Disability pride Dispatches from a post-ADA world

Ben Mattlin, 1962-

Book - 2022

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

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  • Introduction: Too defiant?
  • Creating rights
  • Successes, disappointments, and shortcomings
  • What is pride
  • and why does it matter?
  • Disability studies and the afterlife of cultural icons
  • Neurodiversity and autistic self-advocacy
  • Disability justice
  • Visibility, community, and context
  • The politics of beauty
  • Casting and miscasting
  • What's so funny about disability?
  • Health care disparities: Lessons of COVID-19
  • Not dead yet vs. the right to die
  • "Easy to get in [but] impossible to get out" : The struggle for deinstitutionalization and Medicaid dollars
  • Sparks of activism everywhere
  • Epilogue: Trending or truly empowering.
Review by Booklist Review

The 1990 Americans with Disabilities Act codified rights of access, dignity, and accommodation for disabled people, its passage representing the culmination of years of activism by pioneers of disability rights. But the ADA was only the beginning of a vibrant expansion of visibility and activism for disabled Americans who saw the ADA's shortcomings and dedicated themselves to the work that remained to be done. Queer, immigrant, non-white, and neurodivergent writers and thinkers have expanded the public perception of what disability looks like, while disabled artists, actors, and fashionistas have carved out space for themselves in a pop culture landscape intent on leaving them out. While telling these stories of intersectional success, Disability Pride does not shy away from the challenges and controversies that still affect the disabled community: poverty, COVID, lack of access to community care, and the terrible potential for abuse and coercion within the so-called right-to-die movement. Journalist and lifelong wheelchair user Mattlin writes with authority, compassion, inclusivity, and affection about the disability community's ongoing fight to participate fully in American society.

From Booklist, Copyright (c) American Library Association. Used with permission.
Review by Publisher's Weekly Review

Journalist Mattlin (In Sickness and in Health), who was born with spinal muscular atrophy, offers a celebratory account of disability rights activism since the passage of the Americans with Disabilities Act in 1990. Highlighting both the vibrancy of the movement and its ongoing challenges, Mattlin discusses, among other matters, the "trend of high-profile disability inclusion" that helped put Sen. Tammy Duckworth on the short list to become Joe Biden's running mate; the "unapologetic self-confidence" of young people with disabilities on Instagram and YouTube; and the importance of "authentic disabled role models" in helping children to overcome the notion that their disabilities "are personal traumas they and their families must cope with, rather than ordinary experiences." Throughout, Mattlin shares his perspective as a lifelong wheelchair user, while acknowledging the limits of his experiences when it comes to the Black-led disability justice movement, the self-advocacy of autistic and neurodiverse people, and other developments. Profile subjects include Duckworth, Last Comic Standing winner Josh Blue, and dozens of disability rights activists involved in efforts to make medical offices more accessible and keep lower-income disabled people out of institutional care, among other causes. Upbeat and carefully researched, this valuable guide reveals current trends within the disability community. (Nov.)

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Review by Library Journal Review

The Americans with Disabilities Act was passed more than 30 years ago--and a lot has happened in that time. Journalist Mattlin (In Sickness and in Health), who lives with spinal muscular atrophy, states that this book began as a personal mission to reconnect with the wider disability community and understand the ways it's expanded and flourished in the years since the ADA. The resulting volume is both sobering and heartening. He touches on several topics that are painful (the continuing problem of enforced institutionalization) or controversial (the complex intersections of disability with assisted suicide). He also dedicates a large portion of the book to his observations of positives by highlighting the community's activists and self-advocates: models, actors, and comedians, policymakers and politicians, and people simply living their everyday lives. He acknowledges that their visibility and accomplishments, by no means, indicate the situation has reached true equality. It's a presentation that underscores one of the book's central points: full acceptance of people with disabilities in all spaces is critical and required. VERDICT 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

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Review by Kirkus Book Review

A disabled journalist charts the progress his community has made since the passage of the Americans With Disabilities Act in 1990, but he is clear that "we are not resting on our laurels." Born with spinal muscular atrophy, Mattlin offers unique insights into disabled people's fights for civil rights, the many faces of ableism, and the emergence of a spirit of disability pride. "The idea of disability has shifted from a medical signifier to an emblem of cultural identity," writes the author, and he shows the links between the fight against disability oppression and the civil rights movement. He describes a move from "internalized ableism" and disability shame to the sense that, as one activist noted, "being disabled can be a positive experience." Mattlin illustrates the "trend of high-profile disability inclusion" with examples from the worlds of fashion, Hollywood, Broadway, and government, and he explains all five main "titles" of the ADA and follows the path of its many amendments and implications. Most significantly, the author expands the parameters of disability to include those with hidden disabilities, chronic illnesses, cognitive and intellectual disabilities, and autism spectrum disorders. He makes convincing arguments that "poverty is linked to high incidences of every disability type" and that White privilege is a continuing problem in mainstream disability circles. The author laments the flawed representations of disabilities in Greek myth, Shakespearean drama, and contemporary film and TV. "The only disability figures in the media were Captain Hook or villains in James Bond," said a disabled male model whose "ruggedly" handsome face and "rippling" muscles prove that "disability doesn't have to be ugly," as actor Jillian Mercado notes on her agency's website. Mattlin cites relevant public personalities such as Ali Stroker, the first actor in a wheelchair to win a Tony Award. The author also describes "adaptive apparel" that meets the needs and tastes of disabled people and introduces some stand-up comedians living with disability, using humor as a tool of awareness. Illuminating portraits of disability activism with much to teach nondisabled readers. Copyright (c) Kirkus Reviews, used with permission.

Copyright (c) Kirkus Reviews, used with permission.