Judith Heumann: ‘Biden is dedicated to involving disabled individuals in his administration’ | Incapacity

“If people say no, I really have to do something about it,” says Judith Heumann, US pioneer in disability rights, who advised Presidents Clinton and Obama.

As a young activist, Heumann fought the New York School Board in 1970 to become the first person in a wheelchair to teach in city schools. Her influential campaigns include the 504 Sit-In, a month-long occupation of a federal building in San Francisco in 1977 that enforced civil rights protection for disabled people. That success paved the way for the Americans with Disabilities Act (ADA) in 1990.

Now she’s the star of a Netflix documentary, Crip Camp. The film – supposedly about a summer camp for disabled youth in the New York Catskills in 1971 with a mood likened to Woodstock – shows the birth of the American disability rights movement. Heumann, who had polio as a child, is a fascinating central figure. The documentary reflects her journey from the leader of the summer camp to a pioneer for disability rights.

Judith Heumann, who fought for the rights of disabled people at the 504 session protest in San Francisco in 1977, from the Netflix documentary Crip Camp Photo: Netflix

Today, at the age of 72, Covid is Heumann’s greatest concern, as disabled people are disproportionately affected by the pandemic. Thirty years since her activism helped secure the ADA, the virus has put the importance of the law at the center. For example, in Alabama, the state ruled that people with learning disabilities were not entitled to ventilators that were on ration. However, the Civil Rights Office ruled this was against the ADA and the decision was reversed.

For Heumann, Trump’s failure to fight the pandemic has exacerbated the challenges (“we [America] didn’t take the measures we should be taking early on ”) and she is concerned about the economic impact of the virus. “What impact will the financial situation at the local level have on the money for private and municipal services? People who live in institutions, nursing homes, or other groups are much more likely to die than those who don’t. To prevent that from happening, we need money so that people can live in the community. “

Her relief when Joe Biden won the election was physical: “When it happened, I found that this type of sweat was there – I don’t sweat much at all – but I felt like toxins were leaking out.”

Biden, she says, “is committed to bringing the disabled community into administration”. Disabled people were involved in drawing up its disability policy, she added. The role of special advisor on disability (recognizable by her absence under Trump), which she held under Obama, is waiting to be filled. When asked whether Biden invited her to take the post again, she remains on the lips. “Nobody asks anything now,” she says firmly.

Heumann says her fighting spirit and optimism stems from her ex-Marine father and mother as community organizer, who made their young daughter feel equal. She had piano lessons instead of occupational therapy, for example “because my parents saw that my brother and I could do that together”.

They “were creative and supportive and were lawyers … they didn’t allow the low expectations society had of me,” says Heumann.

She remembers her father defying a teacher who clearly refused to have a wheelchair-bound student on stage for her high school diploma award. With no access ramp, a dejected and humiliated hayman wanted to leave, but her proud parents insisted that she take her rightful place and lift her chair onto the dais.

Her parents encouraged her to register first as a camper and then as a camp leader in the summer camp. As a result, Heumann got to know various disabled people with whom she later worked in the emerging American movement for disability rights. “I had never met anyone who was deaf and there were also blind campers. Those engagements, meeting with deaf campers and learning sign language really made it possible for more of us to understand the discrimination we faced in various forms. We really wanted to be able to do systemic reforms and we couldn’t if we were in our own little one [disability] Category.”

Heumann’s first real struggle as an adult was when New York education officials denied the young, fully qualified graduate a license to teach after deciding that they could not take themselves or their students out of school in a fire (buildings were inaccessible at the time). She sued for discrimination. She recalls the case in her most recent paper, Being Heumann, which was longlisted for the Barbellion Literature Prize: “It didn’t matter how smart or capable I was … because I couldn’t walk, I wasn’t considered qualified as Second to teach -grader. “

To what extent has discrimination been eliminated 30 years after the ADA? She is pragmatic: “Discrimination has been around for hundreds and hundreds of years. I never thought that a law like the ADA, as good as it might be, would be able to make the kind of changes that I and other disabled people would like [just] 30 years later.

Judith Heumann at the Crip CampJudith Heumann: “If you look at disabled people, families and friends, we have learned a lot of things … how to be resilient, how to keep fighting, how to develop.” Photo: HolLynn D’Lil / NETFLIX

“One of the reasons I think laws like the ADA and the UK laws are important and need strong enforcement mechanisms is because I want to make it clear that if someone does something that is discriminatory, action can take place. ”

She adds, “One cause of discrimination – in any group – is the lack of bread, breakdown, not being together, and misinformation. If people lived in the same communities and worked together, we would ultimately have a greater sense of responsibility for one another, ”says Heumann. “The dramatic changes that must take place will only occur when we recognize our humanity as human beings, regardless of our differences.”

She believes that ignorance is partly responsible for negative attitudes. “Fear is the biggest problem, then pity and patronizing because people don’t know what to do [when they meet a disabled person], they don’t see you as the same. “

One way to address this is to treat disability issues in literature and history the way gender and black studies are now taught, says Heumann. Better representation in the media and the arts is also crucial.

As Netflix introduces Heumann to a whole new audience, she hopes the positive changes brought about by the disability movement will inspire further action: “When we look at disabled people, families and friends, we’ve learned a lot … how to be resilient how to keep fighting, how to keep moving forward. “


Age: 72.

Lives: Washington, DC

Family: Married.

Education: PS 219 Elementary / Middle School, New York; Sheepshead Bay High School, New York; Long Island University: BA in Speech Pathology and Theater with an emphasis on Speech Pathology; Berkeley, University of California, MSc Public Health.

Career: 2017-present: President Judith Heumann LLC; 2017-2018: Senior Fellow, Ford Foundation 2010-17: Special Adviser, International Disability Rights at the US State Department (Obama Administration); 2007-2010: Director, Disability Services Department, District of Columbia; 2002-06: Advisor, Disability and Development, World Bank; 1993-2001: Assistant Secretary (Clinton Administration), Bureau of Special Education and Rehabilitation Services, US Department of Education; 1983-93: Co-founder and co-director of the World Institute on Disability; 1976-82: Deputy Director of the Center for Independent Living; 1974-75: Assistant Legislative, US Senate Committee on Labor and Welfare; 1970-73: Founder and President, Disabled in Action.

Awards and honors: Honorary doctorates from six universities in the USA. Awards for disability activism and civil rights work include: Lurie Institute for Disability Policy; Henry B. Betts Award; National Council for Independent Living (Women’s Caucus Award, Max Starkloff Lifetime Achievement Award); Society for Disability Studies (President’s Award) International Council on Disability of the United States (Dole-Harkin Award).

Interests: Theater, musicals, ballet, literature for the disabled and the media.

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