Disability Pride

Dispatches from a Post-ADA World

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.
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
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).

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.

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

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).

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