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Tzipora
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August 14, 2020
3.5 very conflicted stars.
Judith Heumann has lived an impressive and profoundly influential life. Unfortunately, this book itself is less than amazing. I seem to disagree with the majority but stick with me. I am not rating Judith or her life or achievements. I am rating the book. And for that, once we got past her childhood I really began to struggle to get through what’s ultimately a rather short book. Oddly, saying that I struggled through- I actually think I may have liked it more had it been longer.
Let’s summarize some of the incredible things Judith was involved with. Paralyzed by Polio at 18 months, in early childhood she was not allowed to attend school. Her parents wanted better for her and fought and fought, eventually finding a school for disabled kids though the education was horrible. Later Judith goes to college and wants to be a teacher, she had often taken on the role of teaching and helping the other students in her class. But her use of a wheelchair is used as an excuse not to hire her. She fights this. This is the start of her incredible advocacy work, fueled in part by the earlier advocacy of her mother. Judith played an integral role in finally getting Section 504 of the Rehabilitation Act passed. She was one of the leaders of the 24 day sit-in protest in San Fransisco and its an incredible story. This eventually lead to the Americans with Disabilities Act being passed, again something she had some involvement with. She helped form or lead a number of important disability related advocacy orgs. She eventually worked under Bill Clinton’s White House as assistant secretary in the Office of Special Education and Rehabilitative Services in the Department of Education.
There’s a lot of disability history here and a lot of talk about disability discrimination and human and civil rights. Personally, I already knew much of this history as a disabled political junkie. I did like hearing some of the details about how entwined the early Disability Rights movement was with the Civil Rights movement. When they were not allowing food into the building during the 504 protest, a group of Black Panther party members breaks in and brings hot meals for everyone. There’s a lot of other really awesome collaboration and I wish this was discussed and taught about more.
However...
I was baffled for awhile on just why I was struggling to read this because I so deeply long for more stories like Judy’s, stories about people like me and stories that begin to show me what kinds of things I could be capable of (or not. Having a progressive illness brings a radically different set of limitations and issues to those faced by someone like Judith who was paralyzed by Polio and therefore has a much more stable day to day). I feel a special kinship too when I read stories of people who are marginalized in more than one way like I am so her Jewishness was special to me as well. And what Judith Heumann has done with her life and the role she’s played in Disability history and the US and even international Disability Rights movement is so important.
But I think that’s the issue. This is far too heavy on the facts. The blow by blow and all the names of the 504 sit-in actually took something away from the story. And other parts were fine enough but by far the parts that interested me most were just her own thoughts and feelings. I wanted more of Judith’s story as only she could tell it. In many ways this reads a lot like a biography, something someone else has written about her. I know she worked with someone else whose name is on the book also but still, I wish we had gotten more personal. Who Judith is as a person is just as important as the things she’s done. I find it hard to care about the later without the former. And I say that as a disabled person who’s benefited from her work.
While nondisabled folks or disabled folks who aren’t as aware of disability history may learn a lot here, I suspect they’d have the same issue. I mean this isn’t a story about disability history. It’s about Judith, first and foremost m- or at least the title and focus on her would make you think that- and the specific role she’s played. I found it hard to care enough about her as much as I wanted to. There’s the tiniest little section about the man she married who is also disabled and she talks more about their accessibility needs or the language barrier (her husband is Mexican) than anything. I don’t need to know all their business but gosh, as a disabled person, if it’s rare we get to see disabled folks represented and making a real difference in the world (as opposed to being “inspiration porn” aka when disabled people are praised for just existing and doing basic things or used as a “If she could get out of bed today, so can you”), we never hear disabled love stories and relationships. Hell, disabled people still to this day do not have marriage equality. I will lose my benefits and insurance if I marry. So I just wanted more. Sure she throws in a few stories about ableism she’s faced and we hear some about how she grew up but it’s too much fact, not enough feeling. Being Heumann lacks a certain level of humanity, ironically enough.
I also want to add in here quickly- when it comes to facts as well, I noticed some number related errors that I’m surprised wasn’t caught during the editing process. When she discusses the number of people involved in the Sam Fransisco 504 sit-in she says there’s 135. Then a page or two later she says 125. And says 125 again. Then suddenly it’s 150. Similarly at another point in the book she mentions being 27. She’s asked to move to California at 27. Yet describes the months after and then literally states “a year and a half later” and ends with saying she was 27. I’m not a math person and these stood out to me. I figured it was worth mentioning though I don’t think it’s a major issue. Except that I firmly believe this book deserved a better editor or another pass or two through the editing process.
I find it difficult to rate this book. Let’s call this 3.5 very conflicted stars. But I hate how often memoirs or even fiction about illness or cancer or trauma or the Holocaust or similar get automatic praise from people over the subject. Important subject here. Subpar, if not downright disappointing book. I hesitate to recommend it. I want everyone to learn about Judith Heumann and disability history and you can gain some of that from this book. Yet there’s got to be better options out there. Or there should be. And if you, like me, are a disabled woman looking for more stories of disabled women and disabled women to look up to, well, this probably isn’t the book for you. Though I’m sort of tempted to say read it anyway. I’m very torn. You could gain everything you gain from reading this book by simply researching the history of disability rights in America. And maybe many liked the book because they didn’t know these things. Or because reading stories like this and frankly, disabled people having opportunities like this are so rare. But I don’t think it’s a particularly good memoir at all. This is why we need more disabled stories, Damn it. This is why we need more notable disabled people, to allow people like me to live our dreams and do big things. I don’t want this to be good enough. It’s not. Judith is a fascinating person. Her book, not so much.
I guess read it to learn- in a somewhat dry way- about the facts of what Judith lived through and was involved in when it comes to the evolution of the Disability Rights Movement. But don’t go in expecting so much of a memoir. Personally, I wanted the memoir. Because there are other “just the facts please” books and spaces to learn about the Disability Rights movement. That’s important. But I refuse to say this book is the book to read or even really a particularly good book. I hope that makes sense.
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Maria Seno
7 reviews
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July 25, 2020
I don’t think I have the words to do this book justice, but I’ll try.
If you have seen the Netflix documentary “Crip Camp” you will recognize some things when you read this book. If you intend to read the book, it may actually be better to read it before watching the documentary, which is not what I did.
This book brought up a lot of emotions for me because I can relate to it. I can relate to the feeling of invisibility that living with a disability causes, and I can relate to the frustration about living in an inaccessible society. It meant a lot to me to read the author’s insights about her personal experiences living with a disability and society’s lack of understanding or acceptance, but also to know that we as people with disabilities can still fight for proper treatment.
I think it’s really important for non-disabled people to read this book, too. The Americans with Disabilities Act was signed by the time I was in second grade, so I didn’t experience all that the author did, but it didn’t solve everything. The law only asks for “reasonable accommodations,” which can mean many different things. Sometimes it means the bare minimum. Older buildings don’t have to comply with the ADA at all, or they can get by with the minimum. One grab bar in an otherwise tiny bathroom that’s too small for a wheelchair to turn around. A separate “wheelchair accessible” door into a building that’s around the back by the dumpster.
Even in the USA in 2020, with all the progress that has been made toward disability rights thanks to the activism of Ms. Heumann and others, people with disabilities are still stigmatized, either with pity or inspiration, and we will continue to be until society is made more accessible so that we can become more visible. We are still seen as less important than other people, an inconvenience, a liability. The laws in place help, but they aren’t enough. Laws don’t make society treat us as normal human beings.
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Abby Johnson
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December 23, 2019
This incredible memoir paints a picture of what life was like for people with disabilities before section 504 and the Americans with Disabilities Act were passed and the incredible struggle to get them passed. Judith Heumann got her start in activism accidentally when she was forced to sue the New York Board of Education for denying her a teaching license due to her physical disability. After fighting for herself, she never stopped fighting for her rights and the rights of people with disabilities in this country and the world.
With the 30th anniversary of the passing of the Americans with Disabilities Act (which brought about changes such as curb cuts and accessible city buses) coming up in July 2020, this is the perfect time to delve into the life of an influential disability rights activist.
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Karen
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March 9, 2020
An impressive person and an interesting history lesson, but I'm not sure how I feel about the book itself. Like many books about accomplished leaders, it sort of reads as "then I did this, and then I did this, and then I was just leading everything" without that much sense of what's going on in the person's head or how how they became the sort of leader and activist they did. In this case, she tries, but it's just a short book. Also, the pacing and focus was uneven. The first third read like a biography, telling us about her childhood and education. The middle third described in detail one particular protest, and the last third whizzed through the rest of her career.
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