Thursday, March 26, 2020

"Disability Visibility: First-Person Stories from the Twenty-First Century" - Edited by Alice Wong

In a world where the disabled voice is often viewed through the lens of what disability rights activist Stella Young coined as "inspiration porn" or with the rah-rah sympathies of the latest Lifetime Channel movie, a book like "Disability Visibility: First-Person Stories from the Twenty-First Century" is an act of revolutionary love and claiming of space. 

There is no "Chicken Soup for the Soul" to be found here. In its place, you find #CripLit at its finest - bold and brash, heartfelt and passionate, and incredibly well-informed essays and reflections on the vast diversity of the disability experience as told by a relatively small smattering of the leading disability voices in the 21st century. Trust me, there are more. Lots more. 

However, "Disability Visibility" editor Alice Wong has chosen her subjects well in representing the remarkable love and chaos of the disability experience. The writers themselves, representing a broad spectrum of disabilities both visible and invisible, have written with tremendous authenticity, remarkable transparency, and a vulnerability that frequently had me in tears throughout this rewarding collection.

Being released just in time for the 30th anniversary of the Americans with Disabilities Act (ADA), "Disability Visibility" doesn't mute the harshness of the disability experience. Indeed, many of the essays in the collection begin with content warnings regarding the subject matter about to be discussed - "Disability Visibility" is relentless and fierce in its commitment to an honest portrayal of the disability experience. It begins with Wong's own introduction to the collection, an introduction birthed out of Wong's own life experiences and her own work with the Disability Visibility Project, a collaboration with StoryCorps, that serves as the framework for this collection. It would be unjust to describe the essays in "Disability Visibility" with any detail, though some highlights include Harriet McBryde Johnson's riveting and squirm-inducing account of her debate with Princeton University philosopher Peter Singer, an animal rights activist who doesn't possess the same kind of regard for the lives of persons with disabilities. Upcoming authors Keah Brown and Haben Girma share involving original pieces, while some of my own favorites included s.e. smith's essays on crip space, Jamison Hill's poignant and beautiful "Love Means Never Having to Say...Anything," Leah Lakshmi Piepzna-Samarasinha's "Still Dreaming Wild Disability Justice Dreams at the End of the World," the intelligent and angry Harriet Tubman Collective's "Disability Solidarity," Britney Wilson's disturbing essay on NYC's Paratransit program, and Mari Ramsawakh's "Incontinence Is a Public Health Issue And We Need To Talk About It," the latter being an essay that truly connected with pieces of my own disability experience as a 54-year-old writer, creator, and film journalist who is also a paraplegic/double amputee with spina bifida. 

There were more essays that I loved, truly loved. There were essays that flew over my head including Jillian Weise's "Common Cyborg." I felt like I wanted to find Wong or Weise on social media and say "Explain this to me, because I have the feeling it's brilliant and I just don't quite get it." 

The truth is that I'd be hard-pressed to cite a single weak essay. 

These essays are revolutionary proclamations of the incredible richness and complexity of the disability experience. While there is much pain and anger within the pages of "Disability Visibility," it is also filled with much love and hope and wonder. As Neil Marcus so beautifully stated "Disability is not a brave struggle or "courage in the face of adversity." Disability is an art. It's an ingenious way to live." 

That truth, that disability is an ingenious way to live, is brought to life again and again in this groundbreaking collection of first-person stories from the twenty-first century that challenge and confront, claim space and serve as a literary companion of sorts. There's so many enlightening truths to be explored here, truths that will be easily embraced and understood by those with disabilities and their allies yet truths that also invite readers to challenge their own assumptions and understandings of the disability experience and disability culture. 

"Disability Visibility" is a book that illuminates the disability experience with equal parts intelligence and authentic emotional resonance. It's a book that is, at times, difficult to read yet a book that is necessary to read. It's a book I will undoubtedly revisit time and again, yet it's also a book that required I pace myself due to its stark honesty and and the often trauma-tinged stories of individual disability experiences. It's a book that captures it all and for that I am grateful and for that I highly recommend it.

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