by Sophie Trist
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For most of human history, people with physical and mental disabilities have been killed, institutionalized, stigmatized, incarcerated, and otherwise dehumanized. While there is still much work to do to achieve equal rights and human dignity for people with disabilities, we have made great strides over the past five decades. A primary driver for this change was teacher, writer, diplomat, and disability justice activist Judith "Judy" Heumann. Judy passed away on March 4, 2023, so now is the time to reflect on her legacy and the work that still remains.
Dehumanization was part of Judy's story even before she was born. Her parents were both Holocaust survivors who escaped Nazi Germany as teenagers and ended up in New York City. After a bout of polio left Judy with quadriplegia, her parents ignored medical advice to institutionalize and abandon their disabled daughter. In the 1950s, no laws existed guaranteeing students with disabilities the right to a free public education, so Judy was nine years old before her mother managed to get her into a segregated program.
As a teen, Judy spent summers at Camp Jened, a groundbreaking camp where kids with disabilities formed friendships, played, and learned from disabled role models. In her memoir Being Heumann, Judy wrote, "At camp, we tasted freedom for the first time in our lives.” The disability culture formed at Camp Jened, and the activism it inspired, is the subject of the award-winning Netflix documentary Crip Camp.
Judy was initially denied a teaching license solely because of her disability. The ACLU refused to take up her case, but Judy successfully sued the New York City Board of Education.
In the 1970s, Judy moved to the University of California Berkeley and joined the Independent Living Movement, which called for integrating disabled people into their communities and promoting their autonomy. In 1973, Congress passed the Rehabilitation Act, the first federal civil rights protection for people with disabilities. Section 504 of that law read, "No otherwise qualified handicapped individual in the United States shall solely on the basis of his handicap be excluded from participation, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance.” But four years after the law was signed, the Department of Health, Education, and Welfare had yet to release enforcement regulations. By April 5, 1977, fed-up activists nonviolently occupied the HEW building in San Francisco. The sit-in, of which Judy was a prominent organizer, lasted twenty-six days, making it one of the longest nonviolent protests in American history. The disabled activists received support from politicians, churches, labor unions, racial justice activists, and gay rights groups. Judy writes in her memoir, "When I look back now, I see that one of the greatest aspects of the 504 sit-in was the way it united us. We weren’t focused on how we were different — we were focused on our common goal, our collective purpose. We looked beyond how we each spoke and moved, how we thought and how we looked. We respected the humanity in each other. We stood for inclusiveness and community, for our love of equity and justice — and we won.”
Judy's commitment to rehumanizing people with disabilities persisted through a long and storied career. She co-founded the World Institute on Disability, served as an advisor on disability affairs at the World Bank, and worked in the Clinton and Obama administrations, first leading the Office of Special Education and Rehabilitation Services, then for the State Department, putting disability rights on the global agenda. She worked with politicians and other disabled activists to get the Americans with Disabilities Act passed in 1990. She participated in the iconic Capitol Crawl on March 12 of that year. During this unforgettable protest, people with disabilities, including a nine-year-old girl, abandoned their mobility aids and crawled up the steps of the U.S. Capitol to demonstrate the dehumanization and violence inherent in inaccessible spaces.
As I write this, increasing acceptance of physician-assisted suicide and euthanasia systematically devalues disabled lives. Eugenic abortion practices and the prospect of editing disability out of the gene pool threaten to erase us. Americans with disabilities still can't marry without risking their benefits, and discrimination in education, housing, and employment remains endemic. Disabled people and our allies fighting these and myriad other injustices owe much to Judy Heumann and leaders like her who refused to accept that our bodies and minds are the problem. They gave us concepts like the social model of disability, allowing us to reclaim our narratives and unapologetically assert our full and equal humanity. As whole-life activists, we constantly push back against exclusionary definitions of humanity and work toward human rights for every single human being, born and unborn. This work requires the resourcefulness, interdependence, coalition-building, and leadership disabled people have demonstrated throughout our decades-long fight for civil rights.