Review
“Thoughtful and illuminating, this inspiring story is a must-read for activists and civil rights supporters.”
—Publishers Weekly, Starred Review
“A driving force in the passage of the Americans With Disabilities Act looks back on a long career of activism . . . A welcome account of politics in action, and for the best of causes.”
—Kirkus Reviews
“Consider this book an inspiring call for inclusiveness, courage, equity, and justice as well as a reminder of people’s power to change the world for the better.”
—Booklist
“Heumann’s personality shines throughout. Her voice is witty, persistent, and at times irreverent as she immerses readers in her story.”
—Library Journal
“With an energetic pace and a youthful voice, Ali Stroker narrates disability rights activist Judith Heumann’s memoir. . . . Along with her friend and mentor, the late Ed Roberts, Heumann is a freedom fighter Americans need to know. This audiobook makes getting acquainted a delight.”
—AudioFile Magazine
“Reading this memoir is like sitting down with a good friend and talking for hours, as self-described extrovert Heumann tells powerful and engaging stories from the frontlines of the disability civil rights movement.”
—Health Affairs
“A moving chronicle of social change, Being Heumann will restore your hope in our democracy and the power of our shared humanity.“
—Darren Walker, president, Ford Foundation
“Judy’s advocacy for disability rights began as a fight for her own future and then, as a leader of the movement, spanned the nation and the globe. As secretary of state, I relied on Judy’s insights, knowledge, sass, and wit to elevate advocacy for disability rights in our diplomacy. This important book will help ensure that every person gets a chance to live up to their full potential and will always have a place at the table.”
—Hillary Clinton
“It’s one of the ironies of American life that the one category into which almost all of us will fit at some time in our lives—people with disabilities—is often the last on the list of included groups in this country. . . . I met Judy Heumann almost four decades ago, and her writing, activist skills, and kindness helped me to see this simple truth. Her life story as an activist will enlighten readers everywhere.”
—Gloria Steinem
“Judy’s vision of a society that embraces all aspects of the human condition and where we face adversity with wisdom is truly transformative. . . . All who read her book will be better for it.”
—Sheryl Sandberg, COO of Facebook, author of Lean In
“Judy’s story has shaken me to the core. For the first time, I see myself in someone else. Her fierce advocacy and work changing the laws around disability rights have undeniably paved the way for me to achieve what I have today. . . . A must-read.”
—Ali Stroker, Tony Award–winning actress
“A marvelous memoir by a disability hero who has paved the way for many of us. Full of fascinating stories from the disability rights movement, this book will guide future leaders as we work toward a barrier-free world.”
—Haben Girma, author of the bestseller Haben: The Deafblind Woman Who Conquered Harvard Law
“Being Heumann changed me. This clear-eyed, gripping book is necessary reading for anyone in a body. Judy Heumann is a true heroine: practical, courageous, and totally badass.”
—Sharon Guskin, author of The Forgetting Time
“Full of stories of triumph, love, and total badassery, Being Heumann is a look into a world and moment in history that very few know or appreciate. You don’t have to have a disability to completely relate to Judy’s story. Haven’t all of us been dismissed by others at some point in our lives? Readers will finish this book with a whole new perspective on people with disabilities and on their own lives too. Judy doesn’t just believe in the power of community and the potential of democracy to deliver equality and justice—she and her many friends and allies set out to prove, against all odds, that it is true. Their epic struggle to achieve civil rights protections for people with disabilities has remade our world, whether we realize it or not. Intimate and engrossing, this book is a profound gift. It should be read and cherished by all, as both an unforgettable portrait of one of our greatest activists and a road map for how to build a more just and inclusive world.”
—Nicole Newnham and Jim LeBrecht, directors of Crip Camp
“For everyone who cares about human rights around the world, Judith Heumann’s moving story and message of belonging is also a powerful call to action. A must read.”
—Yetnebersh Nigussie, disability rights activist
“If you’re searching for an excellent primer on the disability justice movement or a firsthand account of the power of the collective voice, you’ll want to pick up this book!”
—Jey Ehrenhalt, Teaching Tolerance School-Based Programming and Grants Manager
About the Author
Judith Heumann (1947–2023) was an internationally recognized leader in the Disability Rights Independent Living Movement. She served in the Clinton and Obama administrations, and she was the World Bank’s first adviser on disability and development. Heumann was the author of a memoir, Being Heumann, and her story was featured in the Netflix documentary Crip Camp: A Disability Revolution (2020).
Kristen Joiner is a writer, activist, and producer. She is the co-author of Being Heumann: An Unrepentant Memoir of a Disability Rights Activist and the YA version of the book, Rolling Warrior: The Incredible, Sometimes Awkward, True Story of a Rebel Girl on Wheels Who Helped Spark a Revolution with Judy Heumann, Former Advisor to Presidents Clinton and Obama, star of the Oscar-nominated Crip Camp, and one of the most influential disability rights activists in US history. Being Heumann has been optioned by Apple TV for a feature film directed by Oscar-winner Sian Heder (C.O.D.A.). Kristen co-founded the youth filmmaking organization, Scenarios USA, and executive produced short films written by young people and directed by award-winning directors. She lives in New Zealand with her family.
Excerpt. © Reprinted by permission. All rights reserved.
PROLOGUE
I never wished I 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 fam-ily being German immigrants. Nor 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 insti-tutionalized 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.
I don't know how my parents responded to the doctor, because my family didn’t talk a lot about things like this. But I am sure my parents would have found the idea of putting me in an insti-tution very disturbing. Both my mother and my father had been made orphans by the Holocaust. As teenagers they’d been sent to the United States. It was the time when Hitler was coming into power, when things were getting bad enough that people worried about the safety of their children but didn’t think it was going to get as bad as it did. My father came to live with an uncle in Brooklyn at fourteen, and he was lucky that his three brothers followed very soon after. My mother was an only child and was sent alone to live in Chicago with someone she didn’t know at all. The story was that a distant relative came from the States to visit my mother’s family in Germany and brought news of the worsen-ing situation.
The information convinced my grandparents to send my mother, their one child, away to live with this distant relative. I have often imagined what it must have felt like for my mother. You’re twelve years old and one day someone you don’t know, someone you’ve never met before, comes to visit your family and two weeks later you’re suddenly gone from Germany forever, living alone in Chicago with unfamiliar people. My mother always thought that her family would be together again. Even during the war, she was working to save money to bring her parents over. Only later did she learn that they’d been killed. IF I’D BEEN born just ten years earlier and become disabled in Germany, it is almost certain that the German doctor would also have advised that I be institutionalized. The difference is that in-stead of growing up being fed by nurses in a small room with white walls and a roommate, I would have been taken to a special clinic, and at that special clinic, I would have been killed.Before Auschwitz and Dachau, there were institutions where disabled children were eliminated. Hitler’s pilot project for what would ultimately become mass genocide started with disabled children. Doctors encouraged the parents to hand their young children over to specially designated pediatric clinics, where they were either intentionally starved or given a lethal injection.
When the program expanded to include older children, the doctors ex-perimented with gassing.Five thousand children were murdered in these institutions. The Nazis considered people with disabilities a genetic and financial burden on society. Life unworthy of life.So when an authority figure in their new country, a doctor, said to my parents, “We will take your daughter out of your home and raise her,” they never would have agreed to it. They came from a country where families got separated, some children sent away, others taken from their families by the authorities and never returned—all as part of a campaign of systematic dehumanization and murder.Their daughter, disabled or not, wasn’t going anywhere.
MY PARENTS WEREN’T obstinate or antiauthoritarian; they were thinkers. They had learned what happens when hatred and inhu-manity are accepted. Both my father and my mother were brave people who lived by their values. They had personally experi-enced what happens when an entire country chooses not to see something simply because it is not what they wish to see. As a result, they never accepted anything at face value. When some-thing doesn’t feel right, they taught us, you must question it—whether it is an instruction from an authority or what a teacher says in class. At the same time, my parents didn’t dwell on the past or on things that were done to them.They didn’t forget the past, and they definitely learned from it, but Ilse and Werner Heumann moved forward.
Especially Ilse. She was an optimist. And a fighter. And so am I.
I can’t say I was thinking about all these things when we took over the San Francisco Federal Building, or even when I took on the New York City Board of Education. Only now, looking back, can I see how it all came together to turn me into the person I was to become.
