Disability Pride: Dispatches from a Post-ADA World

by Ben Mattlin

An eye-opening portrait of the diverse disability community as it is today, and how disability attitudes, activism, and representation have evolved since the passage of the Americans with Disabilities Act (ADA)

In Disability Pride , disabled journalist Ben Mattlin weaves together interviews and reportage to introduce a cavalcade of individuals, ideas, and events in engaging, fast-paced prose. He traces the generation that came of age after the ADA reshaped America, and how it is influencing the future. He documents how autistic self-advocacy and the neurodiversity movement upended views of those whose brains work differently. He lifts the veil on a thriving disability culture—from social media to high fashion, Hollywood to Broadway—showing how the politics of beauty for those with marginalized body types and facial features is sparking widespread change.

He also explores the movement’s shortcomings, particularly the erasure of nonwhite and LGBTQIA+ people that helped give rise to Disability Justice. He delves into systemic ableism in health care, the right-to-die movement, institutionalization, and the scourge of subminimum-wage labor that some call legalized slavery. And he finds glimmers of hope in how disabled people never give up their fight for parity and fair play.

Beautifully written, without anger or pity, Disability Pride is a revealing account of an often misunderstood movement and identity, an inclusive reexamination of society’s treatment of those it deems different .

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

272 pages, Paperback

First published November 15, 2022

Reviews

[Megan Ambuske · Rating 4 out of 5]

4.5 stars, should be required reading for healthcare professionals

[Shomeret · Rating 5 out of 5]

Disability Pride by Ben Mattlin was a book that I downloaded from Edelweiss, which provides digital copies of books in advance of publication. Mattlin's book is scheduled to be published in November 2022. I feel privileged to have read it early.

I thought this was an interesting and insightful book, though I sometimes had a hard time figuring out what Mattlin intended to say.

For my complete review see https://shomeretmasked.blogspot.com/2...

[Emily · Rating 3 out of 5]

There's a lot to learn in here, but I got bogged down by the endless names of organizations, legislation, activists, bloggers, court cases, protests, etc. Disability Visibility is a better read for this content IMO.

[Devin Shuman · Rating 3 out of 5]

The author ends the book with a disclosure of how while writing this book he learned a lot about the disability community and sadly that showed during the entire book. It read very basic, as someone just starting to explore what other books like Care Work have such a better understanding of. It made it difficult to enjoy sadly.

[Bryan · Rating 5 out of 5]

I love this new book. I think everyone in the disabled community should read it. It is aimed at updating No Pity, also an essential text to read.

[Lecy Beth · Rating 3 out of 5]

There was tons of great information in this book but I felt like I was bogged down by a lot of names and groups of people who contributed to disability rights and advancing disability pride. I borrowed this from the library and had to speed through it before my loan ended, but I think it would have been better to take my time reading this.

[Jeffrey Pedro · Rating 5 out of 5]

Mattlin’s Disability Pride is another piece that is vital in the decolonization process. This book examines the history of disability activism and the various legislature that have impacted the community both positively and negatively. It also highlights many people within the community and their lived experience. The American Disability Act of 1990 was passed to allow protections for people with disabilities. Although it’s been a little over 30 years since its passing, much progress is still needed to make the community’s livelihood equitable. Mattlin truly understands the legacy of colonialism (white supremacy) and how it has built institutions and enforced dysfunctional policies that have oppressed not only his community, but those of other marginalized groups. 👏👏👏

[Lynsey Nicole · Rating 4 out of 5]

Mattlin crams lots of important history as well as current issues with how society (media, movies/television, legislation, places of employment, fashion industry, just to name a few areas) views and treats disabled people. I appreciate how he acknowledges his privilege as a white man and makes space for anecdotes and quotes by many other intersections (BIPOC, LGBTQIA+) of disabled people.

I would definitely recommend this book to those wanting to gain deeper perspective of Disability issues and Justice post-ADA, and to chip away at ableist biases.

4 stars because I learned a lot and the content is strong, but it is A LOT of information to follow.

[Kelly Fitzpatrick · Rating 5 out of 5]

Really great book.

Pretty comprehensive history of disability laws and iconic moments/ people in US history surrounding disability justice.

Would recommend to anyone looking into DJ.

[Megan · Rating 5 out of 5]

"Disability Pride" is a masterclass on disability justice history and progress. Highly recommend!

[Lauren · Rating 3 out of 5]

I liked how this book was organized, and the stories from various sources/environments/situations all helped me consider how to be not only a better practitioner in the realm of disability, but also how to be a better advocate and person. Would recommend to people with interest/investment in this particular topic.

-“Sometimes people don’t know what to do with something they haven’t encountered before.”

[Slay All Day · Rating 4 out of 5]

A great historiography of the ADA movement. Would like to have seen more attention paid to non-physical/non-neurological disabilities as well, but all in all a great read.

[Jennifer Bauer · Rating 5 out of 5]

So good! I feel better about my disabilities. Thank you to the author!

[Sarah · Rating 4 out of 5]

3.5 stars. I am a new member of the disability community, and was reticent to use that label before. But recently, learning more about chronic illness and neurodiversity, and now with this book, I'm... maybe not comfortable, but less uncomfortable.

The author is upfront that, although disabled, he has privileges as a cis, straight, white, middle-aged man; there are occasional observations in which he reflects on how his experience has been different, or reflects on the intersectionality/ies affecting others in the community. Additionally, the author emphasizes early in the book that his intention is to center the voices of disabled people of other backgrounds. Space in the book is mostly given to disabled women, People of Color, and LGBTQ+ people, from whom he quotes heavily. Way to go for allyship!

The book gives a good history of the disability movement-- almost all of it new to me-- and then goes on to give examples of some recent developments, such as representation in media, leadership, government, and more. This is a great resource for anyone newly-disabled (it's a minority group you can join, or may be forced into, at anytime), or with a disabled family member or friend. Also consider reading for anyone working on equity practices at work.

The only thing that I'd suggest to the author/editor for future editions or similar books is: the author includes so many unique and well-qualified voices from the disabled community, but in an effort to include every relevant fact, a lot of sentences get bogged down. A very generic example would be: [Name], [position 1], [prior occupation 2], [credential 3], [award 4], and [award 5], [begin quotation]. Future editions might highlight the referenced person's most recent or most important qualification in text and list the rest of the details in a footnote. (A footnote, never a chapter-endnote or a book-endnote!)

Physical ARC that maybe I picked up last spring at PLA, or maybe it came in the mail sometime?

[Amy · Rating 3 out of 5]

I think I picked this one up with the wrong expectations. For some reason (perhaps because of the person who recommended it to me?) I thought it was going to be about the legal and legislative battles that brought forth the ADA. Which it is...kind of.
It is also a look at the history of autism, recent right to die legislation, increased exposure to disabled models via the internet, portrayal in the media, use of language, etc.
The book is very careful with its language and highlighting different intersectional identities of the people referenced within its pages. The book mentions the difficulty in defining disabilities, but never provides a definition. In some ways, the point is that it would be impossible to without leaving something out. But I think the lack of definition also made it difficult to fully grasp what the call is here. Expansion of the ADA? More legislation? More TV shows focusing on characters with disabilities?
I also found this book frustrating because in general, it engages very little with counter-arguments. Maybe that is just my lawyer brain. But I would find myself with a whole list of questions about 'the other side of that argument' that would go entirely unacknowledged. I suppose the response would be that this book isn't for airing 'the other side.' It is more descriptive than proscriptive. But at the same time, it does much more than describe life for those with disabilities. It openly criticizes certain policies and praises others. Without engaging with counter-claims, it loses an opportunity to really hone in why some policies are worth praise and others are not.
Overall, besides a general awareness, I feel like the book missed an opportunity to make a sustained argument. It was, however, informative and I feel like I have a better understanding and starting point in discussing these issues.

[Allison Brenneise · Rating 4 out of 5]

4.0 stars -- This book gives a (mostly) overview of the disability community. Chapters or parts that I think my friends would want to really look closely at would be Chapter 5 - neurodiversity and autistic self-advocacy, chapter 8 - politics of beauty, chapter 9 - casting and miscasting, and chapters 11 -health care disparities, chapter 13 - easy to get in [but] impossible to get out. The authors tells of many disability activists that are already on our radar (including TL) but mentions many others I had never heard of or knew very little about. It was nice to see communication and disability scholars Beth Haller get quoted fairly extensively as well as Margaret Quinlan & Benjamin Bates. Even Sky Cubaacub gets as decent mention. The book took a while for me to get through -- it was a little drier than other books on this topic.

[Susan · Rating 5 out of 5]

I randomly picked this up off the library New Arrivals shelf, and it was an excellent choice. Mattlin makes the point that there is a whole generation of disabled people who have grown up after the ADA (Americans with Disabilities Act) was enacted, and they *expect* that they have a right to education, to accessible buildings, to work, and more in a way that the previous generation didn’t because that used to be the fight. Particularly having been included in the education system from childhood, the younger generation is now primed to be activists in a whole new way, fighting for acceptance, visibility, services, and more through all areas of culture and community. This book is well organized, readable, and relevant for absolutely everyone.

[Ngani · Rating 5 out of 5]

I loved this read. I savored this inclusive and thoughtful discussion of disability justice & disability pride — past and present. For weeks I’ve recounted to anyone who would listen, examples of when Mattlin embraced opportunities to discuss the intersectionality of movements and identities.

I even more appreciated the really thoughtful explanation of the disability community POV of things like the right to die movement. Overall, as an allistic person I felt included and seen, and as an American I feel informed and empowered to contribute more to this movement. More leaders to listen to and follow, more policies to watch and support. I feel really lucky to have read this and to have added to my awareness.

[Gabrielle · Rating 4 out of 5]

At the beginning of this book, Mattlin expresses that this is an "exploration, not a primer", and that he used his writing as a way to further his own understanding of the progress made since the ADA. This was enough for me to explain away certain omissions and explanations (ie the use of D/deaf rather than deaf), but it may not be for some readers.
I particularly enjoyed the chapters about disability pride itself and the use of comedy and humor in disabled spaces, they provided a levity I'm not used to in this genre. Similarly, I felt this book had the most empathetic approach I've yet seen to both sides of the right to die debate.
Overall, not my favorite disability justice book but still high up there!

[EmberMantles]

The first chapter opens with discussion of disabled celebrities, then goes on to mention disabled politicians, and the oscars. There's a strong sense of exceptionalism, that disabled people are valuable because so many of us have achieved success under capitalism, rather than the truth: disabled people are valuable simply because we exist, just like all other people.

The author also uses the term "deformities", rather than the respectful "differences", when describing people's appearance.

Other chapters may be better, but I'm just not interested in spending my limited time on a book that seems to push assimilation.

[Marissa (Bookish City Gal) · Rating 4 out of 5]

3.5 stars rounded up. The subject of this book is interesting to me as I’ve spent my career working with individuals with varying disabilities and wanting to learn more about their experiences. This book covers quite a lot in a fairly short book but I felt at times some of the chapter messages got lost with the frequent quotes and name drops. I couldn’t tell you even a handful of the names I read about because there were so many. I would have also appreciated hearing more about this author’s own experiences with the ADA.

[Janet · Rating 5 out of 5]

Get used to it!

When, in college in the mid-Seventies, I chose to write a Politics of Education project suggesting that schools for the disabled be subject to community control--a big issue at the time--and that the appropriate "community" was disabled adults, not parents, my proposal was treated as speculative fiction.
I'm thrilled to learn that the community has developed leaders and that many disabled people no longer find the closet or institution an appropriate place. Loud and proud, they will be making decisions as to their own futures.

[Susan · Rating 3 out of 5]

This felt like a good companion for Neurotribes since I kept that one wanting more stories of self advocates and I feel like this one filled this gap a little better.

Unfortunately, as long as Neurotribes had been, I found it somehow more readable. This one got a bit dense. It's at its best focusing on individual stories. I was particularly moved by the section discussing the Nancy Cruzan and Terri Schiavo controversies which I remembered from my childhood. It really made me rethink a lot of misconceptions I've had about the "right to die" movement and some of its agendas.

[seo · Rating 3 out of 5]

i came to this book, wanting to learn more about the history of the disability justice movement, and i got exactly what i asked for. mattlin discusses the history behind certain policies and organizations, changes and transitions in the disability justice movement, and notable figures in the movement such as mia mingus, eli clare, leah piepzna-samarasinha, etc. it's a good starting place if you want to know more about the history and to find specific figures to look into, but the book doesn't delve as much into theory and praxis.

[Stuart · Rating 4 out of 5]

One of the most comprehensive surveys of what it means to be disabled in the twenty first century. One of the few books I’ve read recently to cover the golden era of disability right in depth and nuance, while also covering the latest on disability justice and it’s champions. Would only wish that, on balance, we could spend more time on disability pride (vs disability history and issues survey.

[Shannon · Rating 4 out of 5]

Despite the fact that I am not really a non-fiction girlie most days, I got through this informative and important work pretty quickly. The author is very clear to point out his own privilege as a straight cis man and does a great job including stories, quotes, and research from folks across the spectrums of gender, sexuality, and ability. I learned a lot and have a lot of reflecting to do regarding my own privilege and responsibility to the disabled community as someone in the marketing field.

[Heather - Just Geeking By · Rating 3 out of 5]

I chose to stop reading this one as I made a mistake, and didn't stop to realise that a book mentioning the ADA would be US based. As a British disabled person this was an interesting read but not relevant to me. While the first few chapters gave me a better insight into the system my American friends have to work within, I have limited energy due to my ME/CFS and this isn't an easy read. It's a good book, it's just not for me.

[Ellen Simon · Rating 4 out of 5]

there's a lot to learn from this book, but i felt like i wasn't able to fully process everything Ben Mattlin was saying because he name dropped SO MANY organizations, legislations, activists, bloggers, court cases, protests, etc. overall this is a pretty comprehensive history of disability laws and iconic moments/ people in US history surrounding disability justice and i did learn a lot! just took some rereading to get there

[Rebekah Palmer]

Excellent overview about disability as a cultural identity: it links to a group of humans with shared history, similar sets of experiences, sociopolitical concerns, and a message to the world.

The book is written in three sections of essays: ADA generation grows up, presentation and representation, and the continuing evolution of disability activism.

A perfect addition to disability studies and the general public knowledge of disability history in the USA!

[Dan Castrigano · Rating 3 out of 5]

Good. I read it over the course of about a month so have forgotten a lot of it now that I'm done. I appreciated Mattlin's focus on invisible disabilities. It was also good to read about "disability spokespeople" and how they're predominantly white cisgender males with more "socially acceptable" disabilities, like having one leg or one arm. Mattlin discussed how leaders in the disability justice movement should have more intersectional identities.