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Cover of Being Heumann by Judith Heumann

She Paved the Way for Disability Rights

Being Heumann: An Unrepentant Memoir of a Disability Rights Activist (Beacon Press, $16.00), by Judith Heumann with Kristen Joiner, wants to give its reader a taste of what it’s like when impediments are actively, passively, and constantly placed before you as you attempt to live your life.

Heumann, an internationally recognized leader in the movement for disability rights, and a featured character in the recent documentary film Crip Camp, has written a rousing memoir. At the book’s beginning, she shares the story of growing up the child of Holocaust survivors; at age six, she became a quadriplegic due to polio. She describes her struggle for even the smallest elements of childhood, like playing with a neighbor whose front stairs were insurmountable. But her theme is evident as she notes how with cooperation and innovation, possibility superseded obstacles: “It didn’t occur to me then to think it unusual that I joined in all the kids’ games in my wheelchair. Because there was never a question of whether or not I would play too—we all figured out a way for me to do whatever everyone was doing.”

When it came time for school, Heumann’s parents were told that their daughter would be a “fire hazard,” blocking the way for other children in an emergency, and therefore she couldn’t go to school. Heumann recounts her efforts to get an education as her harsh induction into a world that would rather dwell in impossibility than innovate—a world that saw her and those like her as irrevocably “less than.” This early insult proved to be much more formative than anyone could have bargained for, as Heumann went on to break down barriers personally to attain her own education, including going to court to protest discrimination when she was denied the opportunity to become a teacher.

Heumann did become a teacher of sorts, but in a very different way: she taught the world that the civil rights movement should expand to include the fight for disabled people to be full citizens and not denied opportunities given to others. The memoir goes on to detail her experiences fighting for Section 504 of the Rehabilitation Act of 1973, the Individuals with Disabilities Education Act (IDEA) and the Americans with Disabilities Act (ADA). Heumann’s activism, ranging from sit-ins to actively hiring and recruiting people with disabilities, is a compelling story of speaking truth to power and making a tremendous impact on the daily lives of Americans.

This memoir is a crucial read to understand the disabilities rights movement in the U.S. If I have any quarrel with the book, however, it’s that I wish it took a deeper dive into Heumann’s personal introspection and thoughts. As chroniclers of an often unacknowledged but pivotal movement, the authors evidently feel an obligation to lay out the history of disability rights in the U.S. painstakingly and explicitly, but sometimes the pages devoted to that overshadow the book’s compelling protagonist. The most profound parts of the book are those in which we become privy to her innermost thoughts, feelings and insights. I wanted more of those moments.

Jordana Horn is a writer working on a book about parenting lessons learned during the pandemic.