Being Heumann Book Cover

Edition 21 | Summer 2020

An unrepentant memoir of a (BADASS) disability rights activist

by Sarah Farrell

When you think about civil rights leaders, Martin Luther King Jr., Cesar Chavez and Nelson Mandela come to mind straight away—followed by images of marches, protests and great speeches.

Few would put the name Judith Heumann on that list.

But after reading her recently released memoir, “Being Heumann: An Unrepentant Memoir of a Disability Rights Activist,” this Brooklynite unquestionably belongs there.

Heumann, now in her 70s, has spent her whole life championing disability rights and the independent living movement in the United States and around the world.

As a non-disabled reader, this book brought the disability rights movement into perspective. It was informative in providing historical context and illustrating the emotions and experiences of living with a disability.

“She wasn’t on the radar in terms of a household name, and that really bothered me,” Kristen Joiner, co-author of Being Heumann, said in a Zoom interview with LivAbility Media, “because I think that her achievements and her leadership have achieved parallel results [as other civil rights leaders]. It was really important in the book that we show that Judy is a civil rights leader.”

This novel masterfully combines Joiner’s engaging writing style with Heumann’s penchant for storytelling and calculated approach to advocacy.

With the initial section dedicated to her youth, readers truly get a sense of the experience of growing up with a disability in New York City in the 1940s.

Modern features like ramps and curb cuts were merely non-existent.

And it had a significant impact on Heumann’s life. As someone who used a wheelchair, she was barred from attending public school for many years as officials claimed her wheelchair was a fire hazard.

Beyond that, an overarching theme of the first few chapters is the impact that Heumann’s family members had in shaping who she became and who she is today.

At the dinner table, Heumann, her parents and brothers would have heated conversations on almost any topic. It’s where she learned to hold her own in discussions. If they invited people over for dinner, most would leave asking why they didn’t know what happened at the Heumann dining room table.

As a teenager, Heumann attended Camp Oakhurst in New York City and later became a counselor at Camp Jened in Rock Hill, New York.

“At camp, we tasted freedom for the first time in our lives,” she wrote.

Camp Jened, explored extensively in the Netflix documentary “Crip Camp,” was a summer camp for people with disabilities, and as Heumann describes, an incredibly empowering experience.

“Camp was for us,” Heumann wrote. “It was designed specifically with our needs in mind and our parents paid for us to be a part of it. Our participation wasn’t contingent on someone else’s generosity; it was a given camp, I thought, was what it would feel like if society included us.”

The in-depth discussions and bonding that occurred at Camp Jened would come to play an essential role in the disability rights movement-building shortly thereafter.

In 1977, Heumann and other leaders helped organize the 504 sit-in in San Francisco. It was part of a nationwide series of protests aimed at getting Section 504 of the Rehabilitation Act of 1973 signed and enforced.

“Section 504 had redefined disability,” Heumann wrote, “instead of looking at disability as a medical issue, it had made disability a question of civil and human rights.”

It was the most prolonged, non-violent occupation of a federal building in U.S. history, and the protest was overwhelmingly inclusive. Members from every segment of the disability community–even other civil rights groups like the Black and Grey Panthers–were involved. Heumann and other leaders made sure that every person had the opportunity to voice their opinion.

“We were sure that the only way to maintain the group [of over 100 people] was to create an overwhelming sense of unity–and the only way to do that was to be totally inclusive and open,” Heumann wrote. “We waited until every single person had arrived and the sign language interpreters were ready to start translating [before starting the meeting].”

The final section of the book details Heumann’s extensive career in advocacy, after the successful signing of Section 504. She helped found the World Institute on Disability, served as the World Bank’s first advisor on Disability and Development, and worked within both the Clinton and Obama administrations in the Office of Special Education and Rehabilitation Services and State Department, respectively.

This novel illustrates Heumann’s personal history and the history of the disability rights movement as a whole.

Joiner, who is also non-disabled, said that this book was truly written for anyone to read and enjoy. This is especially so for those who do not know the whole history of the disability rights movement or understand its context within civil rights in this country. In my opinion, this book is a must-read for people of all ages and abilities.

Kristen Joiner

Kristen Joiner is an award-winning entrepreneur in the global nonprofit and social change sector.

Judith Heumann

Judith Heumann is an internationally recognized leader in the Disability Rights Independent Living Movement.

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Sarah Farrell

Sarah Farrell | Writer | @thesarahfarrell

Sarah Farrell holds a master’s degree in sports journalism from the Walter Cronkite School of Journalism and Mass Communication at Arizona State University, and a bachelor’s degree in communication with a minor in sports management from Trinity University. She is a Texas native who has fallen in love with hiking the Arizona wilderness.

Read more by Sarah Farrell.