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Disability visibility : first-person stories from the twenty-first century

2020

Title:	Disability visibility : first-person stories from the twenty-first century / edited by Alice Wong.
Summary:	"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." 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"-- Provided by publisher.
Format:	Book
Description:	xxii, 309 pages ; 21 cm
Subjects:	People with disabilities -- United States -- Biography. People with disabilities -- United States -- Social conditions.
Other Author:	Wong, Alice, 1974- editor.
Publisher, Date:	New York : Vintage Books, a division of Penguin Random House LLC, 2020.
Notes:	"A Vintage Books original"--Title page verso.
LCCN:	2019052398
ISBN:	9781984899422 (pbk.) 1984899422 (pbk.)
System Availability:	2
# System items in:	2
Current Holds:	0

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Author Notes

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.

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Trade Reviews

Library Journal Review

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

Booklist Review

This collection of essays is a manifesto generated by passionate, determined individuals with disabilities who are trying to survive and thrive in our ableist society. Editor Wong is the director of the Disability Visibility Project, an online community dedicated to supporting and amplifying disability culture. Tired of being underrepresented in the media and marginalized by society, 37 activists have documented the social, legal, ethical, and medical challenges they face in their struggles for equitable treatment, recognition, and acceptance. The contributors include a pediatric neurologist, an astronomer, community activists, civil rights lawyers, artists and performers, and writers and journalists. Their articles encompass political statements, personal histories, poetry, dictated accounts, and even a eulogy. They document myriad incidents of ingrained and systemic prejudice and injustice. Brutally honest and sometimes difficult to read, these compelling testimonials tell of casual cruelty, isolation, condescending treatment, pity, discrimination, physical abuse, and sexual exploitation. This is a wake-up call and a justified demand for greater visibility for all members of our communities, and it deserves a wide audience.

Kirkus Review

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. Copyright (c) Kirkus Reviews, used with permission.

Summary

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.

Table of Contents

	Introduction Alice Wong	p. xv
Part 1	Being
	Unspeakable Conversations Harriet McBryde Johnson	p. 3
	For Ki'tay D. Davidson, Who loves Us Talila A. Lewis	p. 28
	If You Can't Fast, Give Maysoon Zayid	p. 36
	There's a Mathematical Equation That Proves I'm Ugly-Or So I Learned in My Seventh-Grade Art Class Ariel Henley	p. 39
	The Erasure of Indigenous People in Chronic Illness Jen Deerinwater	p. 47
	When You Are Waiting to Be Healed June Eric-Udorie	p. 53
	The Isolation of Being Deaf in Prison Jeremy Woody, as told to Christie Thompson	p. 59
	Common Cyborg Jillian Weise	p. 63
	I'm Tired of Chasing a Cure Liz Moore	p. 75
Part 2	Becoming
	We Can't Go Back Ricardo T. Thornton Sr.	p. 85
	Radical Visibility: A Disabled Queer Clothing Reform Movement Manifesto Sky Cubacub	p. 90
	Guide Dogs Don't Lead Blind People. We Wander as One. Haben Girma	p. 101
	Taking Charge of My Story as a Cancer Patient at the Hospital Where I Work Diana Cejas	p. 104
	Canfei to Canji: The Freedom of Being Loud Sandy Ho	p. 112
	Nurturing Black Disabled Joy Keah Brown	p. 117
	Last but Not Least-Embracing Asexuality Keshia Scott	p. 121
	Imposter Syndrome and Parenting with a Disability Jessica Slice	p. 129
	How to Make a Paper Crane from Rage Eisa Sjunneson	p. 134
	Selma Blair Became a Disabled Icon Overnight. Here's Why We Need More Stories Like Hers. Zipporah Arielle	p. 141
Part 3	Doing
	Why My Novel Is Dedicated to My Disabled Friend Maddy A. H. Reaume	p. 149
	The Antiabortion Bill You Aren't Hearing About Rebecca Cokley	p. 159
	So. Not. Broken. Alice Sheppard	p. 164
	How a Blind Astronomer Found a Way to Hear the Stars Wanda Díaz-Merced	p. 168
	Incontinence Is a Public Health Issue-And We Need to Talk About It Mari Ramsawakh	p. 174
	Falling/Burning: Hannah Gadsby, Nanette, and Being a Bipolar Creator Shoshana Kessock	p. 179
	Six Ways of Looking at Crip Time Ellen Samuels	p. 189
	Lost Cause Reyma McCoy McDeid	p. 197
	On NYC's Paratransit, Fighting for Safety, Respect, and Human Dignity Britney Wilson	p. 205
	Gaining Power through Communication Access Lateef McLeod	p. 220
Part 4	Connecting
	The Fearkss Benjamin Lay: Activist, Abolitionist, Dwarf Person Eugene Grant	p. 229
	To Survive Climate Catastrophe, Look to Queer and Disabled Folks Patty Berne, as told to and edited by Vanessa Raditz	p. 232
	Disability Solidarity: Completing the "Vision for Black Lives" Harriet Tubman Collective	p. 236
	Time's Up for Me, Too Karolyn Gehrig	p. 243
	Still Dreaming Wild Disability Justice Dreams at the End of the World Leah Lakshmi Piepzna-Samarasinha	p. 250
	Love Means Never Having to Say ... Anything Jamison Hill	p. 262
	On the Ancestral Plane: Crip Hand-Me-Downs and the Legacy of Our Movements Stacey Milbern	p. 267
	The Beauty of Spaces Created for and by Disabled People s.e. smith	p. 271
	About the Editor	p. 277
	About the Contributors	p. 279
	Further Reading	p. 293
	Permission Acknowledgments	p. 305

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