Elsa Sjunneson is the author of the new memoir Being Seen: One Deafblind Woman's Fight to End Ableism. She also has written the novel Assassin's Creed Valhalla: Sword of the White Horse, and her work has appeared in a variety of publications, including The Boston Globe and Uncanny Magazine.
Q: What inspired you to write Being Seen?
A: I had been writing media criticism of the representation of blind women in
film for almost a decade, and I realized that all my essays were coming around
and circling a critical point about how disabled women are seen.
Sometimes, the story you want to tell, the point you want to make is bigger than a single essay. So it was time to write a book!
Q: The Kirkus Review of the book says, in part, “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.” What do you think of that assessment, and can you say more about the role of the media in creating perceptions of disability?
A: It’s an accurate assessment. If the only disabled person you’ve ever seen is actually a non-disabled person pretending to be disabled, your perception of disability is going to be terrible.
I have met a lot of people who have never met a blind person before me, for example, but they’ve seen plenty on TV. That means that the TV shows they watched have colored and informed their view of my disability.
That’s not a great way to learn about how other people experience the world, if what you’re seeing isn’t even a real blind person on screen.
Q: In the book, you write, “A lot of these disability memoirs are about making nondisabled people feel inspired by a disabled person’s life’s journey. This is not that book. If you walk away inspired, I’ll feel that I haven’t done my job correctly.” Why is that, and what do you hope people take away from the book?
A: When I, or my work, inspire someone, they don’t really have to take action. They can sit back and be in awe that a person they did not before perceive as capable, is extremely capable. And then they’re done.
I ask people to engage with my work on a deeper level. To move past being surprised or awed that I can live my life, and to undo the ableism that led them to believe I couldn’t do things in the first place.
I’m only that inspiring if you thought I couldn’t cross the street by myself to begin with. I’m a mom. I have a job. A family. My life is pretty ordinary unless you think I couldn’t be this person.
Q: You also write, “What’s weird about this book is that while I wrote it, my world changed so much and the book changed me, too.” What impact did writing this book have on you?
A: Choosing what to share, how to share it, and when not to share was a real challenge for me. I have always tried to be an open book, but being an open book with a publisher like Simon & Schuster is very different from being an open book in a small science fiction magazine.
I learned a lot about who I wanted to be in public, and what stories felt right and important to tell, even when they were hard. I have certainty become more private sine the book’s publication as well.
Q: What are you working on now?
A: Short stories, mostly. I am waiting for my next big project to find a home! I am always cooking several things on the back burner, though, so you never know what I might cook up next!
Q: Anything else we should know?
A: If you’re raising a Deaf, blind or Deafblind kid, you have so many more
resources than were available to me and my parents as a child. It is always
possible to give them every adaptive support and still not have them miss out
on the childhood you expected for them if they were non-disabled.
--Interview with Deborah Kalb
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