Judith Heumann—pioneering disability rights advocate, US Assistant Secretary of Education for the Office of Special Education and Rehabilitative Services, and co-founder of the World Institute on Disability—died 4 March 2023, according to a press release from the foundation she established (JudithHeumann.com, 2023).

Judith Ellen Heumann, who was known as “Judy,” was born 18 December 1947 in New York. As an infant-toddler, she contracted polio. She never recovered the ability to walk—she had to use mobility assistance throughout the reminder of her life—but she (and her parents) never lost her interest in moving ahead.

In their book Ms. Heumann and Kristen Joyner (2020), Ms. Heumann begins her prologue with an assertion that she never wished she didn’t have a disability:

I’m fairly certain my parents didn’t either. I never asked them, but if I had, I don’t think they would have said that our lives would have been better if I hadn’t had a disability. They accepted it and moved forward. That was who they were. That was their way. They deliberately decided not to tell me what the doctor had advised when I recovered from polio and it became clear I was never going to walk again. It wasn’t until I was in my thirties that I discovered what he’d suggested.

“I recommend that you place her in an institution,” he said

It wasn’t personal. It didn’t have anything to do with our family being German immigrants. Now was it ill intentioned.

I am sure he sincerely believed that the very best thing for these young parents to do would be to have their two-year-old child raised in an institution.

In many ways, institutionalization was the status quo in 1949. Parents weren’t necessarily even encouraged to visit their institutionalized children. Kids with disabilities were considered a hardship, economically and socially. They brought stigma to the family. People thought that when someone in your family had a disability it was because someone had done something wrong.

She didn’t let using a wheelchair define her existence. Instead she pressed ahead with her life. Even though she was denied access to school as a young child (JudyHeumann.com, no date), she (and her parents) persevered.

She went to school. And then she went on to college and, later, she obtained a masters of public health.

Ms. Heumann told Joseph Shapiro (2023), of US National Public Radio, “Disability only becomes a tragedy when society fails to provide the things we need to lead our lives — job opportunities or barrier-free buildings, for example,” she said. “It is not a tragedy to me that I'm living in a wheelchair.”

As an adolescent in the 1960s, she took an opportunity to attend Camp Jened, a summer camp with others who had disabilities. As do most adolescents attending summer camp, those students had many different social interactions. The story is captured in the wonderful “Crip Camp,” a film that was nominated for many awards. Watch this clip from the documentary.

Her career of advocacy included not just the appointment to one of the highest ranking positions in the US Department of Education, but also collaborations and international efforts to advance disability rights. Ms. Heumann was, indeed, a tremendous advocate for individuals with disabilities…a civil rights advocate who I hope will be emulated by many others.

My last note includes a reference to a song by my former neighbor, Mary Chapin Carpenter, that seems fitting: Why Walk When You Can Fly? The lyric may seem to be about something else, but it can also be taken as promoting Judy Heumann’s approach to life.

Sources

Heumann, J. (with Joyner, K.). (2020). Being Heumann: An unrepentant memoir of a disability rights activist. Beacon Press.

JudyHeumann.com. (2023). Judith “Judy” Heumann— widely regarded as “the mother” of the disability rights movement—passed away in Washington, D.C. on March 4, 2023. https://judithheumann.com/the-world-mourns-the-passing-of-judy-heumann-disability-rights-activist/

JudyHeumann.com (no date). Meet Judy Heumann. https://judithheumann.com/project/about/

Shapiro, J. (2023). Activist Judy Heumann led a reimagining of what it means to be disabled. National Public Radio. https://www.npr.org/2023/03/04/1161169017/disability-activist-judy-heumann-dead-75

Taylor, R. (2021). She’s considered the mother of disability rights — and she’s a ‘badass.’ Washington Post, (2021-0521). https://www.washingtonpost.com/lifestyle/magazine/judy-heuman-crip-camp-film-rights-pioneer/2021/05/21/d3ab3fa6-b278-11eb-a980-a60af976ed44_story.html

Other links

Wikipedia entry: https://en.wikipedia.org/wiki/Judith_Heuman/

Updates

I’m adding links to other coverage of Ms. Heumann’s passing. This round of updates was added late on 6 March 2023.

• From US President, Joseph Biden: https://www.whitehouse.gov/briefing-room/statements-releases/2023/03/05/statement-from-president-joe-biden-on-the-passing-of-judith-heumann/

• Joseph Shapiro of US National Public Radio: Activist Judy Heumann led a reimagining of what it means to be disabled

• Edwin Rios in The Guardian: https://www.theguardian.com/us-news/2023/mar/06/judith-heumann-dead-disability-rights-activist

• Please add more in the comments….