A deafblind writer and professor explores how the misrepresentation of disability in books, movies, and TV harms both the disabled community and everyone else.
As a deafblind woman with partial vision in one eye and bilateral hearing aids, Elsa Sjunneson lives at the crossroads of blindness and sight, hearing and deafness—much to the confusion of the world around her. While she cannot see well enough to operate without a guide dog or cane, she can see enough to know when someone is reacting to the visible signs of her blindness and can hear when they’re whispering behind her back. And she certainly knows how wrong our one-size-fits-all definitions of disability can be.
As a media studies professor, she’s also seen the full range of blind and deaf portrayals on film, and here she deconstructs their impact, following common tropes through horror, romance, and everything in between. Part memoir, part cultural criticism, part history of the deafblind experience, Being Seen explores how our cultural concept of disability is more myth than fact, and the damage it does to us all.
[this book is essential and instructive! — cw]
I have always known that I was occupying a space that is considered impossible. The collective imagination of what is possible in a non-disabled society is narrow, and I live in unimagined space.
Here, I’ll give you an example:
There are no books about blind women for kids that aren’t about Helen Keller. Okay, there’s one. But it’s about a blind mom.
When I met my partner’s kids for the first time, I wanted to bring them a book to explain a little about why my eye is the way it is. Why I use a cane. Why I wear hearing aids. There was nothing in the bookstore for me to bring them. No gift that would ease my entry into their world.
At my local bookstore a few months later, I mentioned that I hadn’t found anything – and that my experience of kids books had been somewhat challenging. They all had small font. They weren’t written for non-sighted people to read.
These things belied an absence in the imagination of publishers, a space dominated by the non-disabled – but that’s only one place. The fact is there are blank spaces where disabled people should be everywhere you care to look.
When I was writing Being Seen, I was looking at the spaces where blind people and Deaf people were. Where we were being misrepresented, where our stories were being told poorly. I was deliberately exposing myself to the many bad choices that writers, filmmakers and artists have made when they have displayed disabled bodies on the page, stage and screen.
But it is the absence that I want to talk about now.
It isn’t just that there aren’t children’s books about blind people. It’s that there aren’t children’s books being printed for the blind people in their lives to read to them.
It isn’t just that as a kid I was the only Deafblind student in my classroom or school – it’s that there was an absence of other kids like me at all.
Non-disabled society doesn’t want to see us. It wants us to go away. The way that we are told this is through the lack of presence that I experience in my day to day life.
It is the absence of disabled women that is killing us. Absence in teaching professions, in medical professions, in leadership roles. Absence in stories that matter to us. Absence in representation.
The blanked out space where we should be is horrifying.
This is one of the carryovers of the era of institutionalization. In 1985 my parents were told to give me over to one, and to have another child. Would I be writing Being Seen if I had been placed in one of those places? No. I would be yet another blank spot in the world that should have been.
Being Seen is not merely about what blind and Deaf women are depicted as – who the world assumes we are as disabled women. It is about how the absence of us in the world’s imagination is killing us – it is a symptom of the sickness that our society has: ableism.
Being Seen isn’t just a book. It’s not only a piece of text that you can read. It’s an ask.
I’m asking every non-disabled person who reads it to take stock of what they believe about blindness and Deafness. I’m asking every sighted disabled person to dismantle their own misunderstandings.
I am hoping that this book helps me be better seen by the world that I live in.
Elsa Sjunneson is a Deafblind author and editor living in Seattle, Washington. Her fiction and nonfiction writing has been praised as “eloquence and activism in lockstep” and has been published in dozens of venues around the world. She has been a Hugo Award finalist seven times, and has won Hugo, Aurora, and BFA awards for her editorial work. When she isn’t writing, Sjunneson works to dismantle structural ableism and rebuild community support for disabled people everywhere.