This past Saturday, we lost Judy Heumann.
Judy was a true force of nature, a revolutionary, someone who changed the world…and yet her name rarely appears in history books. When she passed, there were no news alerts from any of the major media outlets. In fact, I wouldn’t be surprised if a lot of you reading this right now don’t even know who I’m talking about.
After all, even I can admit that I knew neither her name, her accomplishments, nor her legacy, until 2020.
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Judy Heumann was a disability rights activist who was recognized internationally as a leader in the disability rights community, often regarded as the “mother of the disability rights movement.” Her story began in 1949, when 18-month-old Judy contracted polio and began to use a wheelchair to get around the world. At five years old, she was denied the right to attend public school because the district deemed her a “fire hazard.” She had to advocate for herself to get an education, and did so again as an adult to become an educator when she successfully sued the New York City Board of Education for her teaching license. It was originally denied to her out of concern she would not be able to escort students out in the event of a fire.
Judy Heumann ultimately became the first wheelchair user to teach in the city. In fact, Judy was often the first disabled person in every role she would take on throughout her life.
She spent many impactful summers at Camp Jened, a camp for children with disabilities. The camp, as documented in the Obama-produced documentary Crip Camp (which I can’t recommend enough), created an environment where she and fellow future disability rights activists questioned why the world wasn’t accessible and envisioned a world that was designed for them.
These conversations encouraged the campers — Judy included — to become more politically active. In 1970, Judy co-founded Disabled In Action, an organization that focused on securing the protection of people with disabilities under civil rights laws through political protest. She proved just how effective she and the entire community could be by stopping traffic on Madison Avenue in a sit-in to protest President Nixon’s veto of what would become the Rehabilitation Act in 1972.
You read that correctly. She SHUT DOWN Madison Avenue. She did that.
Image credit: Tari Hartman Squire
While the Rehabilitation Act did become law, a few years later, the country still needed regulations that would define who was disabled, what would be considered acts of discrimination, how the law would be enforced. The government was taking its sweet time. Mind you, this legislation was one of the FIRST federal civil rights laws protecting people with disabilities, and yet, years after it was passed, it still could not be properly enforced. This meant that those with disabilities were still not protected, regardless of the laws in place. When it was leaked that the Carter administration was leaning towards changing the language, essentially gutting the regulations into something that was similar to “separate but equal,” the disability community took action.
To no one’s surprise, Judy Heumann was at the forefront. She was one of the organizers of the San Francisco 504 Sit-In which, as of this writing, is the longest occupation of a federal building in US history. This protest, along with others staged across the country, not only led to the regulations being signed without any weakening language having been added, but also demonstrated just how powerful the disabled community is. It showed that we are not, as the media loves to portray us, weak, incapable, defenseless, or dependent.
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Furthering her legacy, Judy went on to serve in the Clinton administration as the Assistant Secretary for the Office of Special Education and Rehabilitative Services in the Department of Education and the World Bank’s first Adviser on Disability and Development. In 2010, she was appointed by President Obama as the first Special Advisor for International Disability Rights at the U.S. Department of State. Afterwards, she went on to work at the Ford Foundation as a Senior Fellow, wrote a memoir entitled Being Heumann: An Unrepentant Memoir of a Disability Rights Activist, and hosted a bi-weekly podcast called The Heumann Perspective where she talked with leaders in and allies of the disability community.
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I was honored to interview Judy back in April of 2022 on my podcast, Always Looking Up to celebrate the 45th anniversary of the 504 Sit-Ins. It’s not every day that you get to talk to the person in whose footsteps you are trying to follow. The person who continually empowers you to be a better advocate, a better ally, and a better person. We discussed the current state of accessibility, how to incorporate the history of the disability civil rights movement into education and advocacy, and what it means to say “I’m disabled.”
Towards the end of the episode I asked her, as I do with every guest, who she looked up to. Her answer, “I look up to people who are bold and daring. People who take risks. People who are willing to step forward and try to do things differently…people who have risked many parts of themselves by speaking up and out not only for themselves, but for others, by encouraging other people to create a vision of where we want to move towards”.
Her story is one that should be told, celebrated, and remembered. Unfortunately, it is often overlooked. She changed the world, not just for people with disabilities, but for everyone. She refused to back down, refused to settle, and refused to accept society’s belief that being disabled meant that you were less-than. It is up to us, not just the disabled community, but all of us and future generations to carry on her legacy.
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We witnessed what happens when everyone comes together in support of a larger movement with Black Lives Matter and #MeToo. It is time to do that for the disability rights movement. It is up to all of us to be the people to whom Judy looked up. To be people who are bold, daring, and risk-takers. People who are willing to step up, do things differently, and change the world.
Jillian Curwin is a lifelong activist in the little person and disabled communities. She is the founder and owner of Always Looking Up, a personal website and podcast that brings awareness to living life as a little person in an average-height world. Professionally, she has used her experience as a little person to contribute to agency diversity, equity, and inclusion initiatives. On her platforms, where height is just a number, not a limit, she discusses adaptive and accessible fashion, disability representation, and the impact of civil rights on the disabled community. Past guests on her podcasts include Judy Heumann, international disability rights activist, Rebecca Cokley, program officer at the Ford Foundation, Jim LeBrecht and Nicole Newnham, the co-directors and co-producers of Crip Camp, and Maria Town, President and CEO of the American Association of People with Disabilities.
