Lifelong activist, Seattle author sharing message about ableism across country

When people see Elsa Sjunneson walking in Queen Anne, they may notice her petite frame, vintage dresses, thick glasses, white cane and air of quiet confidence.

They may not know Sjunneson {pronounced “Who-ness-ohn”} is an award-winning author, a bisexual queer woman and disability advocate, a professor, a Marvel comic author, a wife and stepmom to two daughters. She was also diagnosed with deafblindness from birth.

Her debut memoir, “Being Seen: One Deafblind Woman’s Fight to End Ableism,” which was released last year, is nominated for a Hugo Award and a Washington State Book Award. This year’s Hugo Awards were Sept. 4 in Chicago. The Washington State Book Award winners will be announced Sept. 13.

“Being Seen” is part memoir and part social critique, a rebuke of the media’s harmful portrayals of people with disabilities, and an unapologetic call for representation, accessibility and justice. It not only outlines her personal history but the way popular culture has influenced society’s views about disabilities.

Katie Booth, author of “The Invention of Miracles,” described “Being Seen” as a “blend of memoir, media criticism, and cultural critique… 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.”

This has been quite a year for Sjunneson. Newly married and adjusting to life with children, she also collaborated to create a one-hour program with the folks at Radiolab WNYC — an National Public Radio podcast that gets syndicated on radio and just returned from a whirlwind trip to Los Angeles where her documentary short called ELSA debuted at the HollyShorts Film Festival.

“It’s been overwhelming in the best possible way,” Sjunneson said.

Cameron S. Mitchell, who directed ELSA, said they wanted the film to be “an example of how a non-disabled audience can be entertained by these stories and also how a disabled audience can ultimately pull more out of these films on top of that.”

He recalls being nervous the first time he met Sjunneson and was thankful she made him feel comfortable and was willing to share her story and offer a seat at her table.

Ultimately, he said their relationship and the film worked because “Elsa and I have the same agenda: telling the story of disabled people with as much minute detail as possible.”

“We are in the business of finding those things interesting and telling them in a way that is interesting to others,” Mitchell said.

Lulu Miller, the host of Radiolab, said she learned so much working with “Elsa – the ableism slayer” and that Sjunneson “brings awareness everywhere she goes.” Miller first became aware of Sjunneson after reading one of her articles and was so impressed with the writing that she reached out to Sjunneson and said she wanted to work with her.

When she asked Sjunneson if she had anything to pitch, she was intrigued by the idea behind what would become “The Helen Keller Exorcism,” which examines the way Helen Keller has been portrayed in the media, including an uninformed TikTok video claiming that Keller was a fraud.

As a deafblind woman, Sjunneson had spent her lifetime being compared to Helen Keller. She had always bristled at that but was never quite sure why. As an adult, however, she can articulate her discomfort: No two deafblind people are the same.

“Disabilities occur on a spectrum,” she said.

Sjunneson said she was often annoyed by shallow comparisons to Helen Keller, as well as saddened by one-sided narratives of the legendary activist and author. The attacks felt so personal that she got to work as Keller’s greatest defender.

“If you think that deafblind people can’t write books, you can bite me because I have one coming out …” she said.

Sjunneson has trained for that fight all her life with her other activism.

As a small child, she was part of the Stop The Church protest at Saint Patrick’s Cathedral in New York City. Her father was also living with AIDS and trying to raise awareness and educate the public. As a result, Sjunneson’s first appearance at Seattle Pride was at age 6 where she handed out condoms to spectators. She was part of Occupy Wall Street in New York City, nearly arrested at the 2017 ACA Healthcare protests in Washington D.C. and assisted protesters with disabilities at Seattle’s Black Live Matters marches in 2020.

Sjunneson currently works as an accessibility specialist at a small company. She said she sometimes dreams about reaching more people with an organization like Microsoft or even the Bill & Melinda Gates Foundation’s global audience.

Other times, she’d prefer to stay closer to home and use her skills to make Seattle a better place, not just for disabled community, but for everyone.

“My entire life, I’ve tried to make the world a better place for everyone,” Sjunneson said.

Sjunneson will be signing copies of her memoir “Being Seen: One Deafblind Woman’s Fight to End Ableism” Oct. 20 at Elliott Bay Book Company, 1521 10th Ave., Seattle.