When I first covered a story on disability rights in 1987, Judy Heumann was the first person I phoned. Judy, who was diagnosed with polio at 18 months, offered me the quotation summarising that underappreciated civil rights fight. “Disability only becomes a tragedy when society fails to give the things we need to conduct our lives, for example, employment chances or barrier-free structures,” she remarked. “The fact that I use a wheelchair to get around is not a tragedy.”
My editors at a news magazine opted not to publish my piece since the concept struck them as so surprising and weird. That persons with disabilities did not view themselves, or their situations as something to be pitied was yet a radical claim. Or they might have claimed that social exclusion, such as beliefs that they could hold down a job, attend college, or find love, or physical obstacles like a sidewalk without a curb cut, was what most hindered them, rather than their physical health.
Thanks to individuals like Heumann, who passed away unexpectedly on Saturday at the age of 75 in a hospital in Washington, D.C., that reimagining of what it means to be disabled did gain traction over the years; the passage of the Americans with Disabilities Act just three years later in 1990 was a milestone. She had been admitted to the hospital over the weekend due to breathing issues.
Heumann, a significant figure in the American civil rights movement, was poorly recognized until the final three years of her life when she suddenly became well-known. Becoming Heumann: An Unrepentant Memoir of a Disability Rights Activist, her autobiography co-written with Kristen Joiner and published in February 2020, just before the epidemic, was the catalyst.
As the documentary Crip Camp: A Disability Revolution was released, Heumann’s legacy began to be recognized. Filmmakers James LeBrecht and Nicole Newnham unearthed a lost film of a summer camp for kids with disabilities in upstate New York and cleverly used it to investigate identity concerns.
The young people who use wheelchairs and have other impairments yearn to be accepted by a society that has shunned them, but they also find pride and camaraderie in a space that is just for them. Heumann, an intelligent and self-assured organizer who had attended Camp Jened since she was eight and was a counselor at the time of the original film footage, swiftly emerges as the documentary’s star.
In July 2020, when the ADA celebrated its 30th anniversary, many journalists called Judy. Imani Barbarin, a young activist born just four months before the ADA became law, and Judy exchanged advice for NPR. Judy, actively promoting disability civil rights until her death, emphasized the significance of the new approaches taken by young activists like Barbarin, who do not view the ADA as the pinnacle of ownership but rather as a starting point for achieving equality.
The murder of George Floyd sparked a conversation about diversity, equity, and inclusion, with disabled people insisting it had to include them, and the pandemic itself, one of the biggest causes of new disability since the spread of polio, helped advance awareness of Heumann’s work and the rise of the disability civil rights movement.
Heumann’s wheelchair was initially referred to as a fire hazard.
Judy, a butcher’s wife, and daughter from New York developed polio in 1949. Her parents, German Jewish immigrants, attempted to enroll her in kindergarten when she was five but were turned away by the neighborhood public school. The principal said allowing a girl in a wheelchair access to the school would pose a fire risk.
Judy was forced to receive her education at home for a few sporadic hours each week until her mother, Ilse Heumann, pushed to have her daughter admitted to a school. Years later, Heumann earned her degree from the college where she had pursued her career as a teacher. She was informed that one of the few careers available to a young woman in a wheelchair was speech therapy.
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But once more, she was considered a fire risk. This time, in 1970, the Board of Education of New York City decided that a teacher using a wheelchair would not be able to evacuate students in case of an emergency and revoked her teaching credential. Heumann filed a lawsuit after taking note of her mother’s support. The neighborhood press backed her up. A newspaper article about Franklin Roosevelt’s presidency stated that someone with polio might be president rather than a teacher.
We’re not going to let a hypocritical society give us a nominal education and bury us, Heumann told the reporter for that story. Following press coverage, other disabled people across the nation wrote her letters describing their experiences with discrimination. Disabled in Action, a protest organization Heumann co-founded, was inspired by the efforts of Black civil rights activists, the women’s movement, and anti-Vietnam War protestors.
Throughout the 1970s, Heumann’s advocacy increased.
In 1972, Heumann and a few DIA protesters blocked Madison Avenue traffic during rush hour in front of President Richard Nixon’s reelection campaign offices. They wished to draw attention to Nixon’s veto of the 1972 Rehabilitation Act, which increased services for those with disabilities.
Heumann relocated to Berkeley, California, home to a fledgling but rapidly expanding disability civil rights organization. (In 1990, I began writing a book titled No Pity: People With Disabilities Building a New Civil Rights Movement. I went on my first reporting trip to Berkeley to spend time learning from activists like Judy, Ed Roberts, and others.)
The Rehabilitation Act of 1973, which contained ground-breaking language to combat discrimination against people with disabilities, was signed by Nixon in 1973. Yet, neither the Nixon nor the Ford administrations wrote the regulations needed to make that anti-discrimination language effective. Disabled people occupied a federal building in San Francisco as Jimmy Carter’s new administration appeared unclear on how to proceed.
One of the first acts of the burgeoning disability civil rights movement to garner national public notice was the demonstration, which lasted for 26 days in the spring of 1977. Heumann—who was 29 at the time—became a leader. Heumann did not give the federal official a pass when the California congressman held a hearing at the building under occupation and attempted to appease the demonstrators.
“We won’t stand by while the government abuses people with disabilities. The rule of law must be upheld. No more mention of segregation will be tolerated, “She declared in a voice that trembled from emotion and outrage. And if you could perhaps quit nodding your head in agreement when I believe you are confused by what we are discussing.
The demonstrations compelled the Carter administration to put Section 504 of the Rehabilitation Act into effect, which stated that no federally funded entity, not even a for-profit corporation, could discriminate against a person based on their disability.
The ADA, which would apply the principles of non-discrimination to all public accommodations, employment, transit, communications, and access to state and local government programs, was modeled after Section 504, which became a model for it. Heumann described her joy at being present on the White House lawn on July 26, 1990, when President George H.W.
Bush signed the Americans with Disabilities Act into law in her memoirs, even though she had criticized the Act for not going far enough to assist those like her who required help from aides to live at home. Heumann oversaw several disability organizations in California. At a symposium for people with disabilities in 1991, she met Jorge Pineda; they were married the following year.
Heumann shifted her focus to working for the government and advancing disability rights worldwide.
President Bill Clinton appointed Heumann as assistant secretary of education in 1993, in control of all federal education programs for students with disabilities in the country. Heumann had previously been deemed a fire hazard and too unsafe to be a student or teacher. Later on in the Obama administration, she served as Secretary of State Hillary Clinton’s special assistant, in charge of promoting global civil rights causes.
Heumann had contributed to the American civil rights revolution for disabled people, which was now spreading abroad. One hundred eighty-one nations approved disability civil rights laws modeled after the ADA between 2000 and 2015. (although many were laws with little power or follow-up). Heumann toured over 30 nations in her massive motorized wheelchair, preaching the gospel of equal rights for people with disabilities.
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I accompanied Judy to a State Department seminar in Washington for the ADA’s 25th anniversary in 2015, which featured 50 disability advocates from 33 different nations. Judy was treated like a rock celebrity. They brought her gifts and posed for photographs. They sought her counsel when it came to breaking down abusive orphanages for challenged children and securing equal rights for women with impairments. Judy told them, “We are gently transforming the world.
Heumann was upbeat, quick to grin, and full of hope for the future. She wasn’t afraid to point out bigotry, though. Heumann appreciated the increased demand for her time since 2020 and the growing acclaim for her work. She continued to mentor young activists worldwide and was very giving with her time. To meet the rising demand for her speaking engagements, she created a podcast, went on the road, or during the epidemic, appeared on Zoom.
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