A woman with glasses in a wheelchair speaks to a younger woman in a wheelchair wearing a pink shirt, shorts and sneakers

In Celebration Of Judith (Judy) Ellen Heumann (December 18, 1947 – March 4, 2023)

By Athena Savides, Peer Mentor

On the morning of March 8, 2023, there was a Celebration of Life for Judy Heumann in Washington D.C. Hundreds of people were in attendance, while many thousands watched online. Consumer Directed Personal Assistance Association of New York State (CDPAANYS) would like to join in the celebration of her life and fervent disability activism. 

Judy Heumann had Polio at 18 months old, and lived in an iron lung for 3 months. Afterwards, she had post-Polio (poliomyelitis) for the rest of her life, and used a wheelchair. Without Judy Heumann, and many other activists like her, it is quite possible that CDPAANYS would not exist today. She once said, “Independent Living is not doing things by yourself; it is being in control of how things are done.” This succinctly states one of the goals which we share with CDPAANYS’ Consumers every day, of learning how to control one’s own life and have agency in it. This was vitally important to Judy, as far back as the story she tells of being a young child in Brooklyn, New York, and having to yell for her neighbor to come outside and play because the houses were not wheelchair accessible. At first she used a manual chair, which someone had to push because there were no other types of wheelchairs available, and eventually she used an electric, or “power”, wheelchair. Judy was homeschooled until the middle of the third grade for very few hours a week because the principal of her school said that she was a “fire hazard” due to her use of a wheelchair.

Her legacy as a disability rights pioneer originated during her adolescence at the now-defunct summer camp, Camp Jened, located in the Catskill Mountains in upstate New York, where she made sure that everyone, even the nonverbal and non-speaking campers, was able to have their thoughts heard in group discussions. She has explained during interviews in recent years how the collective experiences at that camp led to her and her fellow campers’ believing that they could make change in the world and start removing barriers that exist in society. What began at Camp Jened morphed into what is well-known today, nationally and globally, as the Disability Rights movement. 

Judy Heumann also said, “One of the reasons why I think personal assistance is so important for younger people is it also helps younger people begin to make decisions.” In my experience as a young adult with a disability, this is still true. My personal assistants work for me and with me, so a large part of their job is to support me in making the decisions or doing the activities that I want to. This is helpful and sometimes freeing because it allows me not to have to ask for permission, support, or help from family and friends. I feel that Judy Heumann meant that the more a person can direct their own care, the more the decisions can become autonomous, even though the actions may require assistance. 

The Disability Rights movement and the Independent Living movement were and are inextricably linked. Judy Heumann is known as the mother of The Disability Rights movement. After Camp Jened ended, many of the campers, including Judy Heumann, moved to Berkeley, California, where Edward “Ed” Verne Roberts (the father of the Independent Living movement) created the city’s first Independent Living Center. The Independent Living movement was founded in Berkeley, California in opposition to the societal bias towards institutionalizing people with disabilities. Berkeley, California, was therefore the birthplace and epicenter of the Independent Living movement in the United States. 

Judy Heumann has called herself “an extrovert with a capital E”, and made it a point to instill her feisty sense of purpose in everyone she met. Her first task as an adult was becoming a teacher in the New York City public school system after the doctor failed Judy in the physical portion of her prerequisite exam. She sued the Board of Education, and became the first wheelchair using teacher in New York City. She went on to serve as the Assistant Secretary for the Office of Special Education and Rehabilitative Services in the Department of Education under the Clinton Administration. She later served, by the appointment of former President Barack Obama, as the first Special Advisor for International Disability Rights at the U.S. Department of State from 2010-2017. Additionally, she was an accomplished author of her own memoir, as well as other disability rights related books. She worked as a speech therapist, and still maintained a keen interest in the use of augmentative communication devices in her podcast, The Heumann Perspective, over the last few years. 

What friend and director James “Jim” Lebrecht called one of the greatest moments in disability rights history is on full display in his documentary, “Crip Camp: A Disability Revolution”, which takes viewers on the journey through the formative years of Camp Jened and the activism that followed. Judy Heumann led an occupation in the office of Secretary Joseph “Joe” Califano at the federal building in San Francisco to improve Section 504 of the Rehabilitation Act of 1973, which is education legislation for people with disabilities. After this occupation, or sit-in, which lasted one week, the bill was signed into law by President Nixon. It was the longest non-violent occupation of a federal building in the history of the United States.

I had the honor of meeting Judy Heumann once in person at the first Disabled and Proud Conference at Syracuse University in August of 2011. The entire experience of the conference is just a blur because everyone, including myself, was so excited. According to the photos, Judy and I sat opposite each other in our power wheelchairs and talked while other people stood around us, waiting for their moment to speak with her. I have been trying since her death on March 4th to remember the words she said to me, but unfortunately it has just been too long. I have an inkling that she was pushing me to get involved in advocacy, and that seems highly likely given her penchant for connecting people to each other in order to make change and instill independence. Even though I can’t remember the conversation, I am so grateful for it, and for the opportunity to have met her because she was nothing short of a celebrity in the Disability Community. 

Judy Heumann has stated that there is so much work left that we can all do, reminding us that Disability Rights activism started as, and will always be, a group-centered movement. CDPAANYS will remember Judy Heumann as one of the sparks that ignited the Disability Rights movement: a journey on which people with disabilities, their advocates, and allies continue today, understanding with gratitude the gravity of our position as a new generation of Disability Rights activists.

Share This: