PrAACtical Heroes: Judith Heumann

March 6, 2023 by Carole Zangari - Leave your thoughts

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Judith Heumann (1947-2023)

It is hard to overstate the loss that the disability community feels with the recent death of Judith Heumann. Pioneer, activist, author, change agent. Judy worked tirelessly for so many laws, policies, and programs that we now take for granted.

Everyone has a Judy Heumann story. Mine goes back to 1981 when I was a young support worker caring for Marcia, one of the first people with significant physical limitations near me to live in her own apartment. I would visit Marcia each morning to help her get out of bed and ready for the day, do some laundry and cooking, and head out to my college classes. I’d return in the evening to tidy up and help Marcia through her evening routine. Once she was settled into bed, I checked to be sure the stove was off about a million times, turned off the lights, and said goodnight. Each time when I locked the apartment door behind me and headed to the bus stop, my heart raced, and I swallowed down feelings of terror.

It took weeks before I stopped turning around and heading back just to check ‘one more time’ before I headed home. Marcia couldn’t move independently. She couldn’t roll over in bed to get more comfortable, let alone pick up a phone and dial it if she needed a drink, had to use the bathroom, heard an intruder, or smelled smoke.

It took unspeakable bravery for people like Marcia to live under those conditions. Within a few months, Marcia told me that she wanted to move by herself across the country to California, where people with disabilities were banding together to insist on more inclusive access to daily life experiences.

At that time, Judy was involved in setting up one of the first Centers for Independent Living (CIL) in Berkeley. Marcia budgeted money for the long-distance calls we made to learn about the organization so she could eventually move there. Judy’s toughness and Brooklyn accent eased the process. When Marcia and I said our last goodbyes, I couldn’t help but be awestruck by them both.

Judy’s subsequent work as an activist, thought leader, and change agent spanned decades. Her legislative priorities, books, keynotes, podcasts, and writings are a small part of her legacy. It was an honor to reconnect with her in a small way through Camp Wings of Friendship, a collaboration between The Friendship Journey and Dylan’s Wings of Change, at the start of the pandemic. Many thanks to AAC friend Richard Ellensen for making that possible.

The honorary title of ‘Mother of the Disability Rights Movement’ only hints at the impact that Judith Heumann made on our society. Her list of accomplishments is both a mile long and incredibly deep. In the end, what struck me most was not the enormity of her contributions but her unending ability to connect with people on an individual level. Humanity unites us all. The gift that is Heumannity is history, legacy, and call to action.

Today we look back with respect, gratitude, and a renewed sense of commitment.