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Being Heumann: An Unrepentant Memoir of a Disability Rights Activist Hardcover – February 25, 2020
by Judith Heumann (Author), Kristen Joiner (Author)
4.8 out of 5 stars 651 ratings
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A Publishers Weekly Best Book of the Year for Nonfiction
"...an essential and engaging look at recent disability history."— Buzzfeed
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.
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Print length
240 pages
Language
English
Publisher
Beacon Press
Publication date
February 25, 2020
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From the Publisher
"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
"Judy Heumann embodies resilience, strength, and compassion and can help others build these within themselves and their community. All who read her book will be better for it." - Sheryl Sandberg
Editorial Reviews
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 is an internationally recognized leader in the Disability Rights Independent Living Movement. Her work with a wide range of activist organizations (including the Berkeley Center for Independent Living and the American Association of People with Disabilities), NGOs, and governments since the 1970s has contributed greatly to the development of human rights legislation and policy benefiting disabled people. She has advocated for disability rights at home and abroad, serving in the Clinton and Obama administrations and as the World Bank’s first adviser on disability and development. Connect with her on Twitter (@judithheumann) and Facebook (TheHeumannPerspective).
Kristen Joiner is a writer and activist who tries to tell stories that change how people see the world. Her writing on exclusion, inequality, and social change has been published in Ms. Magazine, Stanford Social Innovation Review, The Spin-Off, Stuff and other outlets. She lives in New Zealand with her husband and three children.
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.
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Product details
Publisher : Beacon Press (February 25, 2020)
Language : English
Hardcover : 240 pages
ISBN-10 : 0807019291
ISBN-13 : 978-0807019290
Item Weight : 15.2 ounces
Dimensions : 5.71 x 0.96 x 8.9 inchesBest Sellers Rank: #142,251 in Books (See Top 100 in Books)#139 in Biographies of People with Disabilities (Books)
#301 in Social Activist Biographies
#823 in Women in HistoryCustomer Reviews:
4.8 out of 5 stars 651 ratings
About the authors
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Kristen Joiner
Kristen Joiner tries to tell stories that change how people see the world. She worked in the non-profit sector for twenty years before becoming an author. Her writing on empowerment, inclusion and human rights has been published in Ms. Magazine, Stanford Social Innovation Review, Stuff and other outlets. Connect with her on Twitter (@kristenjoiner).
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Judith Heumann
Judith Heumann is an internationally recognized leader in the Disability Rights Independent Living Movement. Her work with a wide range of activist organizations (including the Berkeley Center for Independent Living and the American Association of People with Disabilities), NGOs, and governments since the 1970s has contributed greatly to the development of human rights legislation and policy benefiting disabled people. She has advocated for disability rights at home and abroad, serving in the Clinton and Obama administrations and as the World Bank’s first adviser on disability and development. Connect with her on Twitter (@judithheumann) and Facebook (TheHeumannPerspective).
Author photo: Rick Giudotti for Positive Exposure
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Top reviews from the United States
Sasha M. Guzman
5.0 out of 5 stars Learning To Be An Ally!Reviewed in the United States on July 3, 2022
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I have taught a unit on the fight for civil and human rights within the disabled community a couple of times using the “Crip Camp” documentary. It sparked an interest in her autobiography and I’m so glad I bought this book! It’s brings out all the range of emotions: rage, sadness, disbelief while giving so much insight to the movement within the United States. It inspires me to be an even stronger ally & to continue teaching young people about this little known history of our country.
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AmethystWoman
5.0 out of 5 stars Amazing book.Reviewed in the United States on January 1, 2022
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Everyone should read this esp if you care about anyone affected by any Disability, even aging as we are all just temporarily able-bodied! Read how the ADA is being dismantled! What people on wheels did for the rights of all is herculean. I esp enjoyed the audiobook. Really well read by the non-author. I had to keep reminding myself it was not the author. I am humbled by Judy Heumann's energy, caring, and her as a resource. She has a real place in herstory - but would make sure others got the credit. I fell in love with her as a person. The end raises great questions even tho I've been disabled my whole adult life. I, shamefully, didn't know what was being done to help my life. Please read this book. It will change your thoughts forever. What you read you will never forget as she puts you in the room with her and behind the eyes of many disabled people's lives. See what injustice feels like firsthand. Really get it. Fall in love with Judy, her energy, and her dedication. I am humbled.
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Catherine C. Payne
5.0 out of 5 stars Better understand of our family’s naive experience with the 1949 Detroit, MI polio epidemic...Reviewed in the United States on April 30, 2020
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Ms. Heumann’s autobiography was absolutely fascinating to me as, for the first time, I was able to compared, contrast, and better understand the massive difference between her and her family’s experience with polio, compared with our family’s little discussed experience. What a difference an area and family make!
We had loving, but naive parents, with little to no concept of possible resources for my sister. Basically, she was trapped at home (not even a thought of a ramp) throughout her formative late teen years. It took me the first chapter to have my “Aha!” moment: aside from parental difference which were huge, unfortunately, we lived in an isolate area of the city of Detroit with absolutely no resources whatsoever for anyone with any kind of disability, much less as severe a disability from polio my sister experienced.
Another clearly life-changing difference was the crucially critical timing; my sister was seven in 1949 when she contracted polio; I believe Ms. Heumann was three-ish or so. Whatever the age difference, though quite small, made a massively huge difference in terms of changes and services offered to the disabled.
I deeply regret and was saddened to realize, that while growing up, I was completely blind to the gigantic differences in the life of my beloved sister and lifelong mentor. Compared with Ms. Heuman’s, woefully lacking and inadequate experience, her’s still seemed more enriched (though obviously a seriously imperfect experience).
Comparatively speaking, my sister’s experience was downright gruesome compared to Ms. Heuman’s.
I am so grateful Ms. Heumann had the resources and personal gumption to make such massive changes, obviously leading to the Disability Rights Act. Thank you, Ms. Heumann for all you did to make the world easier for those needing such simple changes. (When curb cuts and ramps became ubiquitous, I took note that I, as well as many other *TABs, headed directly to them as most everything designed for the disabled, are easier routes for everyone.
*TABs: Temporary Able Bodies
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5.0 out of 5 stars Must Read!!!Reviewed in the United States on February 7, 2022
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Absolutely fascinating insider story looking at how government works, how laws are made and unmade and evolve. That the story centers around the foundation of a civil rights movement, indeed, THE foundational civil rights movement is remarkable. This book expands the mind, challenges the reader, and shines a light into what different futures might look like.
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Stuart M. Butler
5.0 out of 5 stars Amazing book: part history, part personal story of empowermentReviewed in the United States on March 27, 2020
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This is a terrific book! Activist Judith Heumann shares her personal story of empowerment. But this isn't just personal empowerment, it is the story of how she, along with other persons with disabilities, changed our world and made it better for all of us. This powerful book instructs us on how to build a movement, how to make it inclusive, loving and fun. We see how Ms. Heumann included people of all disabiilties and those without who came together for a common purpose. She helps us see in this pivotal book how leveling the playing field for people with disabilities helps all of us in society. I enjoyed learning about Ms. Heumann's early life and how it shaped her into the special person she is today. I appreciated her honesty about herself as well as her insights which she so thoughtfully shares with the reader. After reading the book, I watched the film, Crip Camp: A Disability Revolution, on Netflix. The film, which was nominated for an Oscar in the documentary category, is a perfect accompaniment to the book. Many of the activists Ms. Heumann includes in her book attended this camp for kids with all kinds of disabilities. The film shows footage of this amazing camp and then interviews some of the participants as adults. They describe their experiences and then how they went on to build a disability rights movement with Ms. Heumann. As a youth, Ms. Heumann was already organizing her fellow campers, showing her traits of fairness and inclusivity. I highly recommend this book to people with knowledge of the disability rights movement - which continues today - or for those individuals who want to learn about it.
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Steve Of Vashon
5.0 out of 5 stars Brings recent disability history aliveReviewed in the United States on March 20, 2022
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Well written memoir about the people and events that led up to the ADA. Having read it I have a deeper appreciation of the struggle of those who helped bring about a more equitable world for persons with a disability.
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Brian Whyte
4.0 out of 5 stars Thanks HeumannReviewed in the United Kingdom on May 2, 2021
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Once I started reading this, I simply couldn’t stop. I first heard of Judith Heumann on a Netflix show called “Crip Camp” which was about the freedom a group of people with disabilities in their teens experienced in an annual camp they would go on. They would get to choose themselves what clothes they wanted to wear, what they wanted to eat and got an opportunity for sexual experiences. This was during the sixties, when their lives at home were very stifled. Importantly key friendships were formed that would later play a key role in the disability rights movement in the US. The camp is mentioned in the book, but it only takes up a few pages.
Heumann was affected by polio from a very early age, leaving her with limited use of her arms and legs. Her fight for anything even approaching equality started at an early age. The doctor told her parents that they should institutionalize her. But having fled the Nazis, this was not something they would let happen. None of the local schools would accept her, with one calling her a “fire hazard”. A regular blocking tactic used against those with disabilities. But, she had a strong advocate in her mother, who eventually managed to get her into a special school at the age of nine. Fortunately, her mother had been teaching her prior to that so had not fallen behind the curve.
From this inauspicious start, she goes on to become one of the most influential disability rights activists in US history fighting for the right to receive an education, have a job, and just be human.
As regards her activism, there are two things she is best remembered for. One is for suing the New York school system based on them refusing to give her a teacher’s license due to her disability and the second is for the role she played in the 1977 Section 504 sit in of Federal Buildings. Section 504 more or less outlawed organizations that received federal funding from discriminating on the grounds of disability. However, the Government were slow to enact the law leading to the sit in. It was the longest takeover of a government building in history. Of course, it wasn’t plain sailing and this was probably the most interesting part of the book as a complex game of strategy and intrigue played out.
The passing of Section 504, was an important precedent of the later American with Disabilities Act whose consequences reverberated around the world leading to many other countries following suit.
An important insight is also provided into the early beginnings of the CIL movement, not only through her own struggles, but also the different roles she played in Berkeley where it all began. She also documents trying to spread the movement internationally, something that has benefited many people with disabilities in Ireland.
Heumann is the type of woman, the movement as a whole was very luck to have. Steely, driven with a supreme intellect I can’t shake the feeling she underplayed her role in important events.
The only drawback to this memoir is that at times it is too heavy on facts and lacks a more personal touch. Her romantic relationships are barely covered and truly intimate details are rarely disclosed. The price is also steep, having paid twelve euro for an electronic version. It’s way too high.
Overall, I’d give this book four stars out of five.
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師走人
5.0 out of 5 stars Glimpse of personal historyReviewed in Japan on May 8, 2020
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Not every event experienced by Judy is reported, but impressive enough to look back how far US disability rights activists have come. Few have had the chance to listen to her talk on her history, and the book is worth to understand some of crucial moments in the past.
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August 14, 2020
3.5 very conflicted stars.
Judith Heumann has lived an impressive and profoundly influential life. Unfortunately, this book itself is less than amazing. I seem to disagree with the majority but stick with me. I am not rating Judith or her life or achievements. I am rating the book. And for that, once we got past her childhood I really began to struggle to get through what’s ultimately a rather short book. Oddly, saying that I struggled through- I actually think I may have liked it more had it been longer.
Let’s summarize some of the incredible things Judith was involved with. Paralyzed by Polio at 18 months, in early childhood she was not allowed to attend school. Her parents wanted better for her and fought and fought, eventually finding a school for disabled kids though the education was horrible. Later Judith goes to college and wants to be a teacher, she had often taken on the role of teaching and helping the other students in her class. But her use of a wheelchair is used as an excuse not to hire her. She fights this. This is the start of her incredible advocacy work, fueled in part by the earlier advocacy of her mother. Judith played an integral role in finally getting Section 504 of the Rehabilitation Act passed. She was one of the leaders of the 24 day sit-in protest in San Fransisco and its an incredible story. This eventually lead to the Americans with Disabilities Act being passed, again something she had some involvement with. She helped form or lead a number of important disability related advocacy orgs. She eventually worked under Bill Clinton’s White House as assistant secretary in the Office of Special Education and Rehabilitative Services in the Department of Education.
There’s a lot of disability history here and a lot of talk about disability discrimination and human and civil rights. Personally, I already knew much of this history as a disabled political junkie. I did like hearing some of the details about how entwined the early Disability Rights movement was with the Civil Rights movement. When they were not allowing food into the building during the 504 protest, a group of Black Panther party members breaks in and brings hot meals for everyone. There’s a lot of other really awesome collaboration and I wish this was discussed and taught about more.
However...
I was baffled for awhile on just why I was struggling to read this because I so deeply long for more stories like Judy’s, stories about people like me and stories that begin to show me what kinds of things I could be capable of (or not. Having a progressive illness brings a radically different set of limitations and issues to those faced by someone like Judith who was paralyzed by Polio and therefore has a much more stable day to day). I feel a special kinship too when I read stories of people who are marginalized in more than one way like I am so her Jewishness was special to me as well. And what Judith Heumann has done with her life and the role she’s played in Disability history and the US and even international Disability Rights movement is so important.
But I think that’s the issue. This is far too heavy on the facts. The blow by blow and all the names of the 504 sit-in actually took something away from the story. And other parts were fine enough but by far the parts that interested me most were just her own thoughts and feelings. I wanted more of Judith’s story as only she could tell it. In many ways this reads a lot like a biography, something someone else has written about her. I know she worked with someone else whose name is on the book also but still, I wish we had gotten more personal. Who Judith is as a person is just as important as the things she’s done. I find it hard to care about the later without the former. And I say that as a disabled person who’s benefited from her work.
While nondisabled folks or disabled folks who aren’t as aware of disability history may learn a lot here, I suspect they’d have the same issue. I mean this isn’t a story about disability history. It’s about Judith, first and foremost m- or at least the title and focus on her would make you think that- and the specific role she’s played. I found it hard to care enough about her as much as I wanted to. There’s the tiniest little section about the man she married who is also disabled and she talks more about their accessibility needs or the language barrier (her husband is Mexican) than anything. I don’t need to know all their business but gosh, as a disabled person, if it’s rare we get to see disabled folks represented and making a real difference in the world (as opposed to being “inspiration porn” aka when disabled people are praised for just existing and doing basic things or used as a “If she could get out of bed today, so can you”), we never hear disabled love stories and relationships. Hell, disabled people still to this day do not have marriage equality. I will lose my benefits and insurance if I marry. So I just wanted more. Sure she throws in a few stories about ableism she’s faced and we hear some about how she grew up but it’s too much fact, not enough feeling. Being Heumann lacks a certain level of humanity, ironically enough.
I also want to add in here quickly- when it comes to facts as well, I noticed some number related errors that I’m surprised wasn’t caught during the editing process. When she discusses the number of people involved in the Sam Fransisco 504 sit-in she says there’s 135. Then a page or two later she says 125. And says 125 again. Then suddenly it’s 150. Similarly at another point in the book she mentions being 27. She’s asked to move to California at 27. Yet describes the months after and then literally states “a year and a half later” and ends with saying she was 27. I’m not a math person and these stood out to me. I figured it was worth mentioning though I don’t think it’s a major issue. Except that I firmly believe this book deserved a better editor or another pass or two through the editing process.
I find it difficult to rate this book. Let’s call this 3.5 very conflicted stars. But I hate how often memoirs or even fiction about illness or cancer or trauma or the Holocaust or similar get automatic praise from people over the subject. Important subject here. Subpar, if not downright disappointing book. I hesitate to recommend it. I want everyone to learn about Judith Heumann and disability history and you can gain some of that from this book. Yet there’s got to be better options out there. Or there should be. And if you, like me, are a disabled woman looking for more stories of disabled women and disabled women to look up to, well, this probably isn’t the book for you. Though I’m sort of tempted to say read it anyway. I’m very torn. You could gain everything you gain from reading this book by simply researching the history of disability rights in America. And maybe many liked the book because they didn’t know these things. Or because reading stories like this and frankly, disabled people having opportunities like this are so rare. But I don’t think it’s a particularly good memoir at all. This is why we need more disabled stories, Damn it. This is why we need more notable disabled people, to allow people like me to live our dreams and do big things. I don’t want this to be good enough. It’s not. Judith is a fascinating person. Her book, not so much.
I guess read it to learn- in a somewhat dry way- about the facts of what Judith lived through and was involved in when it comes to the evolution of the Disability Rights Movement. But don’t go in expecting so much of a memoir. Personally, I wanted the memoir. Because there are other “just the facts please” books and spaces to learn about the Disability Rights movement. That’s important. But I refuse to say this book is the book to read or even really a particularly good book. I hope that makes sense.
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Maria Seno
7 reviews
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July 25, 2020
I don’t think I have the words to do this book justice, but I’ll try.
If you have seen the Netflix documentary “Crip Camp” you will recognize some things when you read this book. If you intend to read the book, it may actually be better to read it before watching the documentary, which is not what I did.
This book brought up a lot of emotions for me because I can relate to it. I can relate to the feeling of invisibility that living with a disability causes, and I can relate to the frustration about living in an inaccessible society. It meant a lot to me to read the author’s insights about her personal experiences living with a disability and society’s lack of understanding or acceptance, but also to know that we as people with disabilities can still fight for proper treatment.
I think it’s really important for non-disabled people to read this book, too. The Americans with Disabilities Act was signed by the time I was in second grade, so I didn’t experience all that the author did, but it didn’t solve everything. The law only asks for “reasonable accommodations,” which can mean many different things. Sometimes it means the bare minimum. Older buildings don’t have to comply with the ADA at all, or they can get by with the minimum. One grab bar in an otherwise tiny bathroom that’s too small for a wheelchair to turn around. A separate “wheelchair accessible” door into a building that’s around the back by the dumpster.
Even in the USA in 2020, with all the progress that has been made toward disability rights thanks to the activism of Ms. Heumann and others, people with disabilities are still stigmatized, either with pity or inspiration, and we will continue to be until society is made more accessible so that we can become more visible. We are still seen as less important than other people, an inconvenience, a liability. The laws in place help, but they aren’t enough. Laws don’t make society treat us as normal human beings.
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Abby Johnson
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December 23, 2019
This incredible memoir paints a picture of what life was like for people with disabilities before section 504 and the Americans with Disabilities Act were passed and the incredible struggle to get them passed. Judith Heumann got her start in activism accidentally when she was forced to sue the New York Board of Education for denying her a teaching license due to her physical disability. After fighting for herself, she never stopped fighting for her rights and the rights of people with disabilities in this country and the world.
With the 30th anniversary of the passing of the Americans with Disabilities Act (which brought about changes such as curb cuts and accessible city buses) coming up in July 2020, this is the perfect time to delve into the life of an influential disability rights activist.
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Karen
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March 9, 2020
An impressive person and an interesting history lesson, but I'm not sure how I feel about the book itself. Like many books about accomplished leaders, it sort of reads as "then I did this, and then I did this, and then I was just leading everything" without that much sense of what's going on in the person's head or how how they became the sort of leader and activist they did. In this case, she tries, but it's just a short book. Also, the pacing and focus was uneven. The first third read like a biography, telling us about her childhood and education. The middle third described in detail one particular protest, and the last third whizzed through the rest of her career.
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