for whatever reason, they are eligible for accommodations under the Americans with Disabilities Act.

Hearing loss, on the other hand, is not only invisible but not everyone with hearing loss is disabled. Mild hearing loss is not usually a disability. Severe to profound hearing loss is, and these people are entitled to accommodations under the ADA. But many who have severe and even disabling hearing loss refuse to acknowledge it, fearful of stigma and discrimination. In order to get accommodations under the ADA, you must acknowledge disability. Many are unwilling to take that step. That complicates advocacy for all of us with hearing loss.

Deputy Inspector Daniel Carione of the New York City Police Department put this eloquently in a talk he gave at a meeting of HLAA’s New York City Chapter last spring. Carione was a 22-year much-decorated veteran of the NYPD when he was forced to take early retirement in 2011. The reason? He wore hearing aids. He decided to fight the ruling. Before he had any legal ground to stand on, he told the audience, he had to make an important admission to himself.

“The Americans with Disabilities Act is not this heroic shield that falls from the sky and protects each and every person who may or may not be disabled,” he said. “You have to be disabled. That was very difficult for me to accept.”

Dan Carione does not look disabled. He was—and is—a powerful physical and intellectual presence. To use the word disabled about himself defied the visible reality. But his attorney knew that admitting disability was essential. “One of the first things she taught me was to use the word disabled. It’s counter-intuitive. It hit me in the head like a dart because I didn’t want to use the word disabled. But if you’re not disabled, the ADA can’t protect you.”

As a hidden disability, and one with stigma attached, hearing loss is often not acknowledged. This harms not only those who refuse to acknowledge it but it also makes getting accommodations for the rest of us even harder. If a movie theater thinks you’re the only person in the audience who needs captions, that makes it easy to say it’s an expense they can’t afford. I go to a movie theater in the small town where I live part time. The audience is preponderantly gray. Statistics tell us that many have hearing loss that is severe if not disabling. Half of those in the United States 75 and over have disabling hearing loss, according to the NIDCD. But you’d never know it because you can’t see it and they aren’t talking about it.

So on this National Disability Day, if you have hearing loss and can’t hear a speaker at a lecture or at your place of worship, can’t hear at a movie, can’t hear that airline announcement, speak up. Ask for a hearing assistive device. Ask for captions. Ask for accommodations. Speak up for yourself, and you will be speaking up for all of us.

 

For more about hearing health, my book “Smart Hearing.” will tell you everything I know about hearing loss, hearing aids, and hearing health.Smart Hearing Cover final

You can get it online at Amazon or Barnes & Noble, in paperback or ebook for Kindle or Nook. You can also ask your library or favorite independent bookstore to order it.