Being Seen: One Deafblind Woman’s Fight to End Ableism (Elsa Sjunneson)

Reviewed by Elizabeth L. Sammons

From 40 years distance and a continent away, a question from my exchange year host mother returned as I absorbed Elsa Sjunneson’s Being Seen: “When are you going to learn you’re a pretty girl, just like the rest?”

Sjunneson’s youthful, mixed-genre manifesto swings between defending the right to live in the world as someone with sensory differences, and pursuit of that illusive “I’m just like you.” While occasionally the snap of her snark distracts from substance, the prose lines clear-cut avenues that will be of interest to readers ranging from philosophers to pop culture aficionados.

Combining personal history, historical reference, and a plethora of mass media examples as a creative writer and media studies professor, Sjunneson constructs a diorama of life both inside and outside the mainstream. Seventeen chapters packed with spicy ideas remind me of dim sum—enough items wheeling around to stimulate my appetite, without quite enough to find each small plate satisfying.

One tantalizing example is “passing,” the learned skill of blending into the able-bodied mainstream, at will. After a few paragraphs worth a volume, many readers with lived disability may find Sjunneson’s strategic mapping of “to pass or not to pass” decisions too glib for comfort, while non-disabled readers may presume without context, “Yes, but I see through your game.” Early on, Sjunneson voices the presumption, “I have known for my entire life that I am a target.” While this book primarily addresses the able-bodied world, these readers remain the antagonists, the spectators, the onlookers.

Following several chapters of bodily and mental introduction, Sjunneson turns to the subject of her expertise and exasperation. From reality shows and medical drama series, to rom-coms, to horror, to Disney, to her beloved fantasy and sci-fi, she breaks down the slings and arrows of outrageous falsehoods dominating popular disability portrayals, along with the sludge of fear and irrationality left in their wake. “Media has power, and these tropes are more than just tropes. They are the building blocks of ableism. They teach audiences how to view disabled bodies—how to laugh at us, how to fear us, how to distrust us,” she writes. But after defining this grim harvest, she makes us smile with a nod to Star Trek: “…‘boldly going where no one has gone before.’ Disabled people are the experts at that.”

Sandwiching her media discussion, Sjunneson raises many points of identity. In addition to her sensory limitations, she claims a malfunctioning heart, queerness, and chronic pain, among other realms of selfhood. Such listings lead to the greatest weakness in both the construction and the content of this narration, the violation of Chekov’s gun rule: if you show the gun early on, you’d better use it later, as Josh Swiller’s riveting The Unheard and Riva Lehrer’s arts memoir Golem Girl reflect in their wealth of intersectional context. However, as the title Being Seen indicates, most of the writer’s focus lodges in the visible, her visual and hearing limitations, perhaps the safer and simpler choice.

A few presumptions lacing this narrative disturbed me, including certain passages fraught with exceptionalism. As one such example, she writes, “I know some of my classmates in middle and high school had learning disabilities, but it isn’t quite the same as needing an accommodation for not being able to see the whiteboard.” Occasionally, Sjunneson seems to be speaking on behalf of other disabled people, as in: “Many nondisabled writers assume (falsely) that disabled readers want to escape their bodies and the realities that they have to live with. We don’t.”

Yet, my joy in discovering this writer’s quick-stroke sweeps of analysis far outweigh my reservations. For example, she notes with persuasive discernment: “Because the queer community was so traumatized by the AIDS pandemic, I think that is part of why the queer community has trouble creating space for disabled bodies.” Addressing the U.S. medical system, she contests: “Disabled bodies are treated as plot points, not only by the medical genre of TV and film but by the actual medical profession itself. The medical system is based on problem-solving, looking at bodies as logic problems, and conditions as things to fix. I call it Diagnosis Capitalism.”

I feel Sjunneson’s self-definition not in her rage with the eugenics, tropes, or inspiration porn she detests (understandably) in current U.S. society, but rather in her mirror image of being. She writes more as an “I’m not,” than the “I Am” she longs for. This is why she finds a kind of salvation in out-front advocacy: “When I stopped trying to behave, and started to throw rocks and break windows, it meant that my disabilities stopped being burdens and also started being a part of who I was….my disabilities started to hurt less.”

Sjunneson’s prose shines brightest when meandering between her deeply personal history and the larger social issues of disability experience, such as this childhood memory: “…conjoined-twin Violet sings during the second number in the show that she wants to be able to walk down the street without notice and without attracting attention, that she wants ‘to be like everyone else / So no one will point and stare.’ It was the first time that I would recognize, out in the world, what I felt in my bones—that all I wanted was to be seen the same way the other children were.”

In her Winter 2021 Wordgathering essay, “Working for Exposure: The Dangerous Costs of Memoir Writing,” the author laments: “I feel a lot like the Crane Wife these days” (the mythical bird who sold her feathers to provide for the human man she loved), the shrinking plumage of her woven memories creating her livelihood.” I found this assertion difficult to accept, oh seven-time Hugo Award finalist, oh victor through observation of that very society you both mirror and mock. Though your book begins and ends acknowledging your own mortality, something tells me while you yet have breath, time will let us accompany you, not into deplumed drudgery, but along many flights of further fascination.

Title: Being Seen: One Deafblind Woman’s Fight to End Ableism
Author: Elsa Sjunneson
Publisher: Simon & Schuster
Date: 2021

Read Elizabeth L. Sammons’ Excerpt, “Kazakhstan’s Soviet Blindness Community Remembered,” in this issue of Wordgathering.

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About the Reviewer

Doctors told Elizabeth Sammons’ parents to institutionalize her at birth; she was blind. Instead, they raised her with a sense of self-respect and wonder, along with a vast selection of books. After graduating with a Master’s degree in journalism from The Ohio State University, she worked with nonprofits and schools in Central Asia, Siberia, and Europe, including service with the Peace Corps. Returning to the U.S. in 2000, Elizabeth pursued a federal and state government career until 2018, when she gave in to living life full-time as a writing artist and an international/disability advocate. Sammons’ writings and research have been featured in Ethics in Journalism, Plough Quarterly, The Columbus Dispatch, Geohistory, and Vision Aware, among others. Her first novel, The Lyra and the Cross, was published in 2019.