Judith Ellen Heumann died on March 4, 2023. Maybe it is coincidental, but I tend to think it is supremely befitting that she died at the start of Women’s History Month. Hers is a story that should be told far and wide.
Judith Heumann was a lifelong civil rights activist for people with disabilities. She is remembered internationally as the “Mother of the Disability Rights Movement.” Her tireless leadership established and transformed laws and policies that aim to protect the civil rights of people with disabilities, including those with mental health conditions, in the US and around the world.
1. Judith Ellen Heumann’s beginnings. Born on December 18, 1947, Judith Heumann grew up in Brooklyn, New York to parents who were sent away from Nazi Germany as Jewish children. Judy was diagnosed with polio in 1949 at the age of 18 months during the polio epidemic in the US. She became a quadriplegic and lived the rest of her life in a wheelchair. As a child, she faced pervasive prejudice and discrimination, as was the norm of the time. She was not allowed to attend kindergarten because the principal asserted that she would be a “fire hazard.” Thanks to her mother’s persistent advocacy, she gained access to public education when she was 9 years old. She went on to graduate from high school and earn her bachelor’s degree in speech and theater in 1969 and a master’s in public health in 1975.
2. Becoming an Activist. Heumann gained recognition as an advocate for the disabled in 1970 when she pursued a teaching position in New York City. She passed all requirements – except for the physical fitness test. She was told that she was not able to teach because regulations required teachers to have the capacity to navigate stairs in the event of an emergency. She sued the city, and got the local press to run an article entitled, “You Can Be President, Not Teacher, with Polio.” Ultimately, she secured her teaching position, but she had more work to do. Over the course of her career, Heumann worked with governments and non-governmental organizations (NGOs), non-profits, and various other disability interest groups around the world to advance legislation and policies that protected the rights of anyone living with disabilities. She was the World Bank Group’s first Advisor on Disability and Development, an official in the Clinton Administration, and Special Advisor on International Disability Rights for the US State Department during the Obama administration.
3. The Crux of the Matter. Heumann rejected the familiar tropes about disability as a tragic experience. Journalist Joseph Shapiro contacted Heumann in 1987 as he researched his first disability rights story. When asked about being a wheelchair user, Heumann told Shapiro, “Disability only becomes a tragedy for me when society fails to provide the things we need to lead our lives––job opportunities or barrier-free buildings, for example. It is not a tragedy to me that I’m living in a wheelchair.” Shapiro says that idea was so radical and unfathomable at the time that his editors decided not to publish the article. But that idea only gained momentum, and by 1990, The Americans with Disabilities Act was passed in the US. More than fifteen years later, the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) was adopted on December 13, 2006 to “promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all disabled persons.” The crux of the matter is that human rights are human rights, they are not rights that pertain to some but not others.
4. Crip Camp. Judith Heumann’s role in advancing rights for people with disabilities garnered greater public attention with the release of the documentary film, Crip Camp: A Disability Revolution. Camp Jened was founded in the 1920s and re-opened as a camp for young people with disabilities in 1953. It was an oasis for children like Heumann. Camp Jened was committed to providing a summer camp experience that was filled with fun, music, and the things that kids loved to do. Heumann is “the activist star” of the film. In a 2020 NY Times Q&A Heumann said of Camp Jened, “It was a liberating time. We could be ourselves and it absolutely helped formulate our futures.” Several of Heumann’s fellow campers went on to join her in growing the grassroots disability advocacy movement. For inspiration, and for the potential to break through prejudicial stereotypes that you may not even know you hold, I highly recommend this academy award nominated film.
5. What’s at Stake. The Americans with Disabilities Act (ADA) was not passed until 1990. The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) was only adopted in 2006. These are recent and historic milestones that protect people with disabilities from discrimination and define the meaning of reasonable accommodation in order to protect employees and employers. They describe a reality that should be, but one that remains an aspiration around the world. Advocacy groups rely on the ADA and UNCRPD to advance rights for a range of people with disabilities – including mobility, intellectual, and developmental disabilities, and mental health conditions. They are the bibles on which advocates depend as they fight to overcome attitudinal, environmental, and institutional barriers faced by people with disabilities in so many facets of their lives.
March is Women’s History Month. There are so many women like Judith Heumann who changed the course of history by virtue of their vision and commitment to creating a more equitable world. If it is true that a society’s greatness is measured by how it treats its most vulnerable, it should also be true that our greatest heroes should be those who have worked to make this aspiration a reality. Judith Ellen Heumann will go down in history as such a hero.