Most Influential, Arts: Elsa Sjunneson
The award-winning deafblind author and media critic is fighting ableism with an unapologetic call for representation in the media.
By Rachel Gallaher March 14, 2023
Elsa Sjunneson is one of Seattle’s 25 most influential people reshaping our region. #mostinfluential
Deafblind author and activist Elsa Sjunneson always knew she would be a writer. As a child growing up in Belltown, she spent hours of free time crafting stories and making “books” from stapled-together pieces of loose-leaf paper.
“Growing up, I knew (local children’s book author) Michele Clise,” Sjunneson says. “I used to go over to her apartment, and she’d sit me down at a desk with this little typewriter and I’d work on things.” Like most literarily inclined children, when Sjunneson wasn’t writing, she had her nose in a book. “I remember being tiny and going over to the M Coy bookstore on Pike Street,” she recalls. “I grew up as one of those reading, writing Seattle kids.”
Sjunneson has been deafblind since birth — she has partial vision in one eye and bilateral hearing aids — but was raised in a household where she was often treated as though she did not have a disability. Sjunneson’s father, who took her to protests when she was a small child, was an activist during the height of the AIDS epidemic. She credits him for inspiring her in her disability rights advocacy work, which includes being an active, engaged member of society who doesn’t shrink herself or go out of her way to conform to the expectations of the abled world.
“There is a burning fire in my chest every single day,” Sjunneson says in a recently released short film about her, “Elsa,” which is part of PBS’s American Masters series. “It has been there since I was a little girl, and I think that that rage comes from existing in a world that wants to define me constantly based on its own decisions of who I should be.”
It takes a long list to describe Sjunneson’s interests — she’s a mother, educator, speculative fiction writer, fencer, hiker, swing dancer and she’s wickedly funny to boot. She has won Hugo, Aurora, and British Fantasy awards and is the first deafblind woman to win a Hugo, one of the most highly regarded literary awards for science fiction and fantasy works.
Last year, the multi-hyphenate Seattleite published “Being Seen: One Deafblind Woman’s Fight to End Ableism” (Tiller Press). It won a Washington State Book Award. The memoir, which looks at Sjunneson’s life experiences, delves into the topic of misrepresentation of disability in the media and how those misrepresentations harm the disabled community and society at large.
“It was necessary to write this book,” she says, “because so much of our media are teaching people what disability is looking like, and a lot of that perpetuates harmful, incorrect stereotypes.”
As is true within any community, no two disabled people are the same. When an insidious trope — such as a blind person stumbling around bumping into everything — is used over and over, it becomes the accepted view of how blind people operate in the world. Sjunneson is fighting to change these misrepresentations, get in the writer’s room (she’s done work for Marvel) and provide resources through which people can educate themselves.
“We need more disabled creators in the media,” she says, “but it is the viewer’s responsibility to think through what they are seeing and not just aimlessly consume. It is their job to ask questions and go to the source. Start by asking, ‘Have I ever actually talked to a blind person?’”