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

Unabridged Selections

Author Alice Wong
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One in five people in the United States lives with a disability. Some disabilities are visible, others less apparent—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 this urgent, galvanizing collection of contemporary essays by disabled people.

From original pieces by up-and-coming authors like Keah Brown and Haben Girma, to blog posts, manifestos, eulogies, Congressional testimonies, and beyond: this anthology gives a glimpse into the rich complexity of the disabled experience, highlighting the passions, talents, and everyday lives of this community. It invites listeners to question their own understandings. It celebrates and documents disability culture in the now. It looks to the future and the past with hope and love.
© Eddie Hernandez Photography
Alice Wong is a disabled activist, writer, and editor based in San Francisco, California. She is the founder and director of the Disability Visibility Project, an online community dedicated to creating, sharing, and amplifying disability media and culture. 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 View titles by Alice Wong

Introduction by Alice Wong

PART 1: BEING

Unspeakable Conversations
Harriet McBryde Johnson

For Ki’tay D. Davidson, Who Loves Us
Talila A. Lewis

If You Can’t Fast, Give
Maysoon Zayid

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

The Erasure of Indigenous People in Chronic Illness
Jen Deerinwater

When You Are Waiting to Be Healed
June Eric-Udorie

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

Common Cyborg
Jillian Weise

I’m Tired of Chasing a Cure
Liz Moore

PART 2: BECOMING

We Can’t Go Back
Ricardo T. Thornton Sr.

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

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

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

Canfei to Canji: The Freedom of Being Loud
Sandy Ho

Nurturing Black Disabled Joy
Keah Brown

Last but Not Least — Embracing Asexuality
Keshia Scott 

Imposter Syndrome and Parenting with a Disability
Jessica Slice  

How to Make a Paper Crane from Rage
Elsa Sjunneson

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

PART 3: DOING

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

The Antiabortion Bill You Aren’t Hearing About
Rebecca Cokley

So. Not. Broken.
Alice Sheppard

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

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

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

Six Ways of Looking at Crip Time
Ellen Samuels

Lost Cause
Reyma McCoy McDeid  

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

Gaining Power through Communication Access
Lateef McLeod

PART 4: CONNECTING

The Fearless Benjamin Lay: Activist, Abolitionist, Dwarf Person
Eugene Grant

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

Disability Solidarity: Completing the “Vision for Black Lives”
Harriet Tubman Collective

Time’s Up for Me, Too
Karolyn Gehrig  

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

Love Means Never Having to Say . . . Anything
Jamison Hill  

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

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

 

About the Editor

About the Contributors

Further Reading

Educator Guide for Disability Visibility: First-Person Stories from the Twenty-First Century

Classroom-based guides appropriate for schools and colleges provide pre-reading and classroom activities, discussion questions connected to the curriculum, further reading, and resources.

(Please note: the guide displayed here is the most recently uploaded version; while unlikely, any page citation discrepancies between the guide and book is likely due to pagination differences between a book’s different formats.)

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

link

About

One in five people in the United States lives with a disability. Some disabilities are visible, others less apparent—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 this urgent, galvanizing collection of contemporary essays by disabled people.

From original pieces by up-and-coming authors like Keah Brown and Haben Girma, to blog posts, manifestos, eulogies, Congressional testimonies, and beyond: this anthology gives a glimpse into the rich complexity of the disabled experience, highlighting the passions, talents, and everyday lives of this community. It invites listeners to question their own understandings. It celebrates and documents disability culture in the now. It looks to the future and the past with hope and love.

Author

© Eddie Hernandez Photography
Alice Wong is a disabled activist, writer, and editor based in San Francisco, California. She is the founder and director of the Disability Visibility Project, an online community dedicated to creating, sharing, and amplifying disability media and culture. 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 View titles by Alice Wong

Table of Contents

Introduction by Alice Wong

PART 1: BEING

Unspeakable Conversations
Harriet McBryde Johnson

For Ki’tay D. Davidson, Who Loves Us
Talila A. Lewis

If You Can’t Fast, Give
Maysoon Zayid

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

The Erasure of Indigenous People in Chronic Illness
Jen Deerinwater

When You Are Waiting to Be Healed
June Eric-Udorie

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

Common Cyborg
Jillian Weise

I’m Tired of Chasing a Cure
Liz Moore

PART 2: BECOMING

We Can’t Go Back
Ricardo T. Thornton Sr.

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

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

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

Canfei to Canji: The Freedom of Being Loud
Sandy Ho

Nurturing Black Disabled Joy
Keah Brown

Last but Not Least — Embracing Asexuality
Keshia Scott 

Imposter Syndrome and Parenting with a Disability
Jessica Slice  

How to Make a Paper Crane from Rage
Elsa Sjunneson

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

PART 3: DOING

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

The Antiabortion Bill You Aren’t Hearing About
Rebecca Cokley

So. Not. Broken.
Alice Sheppard

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

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

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

Six Ways of Looking at Crip Time
Ellen Samuels

Lost Cause
Reyma McCoy McDeid  

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

Gaining Power through Communication Access
Lateef McLeod

PART 4: CONNECTING

The Fearless Benjamin Lay: Activist, Abolitionist, Dwarf Person
Eugene Grant

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

Disability Solidarity: Completing the “Vision for Black Lives”
Harriet Tubman Collective

Time’s Up for Me, Too
Karolyn Gehrig  

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

Love Means Never Having to Say . . . Anything
Jamison Hill  

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

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

 

About the Editor

About the Contributors

Further Reading

Guides

Educator Guide for Disability Visibility: First-Person Stories from the Twenty-First Century

Classroom-based guides appropriate for schools and colleges provide pre-reading and classroom activities, discussion questions connected to the curriculum, further reading, and resources.

(Please note: the guide displayed here is the most recently uploaded version; while unlikely, any page citation discrepancies between the guide and book is likely due to pagination differences between a book’s different formats.)

Praise

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

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