Disability Visibility: First-Person Stories from the Twenty-First Century

by Alice Wong (Editor)

Overview

A groundbreaking collection of first-person writing on the joys and challenges of the modern disability experience: Disability Visibility brings together the voices of activists, authors, lawyers, politicians, artists, and everyday people whose daily lives are, in the words of playwright Neil Marcus, "an art . . . an ingenious way to live." • Edited by MacArthur "Genius Grant" Fellow Alice Wong

“Shares perspectives that are too often missing from such decision-making about accessibility.” —The Washington Post

According to the last census, one in five people in the United States lives with a disability. Some are visible, some are hidden—but all are underrepresented in media and popular culture. Now, just in time for the thirtieth anniversary of the Americans with Disabilities Act, activist Alice Wong brings together an urgent, galvanizing collection of personal essays by contemporary disabled writers.There is Harriet McBryde Johnson's "Unspeakable Conversations," which describes her famous debate with Princeton philosopher Peter Singer over her own personhood. There is columnist s. e. smith's celebratory review of a work of theater by disabled performers. There are original pieces by up-and-coming authors like Keah Brown and Haben Girma. There are blog posts, manifestos, eulogies, and testimonies to Congress.

Taken together, this anthology gives a glimpse of the vast richness and complexity of the disabled experience, highlighting the passions, talents, and everyday lives of this community. It invites readers to question their own assumptions and understandings. It celebrates and documents disability culture in the now. It looks to the future and past with hope and love.

Product Details

ISBN-13:	9781984899422
Publisher:	Knopf Doubleday Publishing Group
Publication date:	06/30/2020
Pages:	336
Product dimensions:	5.10(w) x 7.90(h) x 0.80(d)

About the Author

Alice Wong is a disabled activist, media maker, and research consultant based in San Francisco, California. She is the founder and director of the Disability Visibility Project, an online community dedicated tocreating, sharing, and amplifying disability media and culture. Alice is also the host and co-producer of the Disability Visibility podcast and co-partner in a number of collaborations such as #CripTheVote and Access Is Love. From 2013 to 2015, Alice served as a member of the National Council on Disability, an appointment by President Barack Obama. You can follow her on Twitter: @SFdirewolf. For more: disabilityvisibilityproject.com.

Table of Contents

Introduction Alice Wong xv

Part 1 Being

Unspeakable Conversations Harriet McBryde Johnson 3

For Ki'tay D. Davidson, Who loves Us Talila A. Lewis 28

If You Can't Fast, Give Maysoon Zayid 36

There's a Mathematical Equation That Proves I'm Ugly-Or So I Learned in My Seventh-Grade Art Class Ariel Henley 39

The Erasure of Indigenous People in Chronic Illness Jen Deerinwater 47

When You Are Waiting to Be Healed June Eric-Udorie 53

The Isolation of Being Deaf in Prison Jeremy Woody, as told to Christie Thompson 59

Common Cyborg Jillian Weise 63

I'm Tired of Chasing a Cure Liz Moore 75

Part 2 Becoming

We Can't Go Back Ricardo T. Thornton Sr. 85

Radical Visibility: A Disabled Queer Clothing Reform Movement Manifesto Sky Cubacub 90

Guide Dogs Don't Lead Blind People. We Wander as One. Haben Girma 101

Taking Charge of My Story as a Cancer Patient at the Hospital Where I Work Diana Cejas 104

Canfei to Canji: The Freedom of Being Loud Sandy Ho 112

Nurturing Black Disabled Joy Keah Brown 117

Last but Not Least-Embracing Asexuality Keshia Scott 121

Imposter Syndrome and Parenting with a Disability Jessica Slice 129

How to Make a Paper Crane from Rage Eisa Sjunneson 134

Selma Blair Became a Disabled Icon Overnight. Here's Why We Need More Stories Like Hers. Zipporah Arielle 141

Part 3 Doing

Why My Novel Is Dedicated to My Disabled Friend Maddy A. H. Reaume 149

The Antiabortion Bill You Aren't Hearing About Rebecca Cokley 159

So. Not. Broken. Alice Sheppard 164

How a Blind Astronomer Found a Way to Hear the Stars Wanda Díaz-Merced 168

Incontinence Is a Public Health Issue-And We Need to Talk About It Mari Ramsawakh 174

Falling/Burning: Hannah Gadsby, Nanette, and Being a Bipolar Creator Shoshana Kessock 179

Six Ways of Looking at Crip Time Ellen Samuels 189

Lost Cause Reyma McCoy McDeid 197

On NYC's Paratransit, Fighting for Safety, Respect, and Human Dignity Britney Wilson 205

Gaining Power through Communication Access Lateef McLeod 220

Part 4 Connecting

The Fearkss Benjamin Lay: Activist, Abolitionist, Dwarf Person Eugene Grant 229

To Survive Climate Catastrophe, Look to Queer and Disabled Folks Patty Berne, as told to and edited by Vanessa Raditz 232

Disability Solidarity: Completing the "Vision for Black Lives" Harriet Tubman Collective 236

Time's Up for Me, Too Karolyn Gehrig 243

Still Dreaming Wild Disability Justice Dreams at the End of the World Leah Lakshmi Piepzna-Samarasinha 250

Love Means Never Having to Say … Anything Jamison Hill 262

On the Ancestral Plane: Crip Hand-Me-Downs and the Legacy of Our Movements Stacey Milbern 267

The Beauty of Spaces Created for and by Disabled People s.e. smith 271

About the Editor 277

About the Contributors 279

Further Reading 293

Permission Acknowledgments 305

Editorial Reviews

ONE OF THE PROGRESSIVE'S BEST BOOKS OF THE YEAR • ENTROPY'S BEST OF NONFICTION

“Disability rights activist Alice Wong brings tough conversations to the forefront of society with this anthology. It sheds light on the experience of life as an individual with disabilities, as told by none other than authors with these life experiences. It's an eye-opening collection that readers will revisit time and time again.” —Chicago Tribune

“Shares perspectives that are too often missing from such decision-making about accessibility.” —The Washington Post

“Implicitly (and sometimes explicitly) makes the case for acknowledging and accommodating society’s overlooked population of disabled people.” —The New York Times Book Review

“An exemplary collection. . . . This month’s #RequiredReading.” —Ms. Magazine

“A raw, emotional collection, an investment in the power of storytelling to foster vibrant connections, and an unapologetic rejection of ‘internalized ableism’. . . . The 37 powerful stories in Disability Visibility reveal the depth of everyday courage and the extraordinary human capacity to find humor in the face of life’s adversities.” —Shelf Awareness

“Roughly 15 percent of people around the world have a disability, and yet their stories are often never told. Alice Wong’s anthology, Disability Visibility, brings their narratives front and center with the goal of showcasing the wide range of modern disability experiences. . . . Ultra-impressive.” —Shondaland, "10 Books Set to Become the New Feminist Classics"

“By its very nature, the disability community is incredibly intersectional and diverse, including people from all walks of life, backgrounds, and cultures. Disability Visibility reflects that diversity with its contributors, giving . . . a look at a wide range of experiences and types of disability.” —Book Riot

“Alice Wong . . . has long been at the forefront of the disability justice movement.” —Bitch Media, “17 Books Feminists Should Read in June”

“More resonant than ever. In this kaleidoscopic collection, Wong and her contributors provide not just a snapshot of what disability has meant in the past 20 years, but an urgent invitation to take that understanding forward. . . . A landmark resource for understanding disability.” —Autostraddle

“Diverse and poignant. . . . I was deeply moved by more pieces than I could name.” —Shir Kehila, Columbia Journal

“Every piece in Disability Visibility evokes . . . tenacity, some gut-wrenching and others inspiring. . . . The range of subjects is impressive: assistive technologies, carceral injustice, fashion, homophobia and heterosexism, medical care and medical abuse, organizing strategies, psychotherapy, racism, relationships, sex, and sexism.” —The Progressive

“Celebrates and documents the lived experiences, power, and culture of the disabled community.” —Morning Brew

“Wong’s discerning selections, bolstered by the activism that shines through, will educate and inspire readers.” —Kirkus Reviews

“These essays are the heart, the bones, and the blood of Disability Rights.” —Gaelynn Lea, musician and activist

“To Alice Wong, words like diversity and intersectionality aren’t just buzzwords. They are marching orders. Everyone should take in the wisdom woven throughout this book.” —W. Kamau Bell, host of United Shades of America

“A celebration and a source of deep education for many to bear witness (and feel seen by) the vastness of disabled stories, voices, and backgrounds.” —Jennifer Baker, editor of Everyday People: The Color of Life

“As a Deaf Asian American, it wasn’t until recent years that I started considering myself disabled. This is a very informed starting point for anyone who, like myself, would like to get a better understanding of disability as a massive and beautifully nuanced spectrum.” —Christine Sun Kim, artist

From the Publisher

06/01/2020

In the powerful introduction to this collection, Wong, founder of the Disability Visibility Project and host of the related podcast Disability Visibility, reminds us that disability is not a monolith and that disability rights are civil rights. As she does on her podcast, #CripTheVote, Wong lets people speak for themselves. Standout essays include those by Jen Deerinwater on disparities in health care among Indigenous people; Diana Cejas on the vulnerability of being a patient in the hospital where she works; A.H. Reaume on the myth of independence and the need for more representation in literature; and Ellen Samuels on "crip time," or not living life in normative stages. Alongside prominent figures, such as Maysoon Zayid, Keah Brown, and Haben Girma, readers are introduced to others who are sharing their experiences for the first time. The collection sheds insight on topics that are rarely explored in mainstream works, including the difficulties of finding adaptive clothing, the dangerous mindset of the cure mentality, and the high rates of disability among LGBTQ people. Overall, Wong urges people with disabilities to expect more and deserve more. VERDICT Bringing varied voices to the forefront, this collection is an ideal starting ground for finding community and sparking further reading.—Stephanie Sendaula, Library Journal

Library Journal

2020-03-19
A self-described "disabled activist” brings together diverse perspectives in an anthology to be published on the 30th anniversary of the Americans With Disabilities Act.

Wong, the founder and director of the Disability Visibility Project, makes it clear that she never intended the book to serve as a "best of" work or a quasi-academic syllabus for “Disability 101.” As she writes, “I want to center the wisdom of disabled people and welcome others in, rather than asking for permission or acknowledgment.” The editor notes that, according to the most recent U.S. census, 20% of citizens in the country live with a disability. The book is divided into four sections. "Being" captures writings that explain the daily challenges of wrestling with a disability, from blindness and deafness to autism, bipolar personality, generalized mental illness, fibromyalgia, cerebral palsy, spina bifida, and others. In “Becoming,” the essays focus less on defining a specific disability and more on how the contributors have figured out how to follow a life-affirming path. "Doing" displays the accomplishments—many of them quite remarkable—that affect not only the anthologists, but also society at large. The final section, "Connecting," illuminates how those labeled as disabled find ways to transcend isolation. Some of the essays are original, but many have been previously published in newspapers, magazines, scholarly journals, and elsewhere. Readers will recognize relatively common scenes, such as Haben Girma’s navigating with a guide dog (“Guide Dogs Don’t Lead Blind People. We Wander as One.”), while other contributions ably demonstrate that not all disabilities are apparent. Recognizing that “it is impossible to capture the full expanse of the disability experience in one book,” the editor offers a robust section of further reading that encompasses not just nonfiction, but also fiction, poetry, podcasts, and other forms of expression.

Wong's discerning selections, bolstered by the activism that shines through, will educate and inspire readers.

Kirkus Reviews