Book: Being Heumann: An Unrepentant Memoir of a Disability Rights Activist by Judith Heumann with Kristen Joiner
Genre: Memoir
Publisher: Beacon Press
Publication date: 2020
Page count: 218

Source: paperback purchased from local bookstore

Summary: “One of the nearly forty-three thousand American children affected by the 1949 polio epidemic, I was a quadriplegic.” (p. 4)

Judith Heumann was denied entrance in school when her friends went, because they couldn’t accommodate a wheelchair. Instead, she received instruction at home — a teacher visited for two and a half hours a week. In fourth grade, she finally got to go to a school, although the program wasn’t actually designed to teach kids that the system deemed were unable to learn.

“My mother and father rightly worried that Health Conservation 21 was teaching me almost nothing, especially since I was already reading at a high school level and clearly needed an academic challenge. But they decide that it was better for me to attend Health Conservation 21 than not go to school at all.” (p. 22)

That summer, young Judy went to a summer camp for children with disabilities. She made friends and engaged in experiences that made changes for all of them.

Thoughts: I’m embarrassed to say that I never heard of Judith Heumann until someone proposed that we read this book for the Community for Understanding and Hope book group. But I’ll wager that I’m not the only person who noticed changes in my lifetime for people with disabilities, but never really thought about the people who made those changes happen.

Being Heumann is a tightly written memoir. We get just enough of her personal life to make the story interesting and to illuminate why Ms. Heumann was called to her work. There is a lot about Section 504 of the Rehabilitation Act of 1973 and less about the American Disabilities Act that followed it. Naturally, we get more details about the actions where Judith Heumann was present and less about the ones that she witnessed from farther away.

The book is short and quickly read — well worth the time.

The facilitator of our book group meeting suggested that we also watch Crip Camp, a documentary about the summer camp for kids with disabilities that had an out-sized impact on improvements in society and infrastructure since that time. Judith Heumann appears in some footage from the 1970s and was also interviewed for the film. I watched Crip Camp on Netflix, but they put the whole film on YouTube as well:

Besides the interesting story, I enjoyed the music, songs from the late 1960s and early 1970s.

Appeal: Read this if you lived through the 1970s to 1990s without being aware of the fight for civil rights for people with disabilities. That information gap should be filled, especially knowing that all of us are likely to live with a disability, at least temporarily, in our lifetimes. I watched an elderly man, on a bright yellow electric scooter, take a solo outing along the riverfront of a small town this week. His continued independence relies on curb cuts, ramps, and handicap parking places. My independence may one day rely on those things, too. We have Judith Heumann and her fellow activists to thank for that.

One reason that we selected this book, this year, was to honor the life of Judith Heumann who died in 2023 at age 75. For a quick introduction, check out her TED Talk from 2017.