Being Seen: One Deafblind Woman's Fight to End Ableism

by Elsa Sjunneson

Overview

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.

Product Details

ISBN-13:	9781982152376
Publisher:	S&S/Simon Element
Publication date:	10/26/2021
Pages:	288
Product dimensions:	9.00(w) x 6.30(h) x 1.10(d)

About the Author

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.

Table of Contents

Author's Note xi

1 The Building Blocks of Blindness: Hi, I'm Elsa. 1

2 We Need to Talk About Helen:

Breaking Gibson's Mythology 27

3 Language Acquisition Through the Sound Barrier and Other Deafblind Mysteries 40

4 My Body and Other Histories 52

5 How I Learned to Stop Worrying and Identity Ableism: A Lesson in Radiation Poisoning 73

6 Your Vision of Blindness Is Impaired: The Monolith of Blindness in Media 96

7 How I Learned to Drive, Play with Swords, and Other Things You Shouldn't Do at Home 109

8 Yes, Virginia, Even Blind Men Can Be Assholes:

The Intersection of Disability and Gender 128

9 The Call Is Coming from Inside the House:

Surviving Ableist Violence Through the Lens of Horror 142

10 Gripping My Dance Card:

Required Reading for People Who Want to Date Me (But My Relatives Should Skip to Chapter 11) 158

11 Coming Out of the Closet:

But Only If It's ADA Compliant 182

12 There Are No Blind Moms on TV:

Disability and Parenthood Stigma 183

13 I Am Not a Teaching Tool:

Medicalizing the Disabled Body 198

14 Welcome to the Cyberpunk Future, It's in My Ears:

Disability and Science Fiction 210

15 We Have Always Thrived in the Castle:

Defying Ableism to Become Yourself 225

16 Cane in One Hand, Protest Sign in the Other:

A View of Police Brutality and Disability 241

17 Hindsight Is 20/20, Except If You're Me and Then It's [REDACTED] 256

Acknowledgments 271

Editorial Reviews

2021-08-18
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.

Kirkus Reviews

Being Seen is a sharp, necessary book. Sjunneson's clarity of thought and entertaining prose illuminate her life and our world. A powerful and resonant reading experience.” —Kat Howard, Alex Award-winning author of An Unkindness of Magicians

“With sharpened words aimed squarely at a cultural image that marginalizes disabled women, Elsa Sjunneson is an emerging icon. Being Seen is her unkindest cut; sparing no one from the frank truth of her life as a Deafblind woman and filleting the intersections of identity with her trademark incisive logic and vulnerable memoir. This book will leave scars.”—Meg Elison, author of Big Girl

“A riotous blend of memoir and cultural criticism that defies expectations on nearly every page. Being Seen persuasively argues that it is not only the disabled body that must adapt to the world but also the world that must adapt around the disabled body.” —M. Leona Godin, author of There Plant Eyes: A Personal and Cultural History of Blindness

“A blend of memoir, media criticism, and cultural critique, Being Seen is both vulnerable and bold. It covers Sjunneson’s particular experiences of everything from sword fighting to protesting, and looks to media to trace the ways the images of disability in America often stand in stark contrast to lived experience. Most important, it is a challenge: an unflinching demand for representation, accessibility, and justice.”—Katie Booth, Author of The Invention of Miracles

“Engaging, unflinching, and at times intentionally uncomfortable, Being Seen is a call to action cleverly disguised as a book.”—Marieke Nijkamp, bestselling author and editor of Unbroken: 13 Stories Starring Disabled Teens

"Elsa Sjunneson's tremendous Being Seen is a must read. I delighted in the footnotes, the shifts from public disability mythologies to what IS, and on both public & personal levels, the reality. So glad this exists." —Fran Wilde, double-Nebula award winning author of Updraft and Riverland

“Sjunneson is a brilliant mixture of scholar, activist, and essayist, who weaves her powerful experiences together with deep analysis of culture and media; a read as engrossing as it is chilling.” —Ada Palmer, Historian and Award-winning Author of Too Like the Lightning.



“A combination of personal memoir and shrewd examination of the ways in which society and media shape our perceptions of disability. A much-needed wake-up call for the nondisabled world.” —Kirkus Reviews

"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." "—Karen Springen, Booklist

From the Publisher