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Being Heumann: An Unrepentant Memoir of a Disability Rights Activist
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.
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.
232 pages, Hardcover
First published February 25, 2020
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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.
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.
June 7, 2023
"“Until I saw this film,” she said, “I didn’t understand that there was a civil rights movement for disabled people.” I was flummoxed. It had been twenty years since the ADA had passed and thirty-five since Section 504 had been signed—a whole generation ago. And this was a person who worked in human rights every day, someone who was knowledgeable about the world. Yet it was the first time she’d either heard, or really understood, that Section 504 and the ADA was about our civil and human rights. And she was not the only one to tell me this. The problem was that the ADA had been passed without the same level of consciousness-raising…"
How many of us in the USA or otherwise give much consideration to the civil rights of the disabled?
"Part of the problem is that we tend to think that equality is about treating everyone the same, when it’s not. It’s about fairness. It’s about equity of access. And equity of access, whether to housing, health, education, or employment, looks different for someone like me and the hundreds of thousands of us who cannot do things the same way, than it does for the majority of people who can."
I wanted to include this quotation because it captures an important aspect of difference in perspective from the those who are disabled. Reading this memoir was a very effective way by the authors to show the way in which the disabled have been treated. Heumann relates a lot of her personal experiences and couples them effectively to when the USA began to consider change.
"“When I was five years old, I was denied the right to school because the school wasn’t accessible. When I was finally allowed to start school in the fourth grade, some of my classmates were eighteen years old and still didn’t know how to read."
And--
"In America, school is considered so important, that, since 1918, it has been compulsory. For everyone except us. Nobody, not the teachers, not the principal, not the New York City Board of Education, expected the special-ed kids to learn. Many didn’t expect us to progress from elementary school, to middle school, high school, university. We were expected to stay in Health Conservation 21 until we were twenty-one years old, at which point we were supposed to enter a sheltered workshop."
Judith Heumann was at the forefront of the effort to achieve change: "I helped cofound the American Coalition of Citizens with Disabilities as a mechanism for tracking Section 504 and making sure it was implemented in a way that worked for us. This became the first national cross-disability rights organization run by and for people with disabilities."
“Section 504” was the first “law” that recognized the “civil rights” of the disabled.
It had to confront the “conventional wisdom” of that period: "The underlying assumption is that people with disabilities have less potential to learn, less ability to contribute, are less capable. That we are less equal. Do we really believe this?”
Instead Heumann points out: “Disability is a natural aspect of the human condition. As people live longer, as we fight more wars, as medical care continues to improve—more and more people who might have died in an earlier era will live. Perhaps with a disability. We should accept it. Plan for it. Build our society around it."
Heumann’s recitation of the milestones in her life is a fine way to better understand what disability implies; it is also an important memoir of a period not long in the past. It was instructional and appalling how easily the Trump Administration was able to roll-back key elements of our nation’s disability programs.
Do most people now believe that Heumann’s ideas and goals for disabled people are perfectly rational? Do you concur that “health and quality of life could not just be about medical care, but needed to include the vast array of needs required to lead a healthy life—accessibility, housing, education, employment”?
Your thoughts are appreciated.
How many of us in the USA or otherwise give much consideration to the civil rights of the disabled?
"Part of the problem is that we tend to think that equality is about treating everyone the same, when it’s not. It’s about fairness. It’s about equity of access. And equity of access, whether to housing, health, education, or employment, looks different for someone like me and the hundreds of thousands of us who cannot do things the same way, than it does for the majority of people who can."
I wanted to include this quotation because it captures an important aspect of difference in perspective from the those who are disabled. Reading this memoir was a very effective way by the authors to show the way in which the disabled have been treated. Heumann relates a lot of her personal experiences and couples them effectively to when the USA began to consider change.
"“When I was five years old, I was denied the right to school because the school wasn’t accessible. When I was finally allowed to start school in the fourth grade, some of my classmates were eighteen years old and still didn’t know how to read."
And--
"In America, school is considered so important, that, since 1918, it has been compulsory. For everyone except us. Nobody, not the teachers, not the principal, not the New York City Board of Education, expected the special-ed kids to learn. Many didn’t expect us to progress from elementary school, to middle school, high school, university. We were expected to stay in Health Conservation 21 until we were twenty-one years old, at which point we were supposed to enter a sheltered workshop."
Judith Heumann was at the forefront of the effort to achieve change: "I helped cofound the American Coalition of Citizens with Disabilities as a mechanism for tracking Section 504 and making sure it was implemented in a way that worked for us. This became the first national cross-disability rights organization run by and for people with disabilities."
“Section 504” was the first “law” that recognized the “civil rights” of the disabled.
It had to confront the “conventional wisdom” of that period: "The underlying assumption is that people with disabilities have less potential to learn, less ability to contribute, are less capable. That we are less equal. Do we really believe this?”
Instead Heumann points out: “Disability is a natural aspect of the human condition. As people live longer, as we fight more wars, as medical care continues to improve—more and more people who might have died in an earlier era will live. Perhaps with a disability. We should accept it. Plan for it. Build our society around it."
Heumann’s recitation of the milestones in her life is a fine way to better understand what disability implies; it is also an important memoir of a period not long in the past. It was instructional and appalling how easily the Trump Administration was able to roll-back key elements of our nation’s disability programs.
Do most people now believe that Heumann’s ideas and goals for disabled people are perfectly rational? Do you concur that “health and quality of life could not just be about medical care, but needed to include the vast array of needs required to lead a healthy life—accessibility, housing, education, employment”?
Your thoughts are appreciated.
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.
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.
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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December 23, 2019This 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.
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.
April 5, 2024
Judy was a powerhouse since childhood! We are fortunate to be living in a world impacted by Judith Heumann and the many others who fought tirelessly for the rights of people who are disabled. I am grateful to have learned so much about the realities of disability rights in the USA from this memoir alone. I am encouraged to continue my learning while supporting and furthering the efforts of the disability rights movement. Rest in Power, Judy!
April 8, 2023
Perhaps Brené Brown paraphrased Judith Heumann’s life story in a nutshell with this quote: “What we don’t need in the midst of struggle is shame for being human.” The first sentence of Judy’s memoir, Being Heumann: An Unrepentant Memoir of a Disability Rights Activist, reads, “I never wished I didn’t have a disability.” Imagine. Judith Heumann was born on December 18, 1947, in Philadelphia, Pennsylvania. When she was very young, she contracted polio, and for all intents and purposes, she was a quadriplegic, although she did have some limited use of her arms and hands. Her parents, who were German immigrants, were advised to place her in an institution. Because of their experience in war-torn Germany as orphans, this was a no-brainer. Judy would stay at home. The family subsequently moved to New York, where Judy made friends, like any other child. However, because New York City schools – and virtually no public buildings – were accessible to people who used wheelchairs, Judy was not allowed to attend school. She was considered to be a fire hazard. Imagine!
She was tutored at home and became a voracious reader. She learned Hebrew as well. When her parents were finally able to get her into public school, she was put into a special education class with students of all ages and those with all sorts of different disabilities. Some kids were as old as 18 and did not yet read. After overcoming her shyness, Judy made friends and assisted those who needed it. She went on to attend high school and college, only to face yet another battle: she wanted to teach, only to be denied yet again. What she describes is an incredibly degrading experience. Even the ACLU would not help. She sued, won, and taught elementary school for three years.
The phrase, “Yet she persisted,” comes to mind. Judy became a civil rights advocate for persons with disabilities. Many people today do not remember a time when wheelchair ramps, curb cutouts, sign language interpreters at concerts and meetings, and other accessible accommodations did not exist. These are all the result of the Americans with Disabilities Act (ADA), which became law in 1990, thanks largely to the perseverance of Judy and her army of dedicated staff and volunteers. Prior to that, however, came a massive effort to pass meaningful civil rights protections for persons with disabilities in Section 504 of the Rehabilitation Act of 1973. Judy goes into great detail describing the 28-day sit-in staged at federal buildings across the country to get HEW Secretary Joseph Califano to sign the regulations as written. The San Francisco group, consisting of 125-150 protesters, outlasted all others. They received support in the form of food and water from groups such as the Black Panthers and the Salvation Army. Judy led a delegation to Washington, D.C., to pressure the Secretary and meet with others in the Carter Administration. Eventually, they won. Section 504 forbids discrimination in areas such as education, employment, and programs receiving federal financial assistance. It was a big win, but Judy and her cohorts were not done yet. This was 1977. It took another 13 years for the ADA to pass.
All of this is impressive but wait – there’s more! Judy Heumann went on to co-found the World Council on Disability. She was appointed Washington, D.C.’s first Director for the Department of Disability Services. She held positions in both the Clinton and Obama administrations, and after all that, she still wasn’t finished. She went on to use her vast knowledge and experience as the World Bank’s first Advisor on Disability and Development. As a personal footnote, she married Jorge Pineda when she was 46 years old – this woman, who as a young girl had heard so often that she was unattractive and thought she would never marry.
Never would I have learned of this amazing woman had I not turned on The Rachel Maddow Show on Monday, March 4. This day marked the death of Judith Ellen Heumann at the age of 76. Rachel had a special segment covering the life and times of a marvelous woman who showed the world what it truly means to be human.
5 stars
May 23, 2023
Whenever we think the world is growing nastier, it's important to read a book like this -- a book that reminds us that sometimes good people can truly make a difference and make life better.
"Being Heumann" is the memoir of a key disability rights activist, Judith Heumann-- one of the leading forces behind the 1990 Americans with Disabilities Act and its more limited predecessor, Section 504 of the 1973 federal Rehabilitation Act.
For me, the best part was the first 50 pages, where Heumann describes everyday life from her vantage point as a person with polio, first as a little girl, then as a young teen, then as a college student. Her matter-of-fact anecdotes make the insults and inconveniences of disability sharply clear; her naivete at the beginning underlines how much we now take for granted. Of course she couldn't go to school. At the same time, of course she played jump-rope with her friends -- by turning the rope, not by jumping.
Heumann's insider view of major events, such as a 24-day sit-in at the San Francisco office of the U.S. Department of Health, Education, and Welfare (as it was then known) in 1977, is also fascinating, as behind-the-scenes peeks usually are. How do a group of 125 people with a range of physical and mental disabilities -- wheelchair-bound, paralyzed, blind, deaf, and more -- manage medication, ventilators, showers, sleep, bathrooms, and food when they're essentially locked inside an office building with no one allowed to bring in supplies, and the phones and hot water cut off? Oh, and in the spirit of those days, everything has to be decided by consensus at daily meetings that last until 3 am because, of course, everyone has to be allowed a chance to speak.
But if the story is inherently important and often interesting, the book is --I'm sorry to say -- plodding, repetitive, and poorly written. (To give just a couple of examples: It seems as if half the scenes start with someone calling out "Judy!" or Heumann picking up the phone in her apartment, to learn the latest bit of news. And how many times does Heumann have to remind us that disability rights are civil rights, or that she's a fighter?) I would urge readers to skim the last 75 pages -- then go back to the earlier pages, to recapture their inspiration.
"Being Heumann" is the memoir of a key disability rights activist, Judith Heumann-- one of the leading forces behind the 1990 Americans with Disabilities Act and its more limited predecessor, Section 504 of the 1973 federal Rehabilitation Act.
For me, the best part was the first 50 pages, where Heumann describes everyday life from her vantage point as a person with polio, first as a little girl, then as a young teen, then as a college student. Her matter-of-fact anecdotes make the insults and inconveniences of disability sharply clear; her naivete at the beginning underlines how much we now take for granted. Of course she couldn't go to school. At the same time, of course she played jump-rope with her friends -- by turning the rope, not by jumping.
Heumann's insider view of major events, such as a 24-day sit-in at the San Francisco office of the U.S. Department of Health, Education, and Welfare (as it was then known) in 1977, is also fascinating, as behind-the-scenes peeks usually are. How do a group of 125 people with a range of physical and mental disabilities -- wheelchair-bound, paralyzed, blind, deaf, and more -- manage medication, ventilators, showers, sleep, bathrooms, and food when they're essentially locked inside an office building with no one allowed to bring in supplies, and the phones and hot water cut off? Oh, and in the spirit of those days, everything has to be decided by consensus at daily meetings that last until 3 am because, of course, everyone has to be allowed a chance to speak.
But if the story is inherently important and often interesting, the book is --I'm sorry to say -- plodding, repetitive, and poorly written. (To give just a couple of examples: It seems as if half the scenes start with someone calling out "Judy!" or Heumann picking up the phone in her apartment, to learn the latest bit of news. And how many times does Heumann have to remind us that disability rights are civil rights, or that she's a fighter?) I would urge readers to skim the last 75 pages -- then go back to the earlier pages, to recapture their inspiration.
February 6, 2024
I was first introduced to Judy Heumann when I watched Crip Camp on Netflix several years ago. The movie was inspiring and enlightening. I found this memoir to be the same. I was surprised how mad it made me, though. I never realized that on top of the discrimination that Judy Heumann faced from her disability, she faced even more discrimination for being a woman. Infuriating. I'm so glad I read this book and learned more about this amazing woman. What a leader, and what an amazing image of greatness!
October 23, 2021
It is because of Judith Heumann and others like her that I, as a wheelchair-using person, have the freedoms I do today. I was a little kid when she was really getting started on her journey. I remember my mother having to fight to get me into my neighborhood public elementary school. I cannot recommend this book enough to anyone who wants to better understand what happened before and why the fight is not yet over.
February 24, 2022
I attended school on crutches in the early 1960s. My mother always said what a nice man my principal was. The way she said it made me wonder why all the praise. He was a biggish man or so he seemed to my young eyes. What was so special? All these years I had no answer. This book helped me understand. I was lucky to go to school at all. My principal maybe was nice. I don't know. My mother was pretty though. Of that I'm sure. Thank you Judith Heumann.
March 13, 2023
Judith Heumann is an integral part of disabled history. Having her story compiled into one memoir is an invaluable resource for those interested in a first hand account of the many changes and challenges faced by the disabled community throughout her lifetime. Her memoir is a great place to start learning about ableism and its legal impacts on disabled lives, for disabled and nondisabled people alike.
The issues she worked on are all thoroughly explained in a manner accessible to nondisabled people. The fight for the implementation of section 504 has its complexities and impacts analyzed as do many other values she fought for. Although many impacts and idiosyncrasies of being disabled were not fully explored, every observation and impact is explained at its surface to then be dug into its core importance to the community.
Her participation within the disabled community, especially as demonstrated through her experience at camp and within her advocacy groups, provides an accurate description of the power and bonding within the very diverse community. The basis of disabled culture is founded on widespread acceptance which allows for the diversity within the community to be properly supported by every member despite their differences.
Despite the strength of the community, nondisabled people often ignore the community’s impact on other movements and society. With such ignorance running rampant throughout history, there has never been proper representation for disabled people in any form of media that wasn’t created by other disabled folks. The dilemma spirals into disabled people not being able to access the creations made for them because nondisabled people don’t engage with it to promote it. Disabled people have found other ways to cultivate our culture and nurture each other within the community.
The disabled community is nothing if not resilient and inclusive. With the foundation of an identity being formed by acceptance and diversity, intersectionality is always welcomed, making the community welcoming to all. The safety people find in the community provides the opportunity for them to grow their strength from others, propelling them to advocate for themselves and others within and out of the community. Intersectional connection is displayed appropriately in the depiction of the 504 sit ins, as well as the community’s strength and impact.
The memoir focuses heavily on her experience with the 504 protests and
implementation, and although it does make the pacing uneven, it deserves the extended coverage, especially considering her leadership positions throughout the process. The uneven distribution of her story causes the last section to be much too rushed, but the information and opinions presented are valuable lessons people need to learn nonetheless. The latter section also contrasts the dialect littered with, well deserved, cussing to the expository writing which finds itself to be immature at times.
Although the sentences are occasionally choppy or immature in context, it still encapsulates her experience and the emotions tied to it. It also accomplishes what very few memoirs do, growing with the subject throughout their life. It covers her experiences at a young age with the mature depth that she lacked at the time while still showing her younger self empathy and love. As the writing develops with her, it continues to bring the reader along while still appropriately defining itself to its modern audience of disabled and nondisabled folks.
Disabled life has progressed so far throughout her life, but it has not come far enough. The disabled community is strong and accepting, but it still suffers from the ignorance of nondisabled people. This is just the start, and there are many more disabled narratives to read.
The issues she worked on are all thoroughly explained in a manner accessible to nondisabled people. The fight for the implementation of section 504 has its complexities and impacts analyzed as do many other values she fought for. Although many impacts and idiosyncrasies of being disabled were not fully explored, every observation and impact is explained at its surface to then be dug into its core importance to the community.
Her participation within the disabled community, especially as demonstrated through her experience at camp and within her advocacy groups, provides an accurate description of the power and bonding within the very diverse community. The basis of disabled culture is founded on widespread acceptance which allows for the diversity within the community to be properly supported by every member despite their differences.
Despite the strength of the community, nondisabled people often ignore the community’s impact on other movements and society. With such ignorance running rampant throughout history, there has never been proper representation for disabled people in any form of media that wasn’t created by other disabled folks. The dilemma spirals into disabled people not being able to access the creations made for them because nondisabled people don’t engage with it to promote it. Disabled people have found other ways to cultivate our culture and nurture each other within the community.
The disabled community is nothing if not resilient and inclusive. With the foundation of an identity being formed by acceptance and diversity, intersectionality is always welcomed, making the community welcoming to all. The safety people find in the community provides the opportunity for them to grow their strength from others, propelling them to advocate for themselves and others within and out of the community. Intersectional connection is displayed appropriately in the depiction of the 504 sit ins, as well as the community’s strength and impact.
The memoir focuses heavily on her experience with the 504 protests and
implementation, and although it does make the pacing uneven, it deserves the extended coverage, especially considering her leadership positions throughout the process. The uneven distribution of her story causes the last section to be much too rushed, but the information and opinions presented are valuable lessons people need to learn nonetheless. The latter section also contrasts the dialect littered with, well deserved, cussing to the expository writing which finds itself to be immature at times.
Although the sentences are occasionally choppy or immature in context, it still encapsulates her experience and the emotions tied to it. It also accomplishes what very few memoirs do, growing with the subject throughout their life. It covers her experiences at a young age with the mature depth that she lacked at the time while still showing her younger self empathy and love. As the writing develops with her, it continues to bring the reader along while still appropriately defining itself to its modern audience of disabled and nondisabled folks.
Disabled life has progressed so far throughout her life, but it has not come far enough. The disabled community is strong and accepting, but it still suffers from the ignorance of nondisabled people. This is just the start, and there are many more disabled narratives to read.
February 9, 2021
This was brilliant and should be required reading globally.
A fascinating story of what growing up was like using a wheelchair before there were curb cuts and ramps and lifts on buses, but even more than that was Heumann's descriptions of the general invisibility of people with disabilities. The fact that she couldn't go to school because she would be a "fire hazard" for the other (presumably more important) children. To have her parents have to sue the school district to get her a regular education. The hurdles she had to go through to become a teacher are galling. The sheer amount of work that was put into passing the ADA is absolutely incredible. I remember reading about the people crawling up the steps of the Capitol Building in Washington DC but I didn't know about the long sit in in San Francisco in the 1970s, and the fact that went on for as long as it did is mind boggling considering what was involved.
This is just an incredible story and it is so unfortunate that the advancements that have been made by people with disabilities and helped along by previous American presidents may just be destroyed by the orange one.
A fascinating story of what growing up was like using a wheelchair before there were curb cuts and ramps and lifts on buses, but even more than that was Heumann's descriptions of the general invisibility of people with disabilities. The fact that she couldn't go to school because she would be a "fire hazard" for the other (presumably more important) children. To have her parents have to sue the school district to get her a regular education. The hurdles she had to go through to become a teacher are galling. The sheer amount of work that was put into passing the ADA is absolutely incredible. I remember reading about the people crawling up the steps of the Capitol Building in Washington DC but I didn't know about the long sit in in San Francisco in the 1970s, and the fact that went on for as long as it did is mind boggling considering what was involved.
This is just an incredible story and it is so unfortunate that the advancements that have been made by people with disabilities and helped along by previous American presidents may just be destroyed by the orange one.
June 10, 2023
I loved this book. As a non-disabled person, I will never understand what it’s like to be in a wheelchair. As the mom of two wheelchair users, I really, really want to understand more. This book helped me to do that. I was fascinated by the stories of Judy’s youth and how people justified the rampant and totally unfair non-inclusion. I’m so grateful to this woman and others like her who paved the way for making things better for people with disabilities. There is still a lot of work to be done. I hope my kids and I can also make things better with people like her as an example.
May 23, 2020
I love this candid memoir. As a person with a disability. Reading it was a shot in the arm, some much-needed motivation.
May 23, 2020
“I never wished I didn’t have a disability.” - Judith Heumann
In "Being Heumann: An Unrepentant Memoir of a Disability Rights Activist," a book Judith Heumann writes with Kristen Joiner, she begins her memoir with the above words and then spends the remainder of the book's 200+ pages living into them.
If you've never heard of Heumann, which sadly and entirely possible, Judith Heumann is an American disability rights activist recognized internationally for her groundbreaking and life-changing work. Featured most recently in the documentary "Crip Camp," Heumann's work began in the 1970's and has included serving governments, non-governmental organizations (NGOs), non-profit organizations, and a number of disability rights organizations.
Having had polio at the age of 18 months, Heumann, who is Jewish, was raised by parents with an acute awareness of the Holocaust. There was simply no way they would have ever considered following the doctor's recommendation that they institutionalize their daughter, instead providing her opportunities to grow, socialize, and learn. It would be the learning that would prove most difficult early on for Judith, whose early childhood came in the years before IDEA and well before ADA was even a thought. The local public school called her a fire hazard and refused her entry to the school, instead she spent three years receiving a mere one hour of home instruction twice a week. By the fourth grade, her mother's voice had grown louder and would demand more for Judith - eventually, she was granted entry into a special school for disabled children where, somewhat ironically, she would end up teaching for a time years later.
The school system also tried to keep her out of high school. That failed. Her childhood years at Camp Jened, the camp featured in "Crip Camp," were among her most treasured childhood memories and it would be her friends at camp who would join her in fueling the burgeoning disability rights movement.
By the time Judith Heumann entered Long Island University to study speech therapy, a choice made because Vocational Rehab wouldn't have funded her to study education since there were no disabled teachers at the time, her activist voice was growing and she began uniting both disabled and non-disabled students to demand ramps, access to dorms, and other accessibility options on campus.
Initially denied a teaching license by the Board of Education in New York City because it was believed she couldn't get her students out in case of a fire (along with other lame excuses), Heumann would end up suing for discrimination. The case just so happened to end up in the hands of the city's first black female judge and, well, you can probably figure out what happened. Judith Heumann became the first wheelchair using teacher in New York City and her work was only getting started.
From co-founding the group Disabled in Action with some of her Camp Jened friends to serving as Deputy Director for Center for Independent Living in California to having central involvement in developing the legislation that would become IDEA, Heumann was rapidly becoming a familiar face and a strong voice in the disability rights movement. However, it would be her leadership within the famous 504 Sit-In, a 28-day peaceful but passionate sit-in at the San Francisco Office of the U.S. Department of Health, Education and Welfare that would turn her into a disability rights icon. Designed to push HEW Secretary Joseph Califano to sign meaningful regulations Section 504 of the Rehabilitation Act of 1973, the event was one of several sit-ins nationwide but by far the largest and most enduring of all of them.
It was also successful.
Judith Heumann has continued to live a life of disability advocacy in roles with World Bank, Department on Disability Services, and she co-founded the World Institute on Disability. She served as Assistant Secretary of the Office of Special Education and Rehabilitation Services in the Clinton Administration and Special Advisor on Disability Rights for the US State Department under President Barack Obama. Following President Trump's election, which she laments greatly in the closing pages of the book because of the rollbacks that have occurred in disability rights, she began serving in a role with the Ford Foundation.
As magnificent a life as Heumann has lived, "Being Heumann: An Unrepentant Memoir of a Disability Rights Activist" is remarkable in its humanity. While she is, in fact, incredibly special as a human being and as an activist, Heumann possesses a perfect weaving together of confidence and humility and often prefaces her greatest achievements with the comment that in the moment she's tremendously confident but often feels anxiety and doubt both before and after such events. It helps us realize that even though our voices may quiver it is most important that we show up and use them anyway.
The early part of "Being Heumann" is fascinating in exploring Heumann's childhood and its impact on the woman that she would become. As an adult with a disability myself, I found myself drawn most to these early sections as she dealt with early discrimination, learned how to live with her disability, learned to adapt, learned how to use her voice, built a community, and became comfortable with her emotional and physical needs. As someone who still gets embarrassed to ever ask for help, I practically wept (Okay, I actually did weep) during the sections where she would work through the embarrassment of her body's more intimate needs and learn how to meet those needs and build a tribe of people who simply cared for one another in a variety of ways.
Nearly 1/3 of "Being Heumann" takes place at the 504 Sit-In. While I've long been familiar with this sit-in, Heumann adds splendid detail to it all including other groups involved, key players, and vivid memories both wonderful and definitely not so wonderful. For example, did you know that at a point went Califano had arranged for the building to be locked so that food could not be brought in that the local Black Panthers forced themselves in and would end up providing food at the sit-in every single day for the rest of the sit-in?
I honestly had no idea.
There are other little tidbits that were surprises to me, but they remain best discovered yourself by reading the book.
It's hard to read a book like "Being Heumann" without becoming more aware of the ways in which I internalize my own ableism. The ways in which I shy away from my own needs, my own voice, my own body, and the ways in which I shame myself or treat myself as an "other." Heumann seemingly understands these feelings, but she pushes through them and it's marvelous.
There were times in "Being Heumann" where I couldn't help but wish she'd expanded the breadth of her stories. For example, her marriage to Jorge at the age of 42 is given relatively little time yet for so many disabled adults the idea of dating or sex or marriage is a foreign concept. I'd have loved to have read more about this relationship.
Additionally, there are times when "Being Heumann" gets a little too bogged down in "this happened...then this happened," rather than truly exploring the actual happenings that unfolded. Having worked in two presidential administrations, both experiences are given very little attention here and that would be fascinating. Likewise, as a woman who acknowledges throughout the book the need for assistance with going to the bathroom and other personal details it would be inspiring to learn more about how that impacted her global journeys.
Details. I wanted more details. The basics, at least for this person who has spina bifida and is a double amputee/paraplegic, are far too surface to ultimately satisfy.
However, these are relatively minor quibbles for a quickly paced, fascinating book written by one of the disability rights movements most fascinating and accomplished individuals. At just over 200 pages, Heumann, along with Kristen Joiner, packs the book with a lot of information both personally and professionally and the book is as much a primer on the disability rights movement as it is a memoir. Powerfully written and, indeed, unrepentant, "Being Heumann: An Unrepentant Memoir of a Disability Rights Activist" is a must-read for everyone.
In "Being Heumann: An Unrepentant Memoir of a Disability Rights Activist," a book Judith Heumann writes with Kristen Joiner, she begins her memoir with the above words and then spends the remainder of the book's 200+ pages living into them.
If you've never heard of Heumann, which sadly and entirely possible, Judith Heumann is an American disability rights activist recognized internationally for her groundbreaking and life-changing work. Featured most recently in the documentary "Crip Camp," Heumann's work began in the 1970's and has included serving governments, non-governmental organizations (NGOs), non-profit organizations, and a number of disability rights organizations.
Having had polio at the age of 18 months, Heumann, who is Jewish, was raised by parents with an acute awareness of the Holocaust. There was simply no way they would have ever considered following the doctor's recommendation that they institutionalize their daughter, instead providing her opportunities to grow, socialize, and learn. It would be the learning that would prove most difficult early on for Judith, whose early childhood came in the years before IDEA and well before ADA was even a thought. The local public school called her a fire hazard and refused her entry to the school, instead she spent three years receiving a mere one hour of home instruction twice a week. By the fourth grade, her mother's voice had grown louder and would demand more for Judith - eventually, she was granted entry into a special school for disabled children where, somewhat ironically, she would end up teaching for a time years later.
The school system also tried to keep her out of high school. That failed. Her childhood years at Camp Jened, the camp featured in "Crip Camp," were among her most treasured childhood memories and it would be her friends at camp who would join her in fueling the burgeoning disability rights movement.
By the time Judith Heumann entered Long Island University to study speech therapy, a choice made because Vocational Rehab wouldn't have funded her to study education since there were no disabled teachers at the time, her activist voice was growing and she began uniting both disabled and non-disabled students to demand ramps, access to dorms, and other accessibility options on campus.
Initially denied a teaching license by the Board of Education in New York City because it was believed she couldn't get her students out in case of a fire (along with other lame excuses), Heumann would end up suing for discrimination. The case just so happened to end up in the hands of the city's first black female judge and, well, you can probably figure out what happened. Judith Heumann became the first wheelchair using teacher in New York City and her work was only getting started.
From co-founding the group Disabled in Action with some of her Camp Jened friends to serving as Deputy Director for Center for Independent Living in California to having central involvement in developing the legislation that would become IDEA, Heumann was rapidly becoming a familiar face and a strong voice in the disability rights movement. However, it would be her leadership within the famous 504 Sit-In, a 28-day peaceful but passionate sit-in at the San Francisco Office of the U.S. Department of Health, Education and Welfare that would turn her into a disability rights icon. Designed to push HEW Secretary Joseph Califano to sign meaningful regulations Section 504 of the Rehabilitation Act of 1973, the event was one of several sit-ins nationwide but by far the largest and most enduring of all of them.
It was also successful.
Judith Heumann has continued to live a life of disability advocacy in roles with World Bank, Department on Disability Services, and she co-founded the World Institute on Disability. She served as Assistant Secretary of the Office of Special Education and Rehabilitation Services in the Clinton Administration and Special Advisor on Disability Rights for the US State Department under President Barack Obama. Following President Trump's election, which she laments greatly in the closing pages of the book because of the rollbacks that have occurred in disability rights, she began serving in a role with the Ford Foundation.
As magnificent a life as Heumann has lived, "Being Heumann: An Unrepentant Memoir of a Disability Rights Activist" is remarkable in its humanity. While she is, in fact, incredibly special as a human being and as an activist, Heumann possesses a perfect weaving together of confidence and humility and often prefaces her greatest achievements with the comment that in the moment she's tremendously confident but often feels anxiety and doubt both before and after such events. It helps us realize that even though our voices may quiver it is most important that we show up and use them anyway.
The early part of "Being Heumann" is fascinating in exploring Heumann's childhood and its impact on the woman that she would become. As an adult with a disability myself, I found myself drawn most to these early sections as she dealt with early discrimination, learned how to live with her disability, learned to adapt, learned how to use her voice, built a community, and became comfortable with her emotional and physical needs. As someone who still gets embarrassed to ever ask for help, I practically wept (Okay, I actually did weep) during the sections where she would work through the embarrassment of her body's more intimate needs and learn how to meet those needs and build a tribe of people who simply cared for one another in a variety of ways.
Nearly 1/3 of "Being Heumann" takes place at the 504 Sit-In. While I've long been familiar with this sit-in, Heumann adds splendid detail to it all including other groups involved, key players, and vivid memories both wonderful and definitely not so wonderful. For example, did you know that at a point went Califano had arranged for the building to be locked so that food could not be brought in that the local Black Panthers forced themselves in and would end up providing food at the sit-in every single day for the rest of the sit-in?
I honestly had no idea.
There are other little tidbits that were surprises to me, but they remain best discovered yourself by reading the book.
It's hard to read a book like "Being Heumann" without becoming more aware of the ways in which I internalize my own ableism. The ways in which I shy away from my own needs, my own voice, my own body, and the ways in which I shame myself or treat myself as an "other." Heumann seemingly understands these feelings, but she pushes through them and it's marvelous.
There were times in "Being Heumann" where I couldn't help but wish she'd expanded the breadth of her stories. For example, her marriage to Jorge at the age of 42 is given relatively little time yet for so many disabled adults the idea of dating or sex or marriage is a foreign concept. I'd have loved to have read more about this relationship.
Additionally, there are times when "Being Heumann" gets a little too bogged down in "this happened...then this happened," rather than truly exploring the actual happenings that unfolded. Having worked in two presidential administrations, both experiences are given very little attention here and that would be fascinating. Likewise, as a woman who acknowledges throughout the book the need for assistance with going to the bathroom and other personal details it would be inspiring to learn more about how that impacted her global journeys.
Details. I wanted more details. The basics, at least for this person who has spina bifida and is a double amputee/paraplegic, are far too surface to ultimately satisfy.
However, these are relatively minor quibbles for a quickly paced, fascinating book written by one of the disability rights movements most fascinating and accomplished individuals. At just over 200 pages, Heumann, along with Kristen Joiner, packs the book with a lot of information both personally and professionally and the book is as much a primer on the disability rights movement as it is a memoir. Powerfully written and, indeed, unrepentant, "Being Heumann: An Unrepentant Memoir of a Disability Rights Activist" is a must-read for everyone.
May 11, 2022
Interesting and educational "why isn't there anything about THIS in US textbooks?" read (or listen, in this case), though I actually agree with another reviewer who felt the book should be longer. The sections about her childhood and the San Francisco sit-in to get Section 504 regulations signed and passed are super detailed but then everything that comes after that (her time at the World Bank and in the Clinton and Obama adminstrations etc.) feels shortened and rushed, so I would have appreciated more info there...maybe there's a sequel coming. :-) Also thought the narrator choice was pretty good, though perhaps lacked a certain gravitas here and there for an author who's now in her 70s...
June 28, 2021
I'm sure I'll write a longer review when I'm not on my phone. But this was an important, beautiful book that went straight to my soul. Because although I grew up in a different country, with a different disability, and in a different generation, I felt this. I have been excluded. I have been told by others what I should and shouldn't hope to achieve, purely because I'm disabled. And I've had to fight. I needed to read this book, and I hope that it brings you the same mix of joy and overwhelming emotion that it gave to me.
May 31, 2020
I adored this book. I can’t recommend it enough! I wish it were required reading for Americans. Judy Heumann is phenomenal. What an impressive human! The book was a quick read covering a lot of ground across the disability rights movement of the past 7 decades from a very compelling voice/author. The thing that struck me more than even her incredible strength in the face of the constant, flagrant discrimination in our society was the way she built and leaned on communities to create power and fuel herself and movements to fight injustice.
So many books I’ve read by social justice advocates have a thread of loneliness in them because of how lonely it can be to fight these battles daily. But rather than an undercurrent of loneliness, Judy’s secret sauce was an undercurrent of community which I found very thought provoking of how I could emulate her approach more and use community building to fight both loneliness and injustice more effectively at the same time.
I also enjoyed the focus of the book being on the achievements and victories (though few and far between as they were). It made it a very enjoyable and uplifting book to read even though the injustice she describes is palpable, upsetting, and continuing today.
Also, I have not found too many books/memoirs by disability advocates and I’m really craving them to empathize more with their experiences and identify and unlearn the ableist biases I still hold, and this was a perfect one. I just want many more! If you know of great ones, please share!
So many books I’ve read by social justice advocates have a thread of loneliness in them because of how lonely it can be to fight these battles daily. But rather than an undercurrent of loneliness, Judy’s secret sauce was an undercurrent of community which I found very thought provoking of how I could emulate her approach more and use community building to fight both loneliness and injustice more effectively at the same time.
I also enjoyed the focus of the book being on the achievements and victories (though few and far between as they were). It made it a very enjoyable and uplifting book to read even though the injustice she describes is palpable, upsetting, and continuing today.
Also, I have not found too many books/memoirs by disability advocates and I’m really craving them to empathize more with their experiences and identify and unlearn the ableist biases I still hold, and this was a perfect one. I just want many more! If you know of great ones, please share!
August 9, 2022
Judith Heumann is just…wow.
30 pages in I was already reflecting on how much she had done for the disability rights movement and that was before her big win with the 504.
I think my biggest takeaway was the shock of never hearing about someone who helped fight for rights for so many people. Which in so many ways illustrates the point…people with disabilities have often been hidden from view, but they deserve equality.
An amazing human rights activist, a great read.
30 pages in I was already reflecting on how much she had done for the disability rights movement and that was before her big win with the 504.
I think my biggest takeaway was the shock of never hearing about someone who helped fight for rights for so many people. Which in so many ways illustrates the point…people with disabilities have often been hidden from view, but they deserve equality.
An amazing human rights activist, a great read.
May 26, 2020
I was introduced to Judy Heumann after watching the documentary Crip Camp on Netflix and when I found out she wrote a memoir I just had to read it. Would really recommend this to anyone interested in the disability rights movement.
July 7, 2023
A great memoir from a polio survivor who was paralyzed at 18 months old and who grew up to become one of America's best disability rights activists. Judith served under multiple presidents and helped progress disability rights legislation across the United States. An incredible life by an incredible woman. Highly recommended, especially for fans of Alice Wong or Tammy Duckworth.
January 23, 2024
I couldn't put this down. Heumann's life is fascinating and I enjoyed learning about her and from her. I learned so much from this book.
May 12, 2021
Everyone needs to read this book!
March 9, 2024
I’m well familiar with much of the stories in this book, but it was so nice to read more about Judy specifically. Her tone is both humble and not at the same time, which I appreciated. Her message of community action as a group effort always honors those who fought alongside her, and I hope current and future generations take note. We are stronger together, and we are all better off because of Judy’s tremendous unwillingness to back down. Thank you, Judy. Rest in Power!
February 17, 2023
Wow. What a woman! I first heard of Judy Heumann after watching the documentary Crip Camp all about the disability rights movement. I LOVED this documentary and recently learned that Judy had written a memoir. Say LESS!
"When other people see you as a third-class citizen, the first thing you need is a belief in yourself and the knowledge that you have rights. The next thing you need is a group of friends to fight back with."
"Who gets to decide who is worthy of life?"
"Disability is seen as a burden, a tragedy. But what if it wasn’t? What if someone’s story began with the words: “I never wished I didn’t have a disability" We are all human. Why do we see disability differently from any other aspect of being human?"
As a wanna-be disability activist myself, I am honored to read about the story of the faces behind the 504 sit-ins and the advocacy for IDEA and ADA. These policies that only became legislation
!!!less than 50 years ago!!!! are the only reason that those with disabilities have rights in our country. It was beautiful to hear Huemann's story of the grit, fierceness, and strength it took to rewrite the narrative of disability in our country. I am blown away by her selflessness, her tenacity, and her story. I hope to advocate for those with disabilities with even a fraction of the drive that she has!!!
"Part of the problem is that we tend to think that equality is about treating everyone the same, when it’s not. It’s about fairness. It’s about equity of access. And equity of access, whether to housing, health, education, or employment, looks different for someone like me and the hundreds of thousands of us who cannot do things the same way, than it does for the majority of people who can. It involves ramps, wider doorways, bars, sign language interpreters, captioning, accessible technology, audio descriptions, documents in Braille, and personal assistance for those with physical disabilities, as well as those with intellectual disabilities"
"When other people see you as a third-class citizen, the first thing you need is a belief in yourself and the knowledge that you have rights. The next thing you need is a group of friends to fight back with."
"Who gets to decide who is worthy of life?"
"Disability is seen as a burden, a tragedy. But what if it wasn’t? What if someone’s story began with the words: “I never wished I didn’t have a disability" We are all human. Why do we see disability differently from any other aspect of being human?"
As a wanna-be disability activist myself, I am honored to read about the story of the faces behind the 504 sit-ins and the advocacy for IDEA and ADA. These policies that only became legislation
!!!less than 50 years ago!!!! are the only reason that those with disabilities have rights in our country. It was beautiful to hear Huemann's story of the grit, fierceness, and strength it took to rewrite the narrative of disability in our country. I am blown away by her selflessness, her tenacity, and her story. I hope to advocate for those with disabilities with even a fraction of the drive that she has!!!
"Part of the problem is that we tend to think that equality is about treating everyone the same, when it’s not. It’s about fairness. It’s about equity of access. And equity of access, whether to housing, health, education, or employment, looks different for someone like me and the hundreds of thousands of us who cannot do things the same way, than it does for the majority of people who can. It involves ramps, wider doorways, bars, sign language interpreters, captioning, accessible technology, audio descriptions, documents in Braille, and personal assistance for those with physical disabilities, as well as those with intellectual disabilities"
July 16, 2023
4.5/5
Incredibly informative. This was eye opening to how the ADA came to be in the USA. I learned a lot from this. I will say it is incredibly white and heteronormative, so keep that in mind and seek out additional disabled voices to fill those gaps.
Most shocking things for me: how curb cuts were not a thing before the ADA! What!? And that Nazi's started their genocide with disabled children and babies. fucked up.
Really keen to read A Disability History of the United States now!
The author is quadriplegic and a wheelchair user resulting from childhood polio.
CWs: Ableism, discrimination, body shaming, chronic illness, sexism, medical content, bullying, antisemitism, mentions of Nazis and Nazi Germany, genocide, death, misogyny.
Incredibly informative. This was eye opening to how the ADA came to be in the USA. I learned a lot from this. I will say it is incredibly white and heteronormative, so keep that in mind and seek out additional disabled voices to fill those gaps.
Most shocking things for me: how curb cuts were not a thing before the ADA! What!? And that Nazi's started their genocide with disabled children and babies. fucked up.
Really keen to read A Disability History of the United States now!
The author is quadriplegic and a wheelchair user resulting from childhood polio.
CWs: Ableism, discrimination, body shaming, chronic illness, sexism, medical content, bullying, antisemitism, mentions of Nazis and Nazi Germany, genocide, death, misogyny.
March 15, 2020
I really enjoyed the fact that I can relate to so much of what the author was talking about in this book. She gives a really great backstory to the signing of the Americans with disabilities act. This is a must read!
March 8, 2023
“Change never happens at the pace we think it should. It happens over years of people joining together, strategizing, sharing, and pulling all the levers they possibly can. Gradually, excruciatingly slowly, things start to happen, and then suddenly, seemingly out of the blue, something will tip.”
It feels weird to rate anything memoir or biography related less than 5 stars when the story it tells is worth hearing, particularly when it relates to civil rights movements, so I’d like to stress that my rating is based solely on my feel of this as a book, and not on the worth of Judith Heumann’s life story, or that of her invaluable efforts to champion disability rights.
Being Heumann mostly focuses on the 1977 protests, spearheaded by Heumann herself, that led to the creation of the Americans with Disabilities Act. It’s an almost minute by minute detailing of what happened and the emotions that swelled at the time, what was at stake for everyone involved.
I cannot overstress how inspiring this woman’s background is, from the fact that she is the daughter of Jewish Polish immigrants fleeing Nazi Germany to her trajectory as a disability rights activist. In that sense, Being Heumann is an incredibly empowering tale, and certainly Judith Heumann is a force to be reckoned with: history is built on the shoulders of titans like her.
That said, I do believe this book will fare better with people particularly interested in the history of American politics. I think perhaps I was hoping for something more essay/think-piece oriented, which is why I ended up finding the chapters on her early years much more interesting than the ones about the 504 Sit-in. I’d also like to stress that I’m European, so though I appreciate the importance and impact the trajectory of civil rights in the US had, there’s only so much I can invest myself in the very detailed minutiae of how events unfolded.
And yet, though I didn’t find the text as fertile as I had hoped (again: purely as a book, not as a historical event), I still firmly believe this is an essential read for anyone claiming to fight for equality: no matter how you frame it, Judith Heumann’s story is one of resilience and strength. It’s wild to cast a look back and realise that certain accessibility infrastructure that I consider to be an obvious part of any building (in Europe) wasn’t part of life 50 years ago... and we still have so much work to do as a society to lift the stigma against disability.
If there is anything this memoire has taught me, it’s that the fight for equality is never ending: we have to carry the torches lit by the people before us. I read this book some months ago and have been sitting on this review, only to find out some days ago that Judith Heumann has sadly passed away, still young at 75... Her legacy is truly immeasurable, and it’s our turn now to continue laying down blocks in her fight for change right where she left off. Rest in peace.
June 27, 2020
Now that I've joined my work book group in addition to my college book group, it's kind of weird that the first two books I finished for it have both inspired me to think first about the packaging before the book. With Trust Exercise: A Novel, I actually kind of appreciated the packaging for revealing just enough about the book to keep me reading through the weaker first half. In this book's case, the packaging had a more negative effect on me - I knew it was the memoir of an activist, but when two of the top three blurbs in the packaging were from Hillary Clinton and Sheryl Sandberg, it kind of biased me against the book. And indeed, the most interesting section of this memoir for me by far was the middle section, which focuses, with plenty of detail, on a single major act of civil disobedience that eventually succeeded in achieving its goal. The first and third sections cover a lot more ground with less detail, and, although they also include descriptions of protests and activist actions, they also are much more centered on work within the political system than the middle section. Now, to be fair, while I assume I do have significant political disagreements with Heumann, the work she describes in the book, and not just the civil disobedience but all of it, seems to have been genuinely significant and laudable. I'm sure that she personally has played a major role in improving the lives of many people who are important to me. So in talking about the sections of the book and my reaction to them, I am consciously musing on and revealing my own biases - that it's just instinctively easier for me to read about radical action than about actions taken within the current national or global political systems of power. Feel free to judge me as you will for this!
Obligatory Archer's Goon reference: It's probably all because there's no one as attractive as Torquil or as cunning as Erskine in power in the real world.
Obligatory Archer's Goon reference: It's probably all because there's no one as attractive as Torquil or as cunning as Erskine in power in the real world.
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