Soon to be an Apple feature movie directed by CODA’s Siân Heder and starring BAFTA-nominated actress Ruth Madeley as Judy Heumann
“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
“Her life story as an activist will enlighten readers everywhere.”—Gloria Steinem
“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
One of the most influential disability rights activists in US history tells her personal story of fighting for the right to receive an education, have a job, and just be human
A story of fighting to belong in a world that wasn’t built for all of us and of one woman’s activism—from the streets of Brooklyn and San Francisco to inside the halls of Washington—Being Heumann recounts Judy Heumann’s lifelong battle to achieve respect, acceptance, and inclusion in society.
Paralyzed from polio at eighteen months, Judy’s struggle for equality began early in life. From fighting to attend grade school after being described as a “fire hazard” to later winning a lawsuit against the New York City school system for denying her a teacher’s license because of her paralysis, Judy’s actions set a precedent that fundamentally improved rights for disabled people.
As a young woman, Judy rolled her wheelchair through the doors of the US Department of Health, Education, and Welfare in San Francisco as a leader of the Section 504 Sit-In, the longest takeover of a governmental building in US history. Working with a community of over 150 disabled activists and allies, Judy successfully pressured the Carter administration to implement protections for disabled peoples’ rights, sparking a national movement and leading to the creation of the Americans with Disabilities Act.
Candid, intimate, and irreverent, Judy Heumann’s memoir about resistance to exclusion invites readers to imagine and make real a world in which we all belong.
Read our press release about the film adaptation!
“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
“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
A Note from Judy
Prologue
PART ONE: BROOKLYN, NEW YORK, 1953
CHAPTER 1
The Butterfly
CHAPTER 2
Insubordinate
CHAPTER 3
To Fight or Not to Fight
CHAPTER 4
Fear of Flying
PART TWO: BERKELEY, CALIFORNIA, 1977
CHAPTER 5
Detained
CHAPTER 6
Occupation Army
CHAPTER 7
Soldiers in Combat
CHAPTER 8
The White House
PART THREE: BERKELEY, CALIFORNIA, 1981
CHAPTER 9
The Reckoning
CHAPTER 10
Chingona
CHAPTER 11
Humans
CHAPTER 12
Our Story
Acknowledgments
Notes
- “Late Disability Rights Activist Judy Heumann’s Landmark Memoir, Being Heumann, Coming to the Screen in New Film from CODA Director Siân Heder,” Beacon Press on Substack, press release about the Judy Heumann biopic
- “Because she made a fuss, Judy Heumann made everyone’s life better,” MSNBC/Rachel Maddow, tribute to Judy Heumann
- “Activist and Author Judith Heumann Dies at 75,” Kirkus Reviews, tribute to Judy Heumann and obit
- “Beacon Books Making the Jump from the Page to the Screen,” Beacon Broadside, featured in blog write-up
- “Disability Is a Thread in the Fabric of Life: A Reading Guide for Disability Pride, ” Beacon Broadside, listed in reading roundup
- “A Brief But Spectacular take on the disability rights movement,” PBS NewsHour, “Brief But Spectacular” video essay
- “5 Simple Ways To Make The Workplace Better For Disabled Employees,” Refinery29, book mentioned in piece
- “She’s considered the mother of disability rights — and she’s a ‘badass,’” The Washington Post, feature on author
- “What We’re Reading,” Learning for Justice (formerly Teaching Tolerance), book listed in “What We’re Reading” column in their Spring 2021 issue
- “Being Heumann,” Jewish Standard, article promoting Congregation Beth Sholom event
- “The 25 day sit-in that changed history,” Outlook/BBC World Service Radio, interview
- “The Summer Camp That Inspired The Disability Rights Movement,” On the Media/WNYC, interview
- “The Americans With Disabilities Act At 30,” 1A/National Public Radio, panel discussion hooked to ADA 30th anniversary
- “Disability Pride: The High Expectations of a New Generation,” The New York Times, report
- “30 Years After a Landmark Disability Law, the Fight for Access and Equality Continues,” TIME, feature for 30th anniversary of ADA
- “What the A.D.A. Means to Me,” The New York Times, profile
- “Crip Camp Star Judith Heumann Explains How Summer Camp Led To A Disability Rights Revolution,” St. Louis on the Air/St. Louis Pubic Radio, live phone interview
- “Sunday Show – April 19, 2020,” Morning News/KPFA Radio (Bay Area), live phone interview
- “Judith Heumann | Being Heumann: An Unrepentant Memoir of a Disability Rights Activist,” Free Library of Philadelphia, podcast recording of virtual event on 4/16/2020
- “How We’re Silenced—and the Power of Judy Heumann,” Ms. Magazine, essay
- “The Power of Spaces Built for People with Disabilities,” Literary Hub, excerpt
- “New Works by Writers with Disabilities Hit Publisher Lists,” Publishers Weekly, piece featuring Q&A with Heumann and Joiner
- “How a Free-Spirited Summer Camp for Disabled Teens in the ’70s Changed the World,” People, 4-page print feature in April 13 issue
- “This woman was the first wheelchair rider to become a teacher in New York City,” Good Morning America, online video interview
- “In Crip Camp, a rare spotlight for disability rights,” Washington Post, feature
- “How Judy Heumann Found Her Voice As a Disability Rights Activist at Summer Camp,” Shondaland, story about Crip Camp and author’s work in disability community
- “Episode 167: Judith Heumann Crip Camp (Netflix), Author Being Heumann,” Pop Culture Confidential, podcast interview
- “Why Netflix’s Crip Camp is a landmark for disability representation on screen,” Entertainment Weekly, story on Crip Camp documentary quotes author
- “The Activist Star of Crip Camp Looks Back at a Life on the Barricades,” The New York Times, Q&A
- “1977: Judith Heumann,” TIME, named 1977’s “Woman of the Year” as part of the magazine’s “100 Women of the Year” project
- “Confronting shame—and accepting my disability—with Judy Heumann,” Ford Foundation Blog, Q&A
- “Disability activist will spread her message of inclusion for all at Tucson Festival of Books,” Arizona Daily Star/Tucson.com, write up on book in advance of Tucson Festival of Books
- “Judith Heumann—Defying Obstacles in Being Heumann and Crip Camp,” The Daily Show with Trevor Noah/Comedy Central, interview
- “Reads for the Rest of Us: Feminist Books Coming Out in 2020,” Ms. Magazine, included in upcoming feminist reading roundup
- “Expand the Movement, Fight For Everyone’s Equality,” New Mobility Magazine, Q&A
- “A Talk With Disability Rights Activist Judith Heumann,” Hadassah Magazine, Q&A
Being Heumann: An Unrepentant Memoir of a Disability Rights Activist
Readers’ Guide Discussion Questions
Download the PDF
Judy Heumann spent her life fighting for disabled people to be able to take their place in society as equal citizens. She argued that disability is not a problem to be fixed but a natural part of the human experience—and that attitudes toward disabled people are the real barrier they face. These questions are an invitation to sit with Judy’s life and ask where her experiences touch your own.
- Early in her life, Judy is denied entry to school because she is considered a “fire hazard.” After she finishes college and has passed her exams to become a teacher, she is denied her teaching certificate on medical grounds. Later, when she fights for the Section 504 regulations to be signed for all disabled people, she is told that ensuring access is too expensive. Judy’s exclusion is explained away alternately as a safety issue, a medical problem, and a cost issue. Judy writes: “The truth is, the status quo loves to say no. It is the easiest thing in the world to say no, especially in the world of business and finance. But for the first time we were discussing civil rights, and no other civil rights issue has ever been questioned because of the cost.” What does Judy mean by this? How do these explanations appear reasonable and practical on the surface? What are they hiding?
- The idea that disabled people don’t need pity, charity, or admiration but require equal rights instead is a central theme of the book. What are the unspoken stories you have absorbed about disability and disabled people?
- The 1977 sit-in ultimately succeeded partly due to the support of a variety of very different groups and political organizations. For example, the Black Panthers delivered food, unions and churches sent endorsements of support, and the sit-in itself relied on previously separate disability groups coming together in a coalition. What type of leadership on the part of Judy and the other leaders made this type of coalition building possible? When have you experienced a moment of strength in your life that relied on the support of other people or collective action—versus going it alone?
- Judy was raised to believe that “no” was not always the final answer, which her mother modeled for her with a fierce determination. She writes, “The day-to-day work of fighting fell on my mother, which I take as a sign. Because if the universe really hadn’t wanted me to go to school, it wouldn’t have made Ilse Heumann my mother. Telling Ilse Heumann that something wasn’t possible was a big mistake.” When in your own life has refusing to accept a “no” changed what became possible? Is there a “no” you’re still living with that might be worth questioning?
- Throughout her life, Judy had to fight to simply be seen—to be counted as part of “everyone.” For example, when her mother took her to a public school for her first day of kindergarten and was told that Judy could not attend due to her use of a wheelchair, the implicit meaning was: This school is for everyone except those who use wheelchairs. Whose experiences are still left out despite institutions, schools, workplaces, or communities saying they serve “everyone”? What would it take to widen the circle?
- Being Heumann, the movie, focuses on the events of the sit-in and tells the story of several of the protesters, alongside Judy’s story. Why do you think the filmmaker made this choice? What can a film do that a book cannot? And what can a book do that a film cannot?
- Judy writes, “Our anger was a fury sparked by profound injustices. Wrongs that deserved ire. And with that rage we ripped a hole in the status quo.” The emotion of anger runs through this book—not as bitterness but as fuel. Yet, at the same time, Judy never writes anyone off or dismisses anyone as unreachable. When has anger helped you see your values clearly, helped you set a boundary, or confront an injustice? How do you keep asking for what you want without writing anyone off, even when you’re angry?
- Judy writes about her parents and how they influenced her later actions. She describes how the dinner conversations with her father, growing up, taught her to argue. And how her mother’s participation in community life affected her awareness of others. She says, “My parents weren’t obstinate or antiauthoritarian; they were thinkers. They had learned what happens when hatred and inhumanity are accepted. Both my father and my mother were brave people who lived by their values. They had personally experienced 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 something 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.”How do these influences affect Judy’s choices and accomplishments? Who has influenced you and in what way? Who do you influence?
- So much of Judy’s fight was about being able to access what much of society takes for granted, from classrooms and the workplace to transportation. Her inability to access these areas affected her ability to participate fully in society, for example, when she and her friends couldn’t go to theaters or restaurants because of the lack of space for wheelchairs, or when disabled activists couldn’t physically get to the protests because they couldn’t get on a bus. Where have you noticed that access, or lack of access, influences who gets to be a part of everyday community places and events? What barriers prevent some people from being present and visible in the course of our everyday lives?
- Some of the people who fought with Judy did not live to see the end result of their incredible contribution. They left behind a legacy, and the fight for the inclusion of people with disabilities is very present still today. What are the issues that the disability rights movement faces today? How could you support their fight?
These questions were written by Kristen Joiner. She is a writer, speaker, and producer. Her work in social change led her to Judy Heumann and the five years they spent co-writing Being Heumann. Her writing has appeared in Stanford Social Innovation Review, Ms. Magazine, and elsewhere. She speaks at universities, nonprofits, and conferences on social change, storytelling, and her work with Judy.