Being Heumann: An Unrepentant Memoir of a Disability Rights Activist by Judith Heumann

Being Heumann: An Unrepentant Memoir of a Disability Rights Activist Reviews

• 
  Tzipora

  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.
• 
  Maria Seno

  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.
• 
  Abby Johnson

  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.
• 
  Karen

  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.
• 
  Lisa

  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.
• 
  Georgia Scott

  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.
  
• 
  Richard Propes

  “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.
  
  
• 
  Patty

  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.
• 
  Jennifer

  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...
• 
  Wouter

  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.
• 
  Maryam

  Everyone needs to read this book!
• 
  Lindsey

  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.
• 
  Chelsea

  ⭐️⭐️⭐️⭐️⭐️
  
  Finally finished this book today!!
  And wowee wow.
  I’m so thankful Judith chose to tell her story and the stories of so many others her life has crossed paths with.
  
  Her efforts towards and fights for disability equality, equity, justice, inclusion, acceptance and belonging are something I’m so thankful I can count as part of my history.
  
  I wish I had the financial stability to buy this book in bulk and start distributing it to any friends who tell me they’d read it.
  
  I related to and was familiar with a lot of the feelings and experiences that Judith herself had throughout her lifetime and in that way this book felt like a best friend.
  
  Yet I am thankful for the things she taught me within the pages that I didn’t have a complete understanding of.
  
  I also appreciated that this is not only a physical copy of Judith’s story written in her own words and from her perspective, but that Ali Stroker (Tony Award winning actress who uses a wheelchair) narrated the audiobook companion for it. Hiring disabled people to tell and portray disabled stories is a huge thing that gets discussed amongst disability advocates and to see it happen like this is no small thing.
  
  RUN DO NOT WALK (or Amazon Prime it to get it in like 2 days tops!) or start haul-assing at top speeds in your manual or power chairs to get yourself a copy of this one if you care to learn more about disability rights, history, inclusion, advocacy, and policy making.
  
  This book is a must read if my life experiences and those aforementioned things are important to you.
• 
  Fern Adams

  
  Judy Heumann is one of my hero’s. I am in complete awe of her and what she has achieved. While I’m not an American, the work she did to fight for change and accessibility had ripple effects here too and so I’m incredibly grateful. This book is part memoir, part history, telling the story of the fight for equality and basic civil rights for disabled people. What Judy did with others was incredibly important work that helped map out the way ahead. While we still have a long long way to go towards equality and fully being able to achieve the ideas behind the independent living moment the steps were laid and what this book explores was the pioneering first steps.
  I feel in many ways this is a book aimed at able bodied people who may not be aware of the history or even how exclusionary society is and have never considered what happens if you can’t get inside a school or a bus or what discrimination might take place. However it’s interesting for everyone to have a read of and Judy is one amazing human!
• 
  Honey

  Well that was a breath of fresh air. I finish this book feeling inspired, and wanting to learn more about and from people, particularly women, who have fought for a chance at equality and spearheaded movements that can actually change the world.
  
  Judith Heumann and her peers have really shone a light on the need for accessibility and civil/human rights for the disabled. I think one thing that I've taken away is how we (continue to) view and portray people w/ disabilities. For example, can a film about someone disabled just be a film about a person doing normal things without focusing on their crippled state? Can we honestly look at someone in a wheelchair and think they have it as easy as those who are not? In a way, the book opens up discussions on how society still has a lot to learn about how we tackle this.
• 
  Barbara

  Judith Heumann is a hero. She is the same age as me but while I happily went to kindergarten and elementary school, she was denied that right because polio had left her with physical disabilities. She went on to become one of the most influential and effective individuals in the disability rights movement, including the right to a good education. I went on to become a teacher in the area of special education and saw the results of her hard work and perseverance. Reading this memoir filled in a lot of blanks and reminded me of things I once knew but had forgotten. It will document for others the hard fought path to the rights that some take for granted today.
• 
  Jane LaFazio

  This was a book club choice, and One Book, One San Diego selection. With the experience of my husband's brain injury (in 1992), with our involvement with the San Diego Brain Injury Foundation for many, many years, and my husband's recent use of a walker and need for ADA access, I thought I knew about people with disabilities. Reading this book, I realized how clueless I was! It was only 1990, that the Americans with Disabilities act was signed and how difficult, if not impossible, access was for people in wheelchairs or crutches.
  Rated 4 because of how the book has educated me.
• 
  Libby

  I’d give this a 4+. The writing is a bit dry, but the content, story, and woman herself are so amazing I forgive the okay writing. Great book about recent history on disability rights and activism in the US.
• 
  Ashley

  Ms. Heumann is such a great writer, activist, and feminist. I loved her informative and confident voice. She's an inspiration to all. This book will educate those who are not old enough to remember life without wheelchair ramps. I was floored to learn how recent the American Disabilities Act was passed. Her story should be mandatory reading and if you don't know her, you should.
• 
  Justin Hodges

  Very good. I had never really heard about the disability rights movement and this gave great insights into it.
• 
  Taylor

  She's our disability badass hero. 💯
• 
  Michelle Jones

  This is the civil rights movement you likely never learned about in school. The story is compelling and immersive, with larger-than-life characters pushing through to victory. This book is important, enlightening, and enjoyable, and I’d recommend it to anyone.
• 
  Shirley

  Highly recommended read - opens awareness of the history of disability activism. Judith Heumann was very charismatic but I also liked her frankness and being open to emotions of vulnerability on her journey to fight for civil rights for the disabled community.