Disability Pride

Dispatches from a Post-ADA World

Paperback
$21.95 US
On sale Nov 14, 2023 | 272 Pages | 9780807013335
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.
“A celebratory account . . . Upbeat and carefully researched, this valuable guide reveals current trends within the disability community.”
Publishers Weekly

“Illuminating portraits of disability activism with much to teach nondisabled readers.”
Kirkus Reviews

“A sincere, thoughtful look at the advances made by the disabled community that deserve celebration and the improvements still to be made in all areas.”
—Kathleen McCallister, Library Journal

“A notable landmark examination…Disability Pride should take center place in any discussion of past, present, and future inclusive actions and perceptions of the disabled community as a whole.”
Midwest Book Review

“Ben Mattlin’s stunning book Disability Pride marks a pivotal moment in the world of disability rights and in the lives of those who live in disabled bodies. Comprehensively researched and compulsively readable, Mattlin’s work tracks how far we’ve come in terms of accessibility and equity, and how far we have—still—to go.”
—Emily Rapp Black, author of The Still Point of the Turning World

“When discussing pride regarding our disabilities, Ben Mattlin gives the community a source of reflection, inclusion, inspiration, and, more importantly, a sense of belonging. The disability community is often marginalized and demonized for our mere existence—this book is an important step toward full inclusion and acceptance of what and who we are.”
—Keith P. Jones, president of SoulTouchin’ Experiences

“Passionate, deeply researched, and full of insight, Disability Pride probes the most profound legacy of the ADA: the ways that it forever transformed how disabled people feel about themselves, from passive recipients of charity to active agents in the transformation of society and leaders in a new kind of civil rights movement. A brilliantly written and timely book.”
—Steve Silberman, author of NeuroTribes: The Legacy of Autism and the Future of Neurodiversity

“Ben Mattlin’s Disability Pride is a highly readable narrative of a post-ADA US, where those of us with disabilities have more visibility but whose stories, and lives, are still controlled by mainstream media, which still does not provide true authentic disability depictions.”
—Kenny Fries, author of In the Province of the Gods

“Ben Mattlin takes us on a brilliant tour of the post-ADA world. . . . Mattlin is clear-eyed about what he believes is needed: more. More laws, more inclusion, more understanding. Disability Pride is both a compelling travelogue and a much-needed rallying cry.”
—Adam Cohen, author of Supreme Inequality: The Supreme Court’s Fifty-Year Battle for a More Unjust America

“Ben Mattlin’s new book Disability Pride is a gorgeous, well done, and well-rounded report and perspective on disability justice and rights throughout American history—both objectively and through Mattlin’s lens. As someone who is Gen Z, I find it particularly poignant to learn about disability history and so many other different perspectives and lives in the disabled community through this book. Reading Disability Pride has been such a beautiful experience, and I’m so grateful for Mr. Mattlin and this incredible work.”
—Aaron Rose Philip, supermodel, social media influencer, and author of This Kid Can Fly
Ben Mattlin is a journalist, essayist, and author. Born with spinal muscular atrophy, a congenital muscle weakness, he has been a lifelong wheelchair user. His books include Miracle Boy Grows Up and In Sickness and In Health. His work has appeared in the New York Times, Los Angeles Times, Washington Post, Chicago Tribune, USA Today, and Vox, and on NPR. He lives in Los Angeles, California. Follow him on Twitter (@benmattlin).
INTRODUCTION
Too Defiant?

PART I: THE ADA GENERATION GROWS UP

CHAPTER 1
Creating Rights

CHAPTER 2
Successes, Disappointments, and Shortcomings

CHAPTER 3
What Is Pride—And Why Does It Matter?

CHAPTER 4
Disability Studies and the Afterlife of Cultural Icons

PART II: PRESENTATION AND REPRESENTATION

CHAPTER 5
Neurodiversity and Autistic Self-Advocacy

CHAPTER 6
Disability Justice

CHAPTER 7
Visibility, Community, and Context

CHAPTER 8
The Politics of Beauty

CHAPTER 9
Casting and Miscasting

CHAPTER 10
What’s So Funny About Disability?

PART III: THE CONTINUING EVOLUTION OF DISABILITY ACTIVISM

CHAPTER 11
Health-Care Disparities: Lessons of COVID-19

CHAPTER 12
Not Dead Yet vs. the Right to Die

CHAPTER 13
“Easy to Get In [but] Impossible to Get Out”: The Struggle for Deinstitutionalization and Medicaid Dollars

CHAPTER 14
Sparks of Activism Everywhere

EPILOGUE
Trending or Truly Empowering?

Acknowledgments
Notes
Indes

About

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.

Praise

“A celebratory account . . . Upbeat and carefully researched, this valuable guide reveals current trends within the disability community.”
Publishers Weekly

“Illuminating portraits of disability activism with much to teach nondisabled readers.”
Kirkus Reviews

“A sincere, thoughtful look at the advances made by the disabled community that deserve celebration and the improvements still to be made in all areas.”
—Kathleen McCallister, Library Journal

“A notable landmark examination…Disability Pride should take center place in any discussion of past, present, and future inclusive actions and perceptions of the disabled community as a whole.”
Midwest Book Review

“Ben Mattlin’s stunning book Disability Pride marks a pivotal moment in the world of disability rights and in the lives of those who live in disabled bodies. Comprehensively researched and compulsively readable, Mattlin’s work tracks how far we’ve come in terms of accessibility and equity, and how far we have—still—to go.”
—Emily Rapp Black, author of The Still Point of the Turning World

“When discussing pride regarding our disabilities, Ben Mattlin gives the community a source of reflection, inclusion, inspiration, and, more importantly, a sense of belonging. The disability community is often marginalized and demonized for our mere existence—this book is an important step toward full inclusion and acceptance of what and who we are.”
—Keith P. Jones, president of SoulTouchin’ Experiences

“Passionate, deeply researched, and full of insight, Disability Pride probes the most profound legacy of the ADA: the ways that it forever transformed how disabled people feel about themselves, from passive recipients of charity to active agents in the transformation of society and leaders in a new kind of civil rights movement. A brilliantly written and timely book.”
—Steve Silberman, author of NeuroTribes: The Legacy of Autism and the Future of Neurodiversity

“Ben Mattlin’s Disability Pride is a highly readable narrative of a post-ADA US, where those of us with disabilities have more visibility but whose stories, and lives, are still controlled by mainstream media, which still does not provide true authentic disability depictions.”
—Kenny Fries, author of In the Province of the Gods

“Ben Mattlin takes us on a brilliant tour of the post-ADA world. . . . Mattlin is clear-eyed about what he believes is needed: more. More laws, more inclusion, more understanding. Disability Pride is both a compelling travelogue and a much-needed rallying cry.”
—Adam Cohen, author of Supreme Inequality: The Supreme Court’s Fifty-Year Battle for a More Unjust America

“Ben Mattlin’s new book Disability Pride is a gorgeous, well done, and well-rounded report and perspective on disability justice and rights throughout American history—both objectively and through Mattlin’s lens. As someone who is Gen Z, I find it particularly poignant to learn about disability history and so many other different perspectives and lives in the disabled community through this book. Reading Disability Pride has been such a beautiful experience, and I’m so grateful for Mr. Mattlin and this incredible work.”
—Aaron Rose Philip, supermodel, social media influencer, and author of This Kid Can Fly

Author

Ben Mattlin is a journalist, essayist, and author. Born with spinal muscular atrophy, a congenital muscle weakness, he has been a lifelong wheelchair user. His books include Miracle Boy Grows Up and In Sickness and In Health. His work has appeared in the New York Times, Los Angeles Times, Washington Post, Chicago Tribune, USA Today, and Vox, and on NPR. He lives in Los Angeles, California. Follow him on Twitter (@benmattlin).

Table of Contents

INTRODUCTION
Too Defiant?

PART I: THE ADA GENERATION GROWS UP

CHAPTER 1
Creating Rights

CHAPTER 2
Successes, Disappointments, and Shortcomings

CHAPTER 3
What Is Pride—And Why Does It Matter?

CHAPTER 4
Disability Studies and the Afterlife of Cultural Icons

PART II: PRESENTATION AND REPRESENTATION

CHAPTER 5
Neurodiversity and Autistic Self-Advocacy

CHAPTER 6
Disability Justice

CHAPTER 7
Visibility, Community, and Context

CHAPTER 8
The Politics of Beauty

CHAPTER 9
Casting and Miscasting

CHAPTER 10
What’s So Funny About Disability?

PART III: THE CONTINUING EVOLUTION OF DISABILITY ACTIVISM

CHAPTER 11
Health-Care Disparities: Lessons of COVID-19

CHAPTER 12
Not Dead Yet vs. the Right to Die

CHAPTER 13
“Easy to Get In [but] Impossible to Get Out”: The Struggle for Deinstitutionalization and Medicaid Dollars

CHAPTER 14
Sparks of Activism Everywhere

EPILOGUE
Trending or Truly Empowering?

Acknowledgments
Notes
Indes

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We’re pleased to share videos from the 2024 First-Year Experience® Conference. Whether you weren’t able to join us at the conference or would simply like to hear the talks again, please take a moment to view the clips below.   Penguin Random House Author Breakfast Monday, February 19th, 7:15 – 8:45 am PST This event

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