No Pity: People with Disabilities Forging a New Civil Rights Movement

by Joseph P. Shapiro

“A sensitive look at the social and political barriers that deny disabled people their most basic civil rights.”— The Washington Post

“The primer for a revolution.”— The Chicago Tribune

“Nondisabled Americans do not understand disabled ones. This book attempts to explain, to nondisabled people as well as to many disabled ones, how the world and self-perceptions of disabled people are changing. It looks at the rise of what is called the disability rights movement—the new thinking by disabled people that there is no pity or tragedy in disability and that it is society’s myths, fears, and stereotypes that most make being disabled difficult.” —from the Introduction

Genres: Disability, Nonfiction, Disability Studies, History, Politics, Social Justice, Activism

400 pages, Paperback

First published January 1, 1993

About the author

Joseph P. Shapiro is a science journalist, currently an NPR correspondent.

Reviews

[Lightreads · Rating 4 out of 5]

Hrm. Two not entirely compatible responses here. On the one hand, I want to tell everyone to read this book, because seriously, everyone should read this book. The history of the disability movement is essentially invisible to most Americans, and that's a shame on multiple levels. This book is extremely successful as historical account, from the first stirrings of community consciousness at Berkeley to the sputtering of civil disobedience, the twenty-five day takeover of the San Francisco Federal Building (orchestrated by a friend and mentor of mine, by the way), the Gallaudet student . . . revolt is the best word, the deinstitutionalization movement. You want drama, you want romance, it's all here, and most people have no idea.

However. This book was written by an able-bodied reporter, and, well, it shows. The author devoted years to it, and became a strong community ally, mind you, but this book is pitched at the average able-bodied American to educate on disability issues. So it ducks a lot of complication, and a lot of the nuance of disability experience is compressed into sound bites. See the section on the deaf community's splintered reaction to childhood implantation of cochlear implants for example – the capsule summary of 'we can cure you at birth!' versus 'you kill my culture!' is essentialist and a bit thin.

So this book is extremely valuable as a survey introduction, and an exercise in consciousness raising. And for that alone, I praise it. But its utility is limited. An excellent place to start and a terrible place to stop, is what I'm saying. Just looking down the reviews on the Goodreads page makes that abundantly clear.

[Moira-ji]

I want to comment on the author's continued use of the term "attendant" even after he wrote that the preferred term was "personal assistant". He acknowledged what the preferred term was and then completely ignored it. He did the same basic thing with the terms "retarded" and "retardation".

The author also repeatedly described disability rights advocates and the movement itself as "militant". Inigo Montoya's famous quote came to mind: "You keep using that word. I do not think it means what you think it means."

The author's lack of understanding in the cochlear implant debate was disturbing, especially since it did not seem that the author had cared to investigate the issue much at all. The author's presentation of autism was nothing more than a quick gloss on commonly accepted views at that time, and therefore full of glibly stated misconceptions.

It is worth notice that this is in a book (which was written in the early 90s, to be sure) supposedly championing the disability rights movement. The book itself covers a very important moment in civil rights history that honestly deserves a much better treatment than the abled journalism here.

[Kate♡ · Rating 4 out of 5]

3.75/5stars

another book for my disability studies essay!

[oaktreereads · Rating 2 out of 5]

(disclaimer that this is just a rant, i haven't read the full book, I am aware this is from the 1990s but god there was still antiracist anticapitalist radical disability politics in the 90's! sir what were you doing. also yeah this contains discussion of ableism and racism)

oh my god it's so bad. sorry. full disclosure that I was only assigned a chapter to read of this for a class but god it made me so viscerally uncomfortable. it's like skating over a thin layer of ice with like toxic water underneath, i would just sort if be skimming but the second i would think about literally any of his points further i got this awful pit in my stomach. like other reviewers have said, he treats the civil rights movement as this completely other thing that was just kind of incidental and luckily was able to help white disabled people (geninuely do not think this man knows that Black disabled ppl exist) and then did you know actually?? the real heroes of disability justice are the most pro capitalist Reaganite/Bush republicans you have ever seen? and it's actually all able to happen because there is a secret society of republicans who have close friends or children or parents who ae disabled, and the actual disabled activists are just consistently labelled as being too angry? angry and loud were literally the words he used, not discussing like the power of direct action or anything, basically fully implying that other disabled people who were able to make laws and go through the system to make change were the good disabled people, even though he literally starts the chapter by saying it's impossible for disabled people to get jobs (and jobs are the Most Important thing so they can prove that disabled ppl aren't like lazy and need welfare and support? it's such a mindfuck) so like which one is it John? overall in the small section of time I had to spend with this man it was awful, thank you for your time.

[Cassio · Rating 5 out of 5]

Joseph Shapiro's book is intense at times and wide in breadth but it is the seminal, fundamental work on disability rights. Written as part history, part weaving personal stories of people he encountered while reporting on this story, Joseph Shapiro tells the stories of several groups of people: from experts turned activists, to blind people, to the people that invented Quickies, and most surprisingly the everyday americans that didn't think of themselves as disabled before they were helped by the anti-discrimination provisions of the ÅDA.

It gave me a greater appreciation of my own rights as a disabled people, of the people who came before me, some of whom roughed it out with my condition in much more discriminatory times.

The fight is not yet over, and I have a newly appreciated fight in me for the battles yet to come.

[Julie · Rating 4 out of 5]

Required reading for my Disabilities class. I am working on a BA of Human Services degree. I learned that the biggest barriers that people with disabilities face are societal ones that are unfounded. Indeed, our society tends to underestimate what people with disabilities are capable of, treat them as less worthy, and view them as helpless dependents. This book challenges society to view people with disabilities as capable, independent and equal. Indeed, I agree that each person has a unique perspective from their individual life experience and it is equally valuable. Finally, I believe that we can all learn from each other and work together to create a more diverse and inclusive world to live in.

[Christian · Rating 5 out of 5]

I am amazed that this book exists! Reading it a few years ago summed up all of the confused and misplaced feelings of aggression and perplexity that had surrounded my experience as a disabled person. My inner advocate wishes that this was required reading for everyone on the planet. It's tone is direct and clear without being overly preachy or in any way anti-ablebodied. This is an advocacy book that says "here's my experience" rather than attacking yours. Please read it and pass it along.

[Sam · Rating 3 out of 5]

This book serves as the first true cultural history of the disability rights movement. Shapiro acts partially as a journalist, historian, and an activist in communicating the ideas and ideologies of the rights movement. In doing so, he provides rich examples of the issues that people with disabilities face, mostly promulgated by terrible legal doctrine combined with an American populace frighteningly unaware of the plight of the disability population.

[Britni · Rating 4 out of 5]

I had to read this book for a class I took and it was engaging. There is so much we as society have forgotten about how we treated people that were in any way different. Its rather astonishing to me that we were so quick to alienate anyone who didn't meet our "perfect" criteria.

[Wealhtheow]

"this book is extremely valuable as a survey introduction, and an exercise in consciousness raising. And for that alone, I praise it. But its utility is limited. An excellent place to start and a terrible place to stop, is what I'm saying."--Lightreads

[Tanya Roberts · Rating 5 out of 5]

it is not often a school assigned book can enrich and enlighten your entire life. This is a great brief on a variety of movements regarding rights for the disabled and is sure to cause anyone to seriously reflect on their own assumptions and attitudes.

[Brianna · Rating 3 out of 5]

I am reading it for a Master's level Multi-cultural class at UNLV.

[Allen3459]

The story of an underground struggle

[Stuart · Rating 5 out of 5]

A must read on disability identity and pride.

[Carol Liu · Rating 5 out of 5]

Required reading for all us TABs hoping to help friends living with a disability.

[Michael Thornton · Rating 5 out of 5]

Re-read this great book about the disability advocacy movement and realize that though we have come a long way... there's still a whole lot more to do! #DIANOW Disability Rights ARE Civil Rights!

[Cynthia · Rating 2 out of 5]

Out dated.

[Max Murphy · Rating 5 out of 5]

I went into this book thinking that I was exploring a new world of disability- after falling ill earlier this year. What I realized was that I had been disabled for a while, albeit in a different way. My problems with depression and anxiety had created barriers to success that I had just accepted as a natural consequence of mental illness. But this book talks about how most people who need disability rights might not even view themselves as disabled.

A cop with diabetes gets denied his pension because he takes insulin shots. A student with ADHD fails their tests, not because they don't know the information but because of the overstimulating exam room. In my case, a student with depression is expected to operate with the same style and pace as everyone else, and as a result under-performs. Then you add in my new illness, which has given me chronic muscle pain, fatigue, short term memory loss, and concentration issues.

Notice how these issues are usually not about the condition themselves, necessarily, but about a world that isn't accessible. This gets into the theory of socially constructed disability. As one activist I met on twitter put it: "We don't overcome our disability, we overcome you". The world is built under the assumption we all do the same things in the same ways, when that is far from the case.

This book is an excellent account of the history of the disability rights movement, which is a fairly new push for civil rights from a historically marginalized group. The internet has made this movement grow and strengthen exponentially, and it was the help of many excellent advocates that I even found this book. It focuses largely on the fights leading up to the passing of the Americans with Disabilities Act, signed by George HW Bush. These fights involved paraplegics, deaf students, the mentally ill, all sorts of groups. Combined, these people demanded to have their concerns voiced, and it was a true testament to democracy that it eventually worked.

However, it also outlines how contentious issues are within the community and how much we haven't done yet. Today, in 2019, someone on disability cannot get married. Couples have had to divorce so that somebody could receive the benefits they require to live. The ADA isn't properly enforced, as workplaces find new ways to discriminate against the disabled. Mental health stigma is not only still here, it's worsening as suicide rates increase and our president tries to track us down and label us by our diagnosis. It's perpetuated by media and culture, as people mock the president as "Psychotic" and call Republicans "insane".

There's so much work to be done, but this book is a fantastic foundation piece.

[Noe · Rating 4 out of 5]

I read this for my college class and it was pretty good. If you want to learn more about the disability rights movement and people’s experience with disability, then this is a good start. Also watch the documentary, Murderball. My prof had us watch while reading & it was a good pairing.

Note: There are some outdated / offensive words used to describe people with disabilities. The author does not always use these terms, but they pop up a bit.

[Ailish Husband · Rating 5 out of 5]

I highly recommend this book! I learned so much about the ways the disabled community has fought for their rights. I love how Shapiro highlighted the stories of lots of different people with disabilities. He really demonstrated how diverse the people and needs of the disability community are. I also really like how he included a historical background as well about how disabled people were viewed and treated, and the ways that is similar and different to today. I had to read part of this book for school, but I ended up reading all of it because of how interesting it is!

[Robin Kirk · Rating 5 out of 5]

An excellent introduction to and explanation of the disability rights movement.

[Jill · Rating 4 out of 5]

This was a very informative look at the history of disability rights in the USA up to 1993. The author mostly focuses on the period between 1950 and the passage of the ADA in 1991. He does a thorough job of covering both mental/developmental disabilities and physical disabilities, as well as the Deaf culture (which is still considered a disability to some, but not to others). It was interesting to me to see how far we have come in the last 20 years, and yet how far we still have to go. It was also astonishing to me to see how few rights and how little assistance that people with disabilities had as recently as the 90's.

The book wasn't just a straightforward "this is how it is" recitation of this historical topic. It also brought up some real questions, like in the chapter on assisted suicide (No Less Worthy A Life). It made me think about the value we place on "wholeness" - in actual dollar terms.

Shapiro is a magazine writer (in the old-school good journalism way), and it shows. The book is easy to read and flows well from topic to topic, through actual people's stories, which are used as examples for the point he is trying to make. Even if you aren't particularly interested in the topic, it's easy to get sucked in. I think even teenagers would find this book useful (and interesting!) for a research paper.

[Jennifer · Rating 4 out of 5]

This book was purchased for a graduate level course of disability studies as a required textbook. Joseph Shapiro focuses on the many struggles that individuals with disabilities face, however he approaches them as a journalist and not as a person with personal experience( he does not have a disability as per his own words) . His perspective is focusing on disability in terms of a new civil rights movement. He frequently compares disability to the struggles of African-American civil rights and the main judicial/ ;legal victories that occurred.
The book main premise is that individuals with disabilities do not want pity, hence the title. They want to be included in society, not excluded or separated. As a society that really does not know how to handle disability, this book is a good start to asking some tough questions about civil rights.
This book honestly opened my eyes to the concept of disability in relation to civil rights. I am not disabled and have no personal connection to disability but I have met several individuals with disabilities as a nurse. I feel this book helped to give me a better understanding of what

[Mary · Rating 5 out of 5]

What a gem of a book this is. It has been sitting on my shelf for quite some time and I am so glad I finally read it. This book gives the history of the civil rights movement in relation to people with disabilities. It was eye opening for me even though I knew much of the history, I really didn't grasp the implications and enormity of this movement. I loved the stories of people living and fighting on the front lines and for many it has been a life and death battle to fight for their rights. It is disturbing the treatment that people with disabilities have received. But as Shapiro puts it "They are full players now in a civil rights struggle, complete with progress and backlash. But the change in mind-set is powerful enough to win rights and perhaps eventually convince a nation and the world that people with disabilities want neither pity-ridden paternalism nor overblown admiration. They insist simply on common respect and the opportunity to build bonds to their communities as full accepted participants in everyday life"

[David Kirschner · Rating 5 out of 5]

Excellent book about the history of the disability rights movement. It feels a bit dated since it was written in the early '90s after the Americans with Disabilities Act was passed, but it provides an historical window into the times. Back when people with disabilities had just won the right to fly on airplanes, back before public buses had wheelchair lifts, when people were fighting to have ramps installed in building entrances. There are a lot of stories of key people in the movement and stories of people living through deinstitutionalization and the problems that came with that.

Long story short, people with disabilities don't want or need pity. Society can change to accommodate by thinking about people with disabilities as people first, not as disabilities and objects of pity. It's relatively easy to make these changes on a societal level, and would be even easier if people with disabilities were not devalued. Of course, that requires a paradigm shift in how we think about humanness, which always faces resistance.

[Jail Flanagain · Rating 5 out of 5]

This is a great book. For a while I had wanted to read something about the disability rights movement that really covered all the history and stuff and this really hit the spot. It's really depressing the way disabled people have been treated in this country and the way they have been neglected by institutions of power as well as just being straightforwardly abused. There are some stories in here which will make your hair curl.
My only objection with the book happens to be with some areas of the disability rights movement, the idea that the assisted suicide of disabled people means that their lives are valued less. While this may often be the reason for allowing assisted suicide of disabled people, the idea that a disabled life is not worth living, I don't see why if someone wants to end their life they shouldn't be allowed to.

[Michael Burnam-Fink · Rating 4 out of 5]

This is one of the core books of the disabilities rights movement, an exhilarating journalistic account of the passage of the Americans with Disabilities Act, and several magazine length accounts of the lives of people with disabilities. Shapiro makes it clear again and again that the biggest barrier to people with disabilities living a worthwhile life on their own terms are not their impairments, or even the built environment, but social prejudice and a welfare system that funnels money to expensive institutions rather than community based care. This work is more anecdotal than synoptic, and slightly outdated (particularly in its discussion of technological developments), but it covers the major categories of disabilities (blindness, deafness, quadriplegia and cognitive impairments), and tells the stories of people with disabilities.

[patrycja polczyk · Rating 4 out of 5]

This book is really good stuff for anyone interested in rights of people with disabilities. There are many informations and stories about how those civil rights were fought for in USA. I'd say it's a book that should be read by everyone, it's quite an eye-opener. For me - as a both person with disability and researcher - this book is really important. And it has show me many things in a new light. The chapter about right to dying was incredibly powerful. But point is - this book tells a story of people who weren't afraid to fight to be included and hopefully one day it will be something completely natural thing, not something we have to fight for.

[Luisa · Rating 4 out of 5]

Lots of great information. At times, it read more like a bunch of shorter articles placed near each other, rather than a cohesive whole, but this book is a great look at the movement to ensure equal rights for people with disabilities.

Favorite quotes:

Re: Southbury Training School: "I remember what they were like, and what we, the staff, thought about their abilities. Now I see them in a whole different way, as colleagues and friends...I'm not sure if they grew, or if we just grew in the way we looked at them." (188)

[Brenda · Rating 5 out of 5]

As others have noted, it would be great to see an updated version of this book. Nonetheless, I think this book is fantastic. It's the story of the Disability Civil Rights movement. There's so much I did not know.

It made me feel:
- annoyed with Rosa Parks
- pleasantly surprised at George Bush (HW not W)
- angry
- impressed
- like doing something to help make things better.

I am so thankful for the people in this world who are born with souls and personalities that prepare them to fight for what's right....