Reflecting on the Life of a Disability Rights Trailblazer
April 03, 2023
By: Ben VanHook
Categories: Community News, Self-Advocates
Judith Heumann, the “mother of the disability rights movement,” and an influential figure throughout the disability community, passed away on March 4, 2023. Renowned on a global scale as a fierce activist and advocate for the disabled community, she will be remembered for breaking barriers in both her personal and professional life.
Her biography on the National Women’s History Museum website lays out her early childhood in detail. At just two years old, she was afflicted with polio, which, at the time had no vaccine, and lost her ability to walk. Three years later, Heumann was denied her right to education. As quoted in Deadline, “The school principal said I was a fire hazard; I couldn’t go to the school… He told my family, ‘Don’t worry, the Board of Education will send a teacher to your house.’ Well, they did. Not in kindergarten, but for the first, second, third, and half of the fourth grade, for a total of two and a half hours a week. So that was a very clear message that their expectations for me were not the expectations my parents had for me.”
Some of Heumann’s earliest experience, both positive and negative, provided a foundation for her advocacy work, most notably, her time at Camp Jened, a summer camp for disabled individuals. Quoted in her biography on the National Women’s History Museum website, Heumann, said “we were dating like you would if you didn’t have a disability, we were swimming, and playing baseball and arts and crafts, but we were also having time to gather our own voices…It was a liberating time; we could be ourselves and it absolutely helped formulate our futures.” Her positive experiences at Camp Jened and interactions with the staff, as both a camper and staffer, fueled her passion for advocacy for the disabled community.
Heumann began to gain recognition in the mid-to-late 1970s. It was during this time that she became the first teacher in the state of New York to work while using a wheelchair, after winning a lawsuit against the New York Board of Education. She was initially denied her teaching license after, once again, being deemed a fire hazard, with the Board fearing she would be unable to evacuate herself or her students if a fire arose.
In 1977, Heumann staged a well-documented 28-day sit-in at the San Francisco Federal Building to demand the implementation of Section 504 of the Rehabilitation Act. According to Forbes, this was the longest occupation of a federal building in United States history. She was vying for the inclusion of Section 504 which states, “no otherwise qualified handicapped individual in the United States shall solely on the basis of his handicap, be excluded from the participation, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance.”
Heumann’s advocacy did not stop there. In 1983, according to The Judy Heumann Project, Heumann co-founded the World Institute on Disability, one of the first global disability rights organizations founded and continually led by people with disabilities that works to fully integrate people with disabilities into the communities around them.
Heumann also entered the policy arena, having helped develop Section 504 of the 1973 Rehabilitation Act, the Individuals with Disabilities in Education Act (IDEA), and the Americans with Disabilities Act (ADA). From 1993 to 2001, Heumann served as the assistant secretary for the Office of Special Education and Rehabilitative Services in the Department of Education during the Clinton administration. As noted in an article on the NEA website, President Obama appointed her as the first special advisor for international disability rights at the U.S. Department of State, where she served from 2010-2017.
Judith Heumann will be remembered as a fierce advocate for the rights of disabled individuals on the social and political fronts. Without her advocacy, dedication, commitment, and sacrifice, disabled individuals would not enjoy the liberties they do today. The ADA and IDEA in their current forms, may never have been signed into law.
President Joe Biden went so far as to say, “Her (Heumann’s) courage and fierce advocacy resulted in the Rehabilitation Act, Individuals with Disabilities Education Act, and the Americans with Disabilities Act.”
Similarly, Ned Price, the spokesperson for the U.S. Department of State, said, “legislation — such as the Americans with Disabilities Act, Section 504 of the Rehabilitation Act of 1973, the Individuals with Disabilities Education Act — and the UN Convention on the Rights of Persons with Disabilities would not exist without Judy’s leadership alongside her pioneering fellow advocates.”
Judy Heumann’s advocacy left a huge impact on the disabled community, both in terms legislation and in changing the narrative around disability. In part, because of her work, more individuals have felt comfortable disclosing, asking for accommodations, and seeing disability as something, not to be ashamed of, but rather, be proud of. She has been, and will continue to be, a trailblazer and inspiration, and her legacy continues to inspire many self-advocates and allies.
Ben VanHook is an expert on the autistic employee and student experience. He has spoken at colleges across the United States from Stanford to Chestnut Hill and has been featured in programs from PBS to the New York Times. He has spoken to international audiences at the United Nations and in Melbourne, Australia. He has authored articles for the American Psychological Association and advised groups from the open mainframe project to Partners in Promise.
Ben is currently a master’s student studying public policy at George Mason University, with the hopes of reforming employment and education policy to make both domains more inclusive, equitable, and accessible for neurodivergent individuals.