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Being seen : one deafblind woman's fight to end ableism
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2021
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Author Notes
Elsa Sjunneson, seven-time Hugo Award finalist, is a Deafblind speculative fiction writer living in Seattle, Washington. She has been published in CNN Opinion, The Boston Globe , Metro UK , and Tor . Her work has been praised as "eloquence and activism" in lockstep and can be found all over the internet. Elsa writes and edits speculative fiction and nonfiction. She has been a finalist for the Best Fan Writer and Best Semiprozine Hugo Awards, a winner of the D. Franklin Defying Doomsday Award, and a finalist for the Best Game Writing Nebula Award. As an activist for disability rights, she has worked with New Jersey 11th for Change and the New York Disability Pride Parade. And as an educator and public speaker she has presented work at the University of Chicago and The Henry Art Gallery, and taught workshops with Clarion West, Writing the Other, and various Science Fiction conventions.
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Booklist Review
In this sharp and thought-provoking memoir, Sjunneson, who describes herself as Deafblind and queer, shares anecdotes and insights about growing up in an ableist world. She cites biased depictions of disabled people in books, movies, and TV shows and recounts such experiences as listening to people say things like "it fell on deaf ears" and being grabbed by a woman who insists, "Jesus loves you. He'll heal your sight if you accept him as your personal savior." After she miscarries, she is horrified when a doctor offers to sterilize her. Tearing into the history of eugenics in the U.S., she writes that Alexander Graham Bell didn't think the deaf should bear children. Despite the Americans with Disabilities Act, only 25 percent of the New York City subway system is accessible. At 36, she has endured two pandemics: AIDS, which killed her father, and COVID-19. Sjunneson notes that anyone can become disabled or sick in an instant. She asks why insurance doesn't cover hearing aids, and why some places make customers with guide dogs feel unwelcome. An award-winning writer and a powerful activist, Sjunneson challenges conventional wisdom on everything from sex (yes, Deafblind people have it) to blindness (it doesn't usually cause complete darkness). As she writes, "nondisabled people, buckle up."
Kirkus Review
A combination of personal memoir and shrewd examination of the ways in which society and media shape our perceptions of disability. Sjunneson, who identifies as Deafblind, boldly explores her life in the context of living in an ableist society. For most of her life, she tried to hide her disabilities. Her parents raised her as nondisabled, placing her in mainstream classrooms without the use of accommodations or "special needs" services. Based on the feedback she received from those around her at the time, this route seemed the easier path to take. As Sjunneson explains, society wants "us to conform to a standard that makes sense to them." She adds, "the education of a Deafblind child is often about how best to conform to the world." As the author describes her life experiences, she is clearly and rightfully angry. "I have become an expert at lying for abled comfort, and it is exhausting," she writes. "I've been trying to unlearn it." Over time, Sjunneson has come to realize that her upbringing caused her to miss opportunities to interact with communities with similar identities. In attempting to navigate life independently, she has felt put on display and has endured an onslaught of abuse. She is frequently treated as helpless and has been discouraged from engaging in many activities, including having children. Sjunneson blames media tropes for much of society's perception of those who are disabled and spends much of the book investigating the depiction of disabled individuals in film and literature. As the author stresses, she does not want to be pitied or viewed by anyone as an inspiration. "If you are inspired to do anything by this book," she writes, "it should be the work of dismantling the ableist system we live in." A much-needed wake-up call for the nondisabled world. Copyright (c) Kirkus Reviews, used with permission.
Summary
A Deafblind writer and professor explores how the misrepresentation of disability in books, movies, and TV harms both the disabled community and everyone else.

As a Deafblind woman with partial vision in one eye and bilateral hearing aids, Elsa Sjunneson lives at the crossroads of blindness and sight, hearing and deafness--much to the confusion of the world around her. While she cannot see well enough to operate without a guide dog or cane, she can see enough to know when someone is reacting to the visible signs of her blindness and can hear when they're whispering behind her back. And she certainly knows how wrong our one-size-fits-all definitions of disability can be.

As a media studies professor, she's also seen the full range of blind and deaf portrayals on film, and here she deconstructs their impact, following common tropes through horror, romance, and everything in between. Part memoir, part cultural criticism, part history of the Deafblind experience, Being Seen explores how our cultural concept of disability is more myth than fact, and the damage it does to us all.
Table of Contents
Author's Notep. xi
1The Building Blocks of Blindness: Hi, I'm Elsa.p. 1
2We Need to Talk About Helen: Breaking Gibson's Mythologyp. 27
3Language Acquisition Through the Sound Barrier and Other Deafblind Mysteriesp. 40
4My Body and Other Historiesp. 52
5How I Learned to Stop Worrying and Identity Ableism: A Lesson in Radiation Poisoningp. 73
6Your Vision of Blindness Is Impaired: The Monolith of Blindness in Mediap. 96
7How I Learned to Drive, Play with Swords, and Other Things You Shouldn't Do at Homep. 109
8Yes, Virginia, Even Blind Men Can Be Assholes: The Intersection of Disability and Genderp. 128
9The Call Is Coming from Inside the House: Surviving Ableist Violence Through the Lens of Horrorp. 142
10Cripping My Dance Card: Required Reading for People Who Want to Date Me (But My Relatives Should Skip to Chapter 11)p. 158
11Coming Out of the Closet: But Only If It's ADA Compliantp. 182
12There Are No Blind Moms on TV: Disability and Parenthood Stigmap. 183
13I Am Not a Teaching Tool: Medicalizing the Disabled Bodyp. 198
14Welcome to the Cyberpunk Future, It's in My Ears: Disability and Science Fictionp. 210
15We Have Always Thrived in the Castle: Defying Ableism to Become Yourselfp. 225
16Cane in One Hand, Protest Sign in the Other: A View of Police Brutality and Disabilityp. 241
17Hindsight Is 20/20, Except If You're Me and Then It's [REDACTED]p. 256
Acknowledgmentsp. 271
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