Children of refugees
Judith Ellen Heumann was born on December 18, 1947, in Philadelphia, and grew up in Brooklyn, New York, the eldest of three children. Her parents, Werner and Ilse Heumann, were German Jews who had escaped as teenagers when Hitler came to power. Werner was sent alone at fourteen to live with an uncle in Brooklyn; Ilse, an only child, was sent alone at twelve to a relative in Chicago she had never met. Both lost their parents in the Holocaust, along with many other relatives. In New York Werner became a butcher, and Ilse became a community activist.
In 1949, when Judy was eighteen months old, she contracted polio. She spent three months in an iron lung and was in and out of hospital for years, and she used a wheelchair for the rest of her life. When she was two, a doctor suggested that she be placed in an institution, which was then the usual fate of disabled children. Her parents refused. Heumann later reflected that, knowing how the Nazis had treated disabled children, her parents would never have agreed.
A fire hazard in kindergarten
When Ilse took five-year-old Judy to register for kindergarten, the principal turned her away, saying she was a fire hazard. For the next four years her schooling consisted of a teacher who came to the house for about two and a half hours a week. Her mother tried a yeshiva, which also refused her. At nine she was finally admitted to special education classes held in the basement of a public school, P.S. 219, and when the city expected her to return to home instruction for high school, her mother joined other parents to force the Board of Education to make high schools accessible. Judy entered high school in 1961.
Summers were different. From childhood until she was eighteen she went to Camp Jened, a camp for disabled young people in the Catskills, where for the first time she and her friends tasted freedom and shared their anger at how they were treated. She later returned as a counsellor. She studied speech and theatre at Long Island University, graduating in 1969, and organised protests there demanding ramps and the right of disabled students to live in the dormitories.
Suing to teach
Heumann wanted to be a teacher and passed the exams, but in 1970 the New York City Board of Education refused her a license, citing the paralysis of her legs and claiming she could not get herself or her students out in a fire. A newspaper ran the headline “You Can Be President, Not Teacher, with Polio.” She sued in federal court, where the case came before Judge Constance Baker Motley, the first Black woman federal judge. The board settled, and Heumann became the first wheelchair user to teach in New York City’s schools, teaching for three years at P.S. 219, the school where she had once been a student.
Publicity over the case brought letters from disabled people all over the country describing their own experiences of discrimination. In response, Heumann and her friends founded Disabled in Action in 1970, a group run by disabled people to win civil rights protection through political protest. In 1972, after President Nixon vetoed an early version of the Rehabilitation Act, she led about eighty activists in a sit-in that stopped traffic on Madison Avenue.
Berkeley and independent living
In 1973 Heumann moved to Berkeley, California, at the invitation of the activist Ed Roberts, to join the Center for Independent Living, the first grassroots centre of its kind in the United States. She served as its deputy director from 1975 to 1982 and earned a master’s degree in public health at the University of California, Berkeley, in 1975. The independent living movement insisted that disabled people, not doctors or institutions, should control their own lives, and the Berkeley centre became a model copied across the country and abroad.
In 1974 she also worked as a legislative assistant to the chair of the U.S. Senate committee on labour and public welfare, helping to develop the legislation that became the Individuals with Disabilities Education Act, which guarantees disabled children a free public education. Millions of American children have since been educated under it, rather than being turned away at the schoolhouse door as she had been.
The 504 sit-in
Section 504 of the Rehabilitation Act of 1973 banned discrimination against disabled people by any program receiving federal money, the first federal civil rights protection for people with disabilities. But four years later the regulations needed to enforce it had still not been signed. On April 5, 1977, disabled activists occupied federal offices in several cities. In San Francisco, more than a hundred people, led by Heumann and organised with Kitty Cone, took over the regional office of the Department of Health, Education and Welfare and refused to leave.
The occupation lasted about four weeks and is believed to be the longest sit-in at a federal building in American history. Officials ordered that no food or medication be let in, but the Black Panther Party, the Salvation Army and others brought food every day. Heumann, then twenty-nine, became the movement’s national voice, and a delegation travelled to Washington to confront the government. On April 28, 1977, HEW Secretary Joseph Califano signed the Section 504 regulations. For the first time, schools, hospitals, universities and transport systems that took federal money had to open their doors to disabled people.
From the ADA to the world
In 1983 Heumann co-founded the World Institute on Disability with Ed Roberts and Joan Leon, one of the first disability rights organisations with a global reach. Through the 1980s she attended meetings, testified at hearings and lobbied for the Americans with Disabilities Act, which extended the principles of Section 504 to employment, public accommodations, transport, communications and state and local government. President George H. W. Bush signed it on July 26, 1990. Heumann called it the strongest, most comprehensive civil rights law for disability in the world.
She then took the fight into government. From 1993 to 2001 she served in the Clinton administration as Assistant Secretary for Special Education and Rehabilitative Services at the Department of Education. From 2002 to 2006 she was the World Bank’s first Advisor on Disability and Development, working to include disabled people in the Bank’s projects and policies in poor countries and helping to develop the United Nations Convention on the Rights of Persons with Disabilities. After serving as Washington, D.C.’s first Director of the Department on Disability Services, she was appointed by President Barack Obama in 2010 as the State Department’s first Special Advisor for International Disability Rights, a post she held until 2017. She worked hard, though without success, to persuade the Senate to ratify the UN convention.
A practising Jew
Jewish identity mattered to Heumann throughout her life, and she described herself as a practising Jew. As a child she went to Hebrew school, and her father carried her up the stairs to the women’s section of their synagogue. In the 1980s she travelled to Germany with her brother and friends and visited Hoffenheim, the village where her father had grown up. People were kind, but no one said a word about what had happened to the Jews, even when they were shown the site of the burned synagogue. She refused, she wrote, to give in to the pressure of that silence.
In Berkeley, her synagogue made its bimah accessible so that she could reach it. When the rabbi invited her to be called up to the Torah, she was stunned: she had grown up in a congregation where women were never given an aliyah, and it had never happened to her before. Her family’s history, and the Nazi murder of disabled people, gave her a sharp sense of what happens when a society decides some lives matter less.
Crip Camp and a late celebrity
For most of her life Heumann was little known outside the disability community. That changed in 2020 with Crip Camp: A Disability Revolution, a documentary directed by Nicole Newnham and James LeBrecht and produced with Barack and Michelle Obama’s Higher Ground Productions. Built on old footage of Camp Jened, it showed how campers like Heumann went on to lead the 504 sit-in. It won the Audience Award at Sundance, was released on Netflix and was nominated for an Academy Award. The same year she published her memoir, Being Heumann: An Unrepentant Memoir of a Disability Rights Activist, written with Kristen Joiner, and Time named her its retrospective Woman of the Year for 1977.
She used every platform she had. In 2016 she gave a widely watched TED talk on the fight for disability rights; as a senior fellow at the Ford Foundation from 2017 to 2019 she co-wrote a report urging the film and television industries to hire and portray disabled people; and in 2021 she started a podcast, The Heumann Perspective. She married Jorge Pineda in 1992, and they lived in Washington, D.C.
Legacy
Judith Heumann died in Washington, D.C., on March 4, 2023, at the age of 75. She is often called the mother of the disability rights movement. Her central idea, that the problem lies not in disabled bodies but in the barriers society builds, now shapes laws, buildings, schools and transport across the United States and far beyond.
The ramps, lifts, accessible buses, sign language interpreters and inclusive classrooms that millions of people now take for granted owe much to the movement she helped lead. Through the World Bank, the State Department and the UN convention, now ratified by most of the world’s countries, she helped carry those rights to the more than a billion people worldwide who live with a disability. Few activists have changed the daily lives of so many people.
Sources & further reading
Judith Heumann, Wikipedia · Judith Heumann, Shalvi/Hyman Encyclopedia of Jewish Women, Jewish Women’s Archive · Activist Judy Heumann led a reimagining of what it means to be disabled, Joseph Shapiro, NPR (2023) · Section 504 sit-ins, Wikipedia · Crip Camp, Wikipedia · Researched from the sources above and checked against them. Spotted an error? Tell us.
A life of tikkun olam. This is part of tikkun olam, the Jewish idea of repairing the world, and every one of us can add to it.