The savvy, wheelchair-using civil rights activist Judith Heumann, who led a movement to reimagine what it means to be disabled in the US, died on Saturday at a hospital in Washington DC.
Heumann had been hospitalized for a week dealing with heart issues that may have stemmed from her lifelong challenge with polio, the Associated Press reported. She was 75.
People across the country, from past and present politicians and presidential figures to civil rights activists, mourned Heumann’s sudden death over the weekend. Joe Biden described her as a “trailblazer” and a “rolling warrior” whose “fierce advocacy” led to landmark civil rights legislation – the president singled out the Americans with Disabilities Act, which protects people with disabilities from discrimination.
Heumann, who founded the Independent Living Movement, was perhaps most recognized in recent years from her appearance in the documentary Crip Camp: A Disability Revolution, which chronicled the forgotten history of a freewheeling summer camp called Camp Jened in upstate New York for teenagers with disabilities in the 1970s.
Heumann, who was born in Philadelphia in 1947 and raised in New York, contracted polio in 1949. When her mother tried to enroll her in kindergarten at a local public school, Heumann was denied entry because she was unable to walk. The principal at the time told Heumann’s mother, Ilse Heumann, that letting her attend school in a wheelchair would create a “fire hazard”. She was instead given home instruction twice a week.
After Ilse challenged those restrictions, Judy was eventually allowed to enter the building.
She attended Camp Jened at the age of eight and eventually became a counselor there. She continued to face the stigma and exclusionary practices surrounding her disability. As an adult, she had been denied a teaching license in New York, despite passing her exams. After she sued the city’s board of education, she became the state’s first wheelchair-using teacher.
Her experience at Camp Jened inspired a groundswell of US political activism and sparked a movement of young activists with disabilities who fought for civil rights protections at a time when they were treated like second-class citizens.
In a 2020 film review from when Crip Camp was released, the Guardian described her as a “captivating central figure, persuasively, passionately petitioning for equity” who refused to settle in the pursuit of broader rights even as Congress passed legislation.
As an adult, Heumann – who co-founded Disabled in Action, an activist group born out of that experience at Camp Jened – notably led a sit-in that went for 28 days at a federal building to protest the US Secretary of Health, Education and Welfare’s refusal to implement regulations from a section of the 1973 Rehabilitation Act. It was the longest sit-in at a federal building in US history.
Her youngest brother Rick Heumann told the Associated Press that her lifelong activism had not been about seeking glory but was “always about how could she make things better for other people”.
On Twitter, former president Barack Obama, who was co-executive producer of Crip Camp along with former first lady Michelle Obama, said Heumann “dedicated her life to the fight for civil rights”.
The health justice activist Ady Barkan, who serves as co-executive director of Be a Hero and moves with the help of a wheelchair while fighting amyotrophic lateral sclerosis, described Heumann on Twitter as “warm and witty and full of life, as always”. Barkan added: “What a privilege it was to meet her and what a gift it is to roll in the tracks she carved. Thank you Judy. Rest in power.”
Shantha Rau Barriga, disability rights director at Human Rights Watch, said in a statement Heumann was a “true force of nature”.
“She was a giant in the human rights movement and led with such integrity,” she added. “This loss will be felt far and wide but what a legacy she leaves behind.”
“Beyond all of the policymaking and legal battles that she helped win and fight, she really helped make it possible for disability to not be a bad thing, to make it OK to be disabled in the world and not be regarded as a person who needs to be in a separate, special place,” the president and CEO of the American Association of People with Disabilities, Maria Town, told the Hollywood Reporter.
In Crip Camp, Heumann said that she wanted to see “feisty disabled people change the world”. Back in 2021, she told PBS News Hour that decades after the height of her activism, she had seen the country shift toward recognizing the need to address “race and gender, equality, and disability as issues”.
“Disability only becomes a tragedy when society fails to provide the things we need to lead our lives – job opportunities or barrier-free buildings, for example,” she once said. “It is not a tragedy to me that I’m living in a wheelchair.”
