The leading US disability rights advocate Judy Heumann, who has died aged 75, fought for her own and others’ emancipation, and blazed a trail for fellow campaigners around the world.
Espousing both direct action and working with and inside government, she played a decisive role in securing legislation outlawing discrimination against disabled people across the US and helping shape international protocols. She served the Clinton and Obama administrations and became the first adviser on disability and development at the World Bank.
The British crossbench peer and disability rights campaigner Jane Campbell described Heumann as “[the] greatest woman disability rights activist/leader who inspired me to become what I am today. She gave everything to our worldwide civil rights movement.”
Heumann’s own disability was caused by childhood polio, which left her unable to walk. The local nursery school refused to admit her on the grounds that she and her wheelchair would be a fire hazard. Her parents fought to ensure she was educated and did not miss out on mainstream activities, and a formative experience was attending Camp Jened, a pioneering summer camp for disabled children and young people in Hunter, New York, later made famous by a 2020 documentary film, Crip Camp, in which she featured.
She first came to prominence in 1970, when she sued the New York City board of education for denying her a teaching licence because of her “paralysis of both lower extremities”, which, the board said, might prevent her escorting students out of school in case of an emergency. She won her case, stating that if the school did not have a ramp or a lift, she could teach on the ground floor, and in any case she could move faster than a pedestrian in an electric wheelchair. She won the suit, and became the city’s first teacher in a wheelchair.
Two years later she was one of a group of disabled people who blocked traffic in Manhattan in protest at President Richard Nixon’s initial veto of anti-discrimination legislation. And, in 1977, she helped lead a 26-day occupation of a federal government building in San Francisco – the celebrated “504 Sit-in” – as part of nationwide action that forced the Carter administration to sign the section 504 regulations that finally enacted the same legislation, ultimately providing the basis of the widely respected 1990 Americans With Disabilities Act.
Those 1970s protests are seen now as a watershed, the first in which disabled people with impairments of all kinds joined forces. When the authorities cut power, water and landline phones to try to end the San Francisco standoff, deaf people among the occupiers maintained contact with supporters outside by using sign language.
In 1975 Heumann was on the west coast, after gaining a master’s in public health at the University of California, Berkeley. There, she co-founded with other disabled students the celebrated Berkeley Center for Independent Living, which she served as deputy director until 1982. The centre occupies a special place in the history of disability rights, leading as it did to the establishment of more than 400 others in the US alone and inspiring disabled visitors from other countries, including the UK, to fight for supported independent living as a proven alternative to residential homes.
John Evans, who was in one of the first groups of disabled people in the UK to leave residential care for their own home in the early 80s, visited Berkeley to prepare for the transition. He later recalled: “Everything I dreamed of, everything I thought of, was going on in front of my eyes.”
In 1983, Heumann co-founded the World Institute on Disability in Berkeley, serving as co-director until 1993, when she moved to Washington DC to work for President Bill Clinton on special education and rehabilitation services for disabled people.
She left government with Clinton, going to the World Bank (2002-06), but returned in 2010 under Barack Obama as special adviser on international disability rights and director of the department of disability services.
It was to her profound and lasting disappointment that, owing largely to Republican resistance to external influence on domestic policy, Obama failed to win sufficient backing in Congress to ratify the 2008 UN convention on the rights of persons with disabilities, which she helped draft. Today, the US remains one of just a handful of UN affiliates not to have done so.
Born in Philadelphia but brought up in Brooklyn, New York, Judy had two younger brothers. Her father, Werner, who ran a butcher’s shop, and mother, Ilse, who was active in community groups, had been sent separately from Nazi Germany in the 1930s by their Jewish parents, who all later died in the Holocaust. She thought this experience was why her own parents, especially her mother, fought tenaciously to prevent her being separated from them and placed in institutional care.
She contracted polio at 18 months and spent three months in an iron lung. She had to be home educated until she was nine, when her mother eventually won her full admission to school. Yet even then she and other disabled students had to take lessons in a basement and were able to mix with the wider school community only at a weekly assembly.
She attended a special high school, then Long Island University, graduating with a BA in speech and theatre in 1969.
In her memoir, Being Heumann (2020), she reflected: “Some people say that what I did changed the world. But really, I simply refused to accept what I was told about who I could be. And I was willing to make a fuss about it.”
Heumann is survived by her husband, Jorge Pineda, an accountant and fellow wheelchair user who she met at an activist meeting and married in 1992, and her brothers, Ricky and Joseph.
• Judith Ellen Heumann, disability rights campaigner, born 18 December 1947; died 4 March 2023
