Judy Heumann’s legacy must not be forgotten

Paying tribute to a true hero and pioneer of disability rights

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by Kevin Schaefer |

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“A hero — not the hero we deserved, but the hero we needed.”

This line from a Batman movie aptly describes the life and legacy of Judy Heumann. The prominent disability rights activist, who died March 4 at the age of 75, remains a hero in every sense of the word.

Heumann believed that disabled people should have the same rights as everyone else, a simple philosophy that was also counterintuitive to the world she grew up in. As depicted in the Netflix documentary “Crip Camp,” disabled individuals were tossed aside, institutionalized, and denied opportunities for education and employment.

Her refusal to accept the status quo ignited a revolution that resulted in the passing of Section 504 of the Rehabilitation Act of 1973 and, eventually, the Americans with Disabilities Act (ADA) of 1990. She deserves a place in history books and should be taught in schools across the United States. My own life and the lives of my friends wouldn’t be the same without her.

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In 2021, I had the honor of interviewing Heumann for the SMA News Today podcast. Even though she didn’t have SMA (she contracted polio when she was 18 months old), her work impacted every disability community. When she responded to my email asking her to come on the podcast, a wave of nerves hit me. She was my most high-profile guest and was at the time promoting both the “Crip Camp” film and her memoir, “Being Heumann.”

Throughout our Zoom conversation, it felt as though I was talking with a friend on a human level. She had served in two presidential administrations and spent much of the time shining a spotlight on other disabled individuals. She also asked me a number of questions and displayed an interest in my story. Her activism stemmed from a sense of community that she experienced early in her life.

Between the podcast and the entirety of my journalism career, I’ve interviewed writers, artists, entrepreneurs, and public speakers. However, my conversation with Heumann was nothing short of talking with a superhero.

And yet, so many people don’t know who Heumann was or how her story changed the world. When she died, I heard the news from friends in the SMA and disability communities, not from mainstream media outlets. Her obituary in The New York Times didn’t appear until the day after her death, even though it was publicly announced the afternoon of the 4th. It struck me that B-list celebrities receive more attention than her.

This reminds me of a quote in “Crip Camp” from author and disability educator Denise Jacobson. She says toward the end of the film, “The ADA was a wonderful achievement. But it was only a tiny tip of the iceberg. You can pass a law, but until you change society’s attitudes, that law won’t mean much.”

We still have a long way to go in making disability history a core part of our educational system. I simply can’t accept the idea of Heumann’s legacy fading into the background. She deserves more.

The fight for a more inclusive world goes on, but we wouldn’t be where we are without the work of a Brooklyn-born activist who saw the humanity in each of us. Thank you, Judy.


Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

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