Lifelong activist, author from Seattle sharing a message about ableism across the country

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

They might not know that Sjunneson {pronounced “Who-ness-ohn”} is an award-winning author, bisexual queer woman and disability advocate, teacher, Marvel comics writer, wife and step- mother of two daughters. She was also diagnosed as deafblind from birth.

Her first memoir, “Being Seen: One Deafblind Woman’s Fight to End Ableism,” which was published last year, is nominated for a Hugo Award and a Washington State Book Award. This year’s Hugo Awards took place on September 4 in Chicago. Washington State Book Award winners will be announced on September 13.

“Being Seen” is both memory and social critique, a rebuke of harmful portrayals of people with disabilities in the media and an unapologetic call for representation, accessibility and justice. He describes not only his personal story, but how popular culture has influenced society’s views on disabilities.

Katie Booth, author of “The Invention of Miracles,” described “Being Seen” as a “mixture of memoir, media criticism, and cultural critique…both vulnerable and daring. It covers Sjunneson’s particular experiences of everything, from sword fighting to protest, and turns to the media to trace how images of disability in America often contrast starkly with lived experience.

It’s been quite a year for Sjunneson. Newly married and adjusting to life with children, she also collaborated to create an hour-long program with the folks at Radiolab WNYC – a National Public Radio podcast that is syndicated to radio and just got back from home. whirlwind trip to Los Angeles where her documentary short called ELSA debuted at the HollyShorts Film Festival.

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

Cameron S. Mitchell, who directed ELSA, said he wanted the film to be “an example of how able-bodied audiences can be entertained by these stories and also how disabled audiences can ultimately get the most out of these movies on top of that.”

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

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

“Our job is to find these interesting things and tell them in a way that is interesting to other people,” Mitchell said.

Lulu Miller, the host of Radiolab, said she learned so much working with “Elsa – the Abletic Killer” and that Sjunneson “brings awareness wherever she goes”. Miller first became aware of Sjunneson after reading one of her articles and was so impressed with the writing that she contacted Sjunneson and told her she wanted to work with her.

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

As a deafblind woman, Sjunneson had spent her life being compared to Helen Keller. She had always bristled at that but had never really known why. As an adult, however, she can express her discomfort: No two deafblind people are alike.

“Disabilities occur on a spectrum,” she said.

Sjunneson said she was often annoyed by superficial comparisons to Helen Keller, as well as saddened by the legendary activist and author’s one-sided accounts. The attacks were so personal that she went to work as Keller’s biggest defender.

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

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

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

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

Other times, she preferred to stay closer to home and use her skills to make Seattle a better place, not just for the disability community, but for everyone.

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

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

Lola R. McClure