Being Seen

One Deafblind Woman's Fight to End Ableism

Elsa Sjunneson

• Publisher: S&S/Simon Element
• Year: 2021
• ISBN:
  9781982152413
• Topic: Social Sciences
• Subtopic: Social Science Biographies
• Index: Social Sciences

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.

1. The Building Blocks of Blindness

Hi, I’m Elsa.

Everyone has always assumed that I will die young. At this point in my midthirties, I’m no longer convinced they’re right. I spent a long time imagining how I was going to die. It was always an accident. The people who love me probably think about it more than I do. I see it in their faces.

I understand. They’re not wishing for my death; in fact, they’re dreading it. But as anybody who cares about me knows, I’m going to continue running off and living my life exactly the way I want to, and I won’t let something as benign as the body I was born in stop me.

I get portents of my death every once in a while. Maybe this time I won’t notice when a car turns on a red. Maybe I won’t hear someone shouting to watch where I’m going. I’ve taken harrowing falls, narrowly escaped speeding cars, gone swimming where I shouldn’t. I’ve attempted to live my life like a nondisabled person, sometimes to a dangerous degree. There are things that stop me, of course, but I don’t wake up in the morning wondering what’s going to kill me because of my sight or hearing that day. I’ve moved fully into the realm of the living.

That’s because I’ve learned how to survive in a body that wasn’t intended for the world I live in. I’m certain of almost every step I take, certain that my adaptive aids will carry me through. Until 2020, when I stopped being able to control my environment in the ways that keep me alive. When all my adaptive aids failed in the span of four weeks. When I had to reconfigure my understanding of my body.

It was four weeks into the shelter-in-place order in Seattle, Washington, when one of my hearing aids failed me. The important one, of course. Three days before that, my guide dog broke his toe while playing with the neighbor dog. I had recently moved back to the Central District, where I had grown up, so at least I knew the neighborhood, but it wasn’t the house I’d lived in before.

For the first time in a decade, I was actively Deafblind again. Stripped bare of my adaptive aids, I had to start asking myself some difficult questions. How comfortable was I walking with a white cane to the audiologist without working hearing aids, instead of asking my mom or my neighbor to take me? Could I cross the street by myself, without my dog?

I had to remember what it was like to be Deafblind without assistance, and I quickly realized that it was the perfect time to remember what it is that makes me a Deafblind person at all.

It is the measure of distance, between me and the nondisabled people who surround me, who sharply define the boundaries of my world. Not my body. Not merely nondisabled society at large, but individuals who make specific decisions that leave me stranded in their wake.

It is the fact that I cannot effectively communicate when someone is across a silent room, with no audible distractions, without a hearing aid. Even with aids, add a plexiglass barrier between me and a cashier (who also happens to be wearing a mask) and I’m sunk.

It is the fact that without a guide dog, I feel disconnected, my body seeking anchors. I can still see, but perception is not the same thing as seeing sharply into the distance.

But it doesn’t have to be that way. I feel that way because of what I have been told is expected of my body and what the norms are for human interaction and ability.

And, most important, because of what people expect when they hear the word “Deafblind.”

Hi. My name is Elsa R. Sjunneson. I’m Deafblind.

What do you think being Deafblind means?

If you’re a nondisabled, fully sighted, fully hearing person, you may have some very specific ideas of what Deafblindness looks like. Perhaps you’ve read about Helen Keller, the most famous historical example. Or you might have read Haben Girma’s book. Or maybe you’ve actually heard of Laura Bridgman.

If you’re disabled (either invisibly or visibly, via physical or mental or other means), you may also have some perceptions that need altering. After all, the disability community is not a monolith.¹

If you have met someone who is Deafblind, I want you to think about what they looked like, what adaptive devices they used, how they adapted to the world around them.

If you haven’t, I want you to imagine it.²

Can’t picture it? Can’t picture me? Let’s try an exercise of the imagination.

What does a blind person look like to you? Do they wear dark glasses? Carry a white cane or have a guide dog? Are their eye sockets empty, or does a cloudy cataracted pair of eyes live within their ocular sphere? Do you know? Are they wearing sunglasses or prescription lenses?

What does a D/deaf person look like? Can you even tell if they’re D/deaf until they turn up their hearing aids, or until they sign?

Okay, now flip to the back of this book. Take a look at the headshot on the back cover. I’ll wait.

Do I look Deafblind to you?

I know.

I don’t, do I?

I look at the camera, not away from it. I have one gray eye with a pupil and the other is clouded by a cataract, aqua blue and white. I wear glasses, they’re stylish and frame my face well.³ My hearing aids are pink and gray and don’t hide behind my hair. My makeup is done—I’m wearing deep pink lipstick, a white and black striped silk blouse and leather vest. Vintage chic, and yes I styled myself.

I get it. To you this doesn’t look like a Deafblind person. I’m often stopped in the street, told that I look great “for a blind person.” I’m often asked if my caretakers have dressed me (my ex-husband Gatsby even received compliments for it!).

The problem is that no one really knows what disability looks like, because you’d have to be able to identify a million different degrees of blindness or deafness at first glance. And that would require magic, or at least technology far beyond what we have today.

Instead, you have to trust people—and for some reason, nondisabled people don’t seem inclined to trust the disabled. Whether it is suspicion about how disabled we really are, or doubt about whether we are “safe” to be out by ourselves, many of the interactions between disabled people and the nondisabled public are deeply fraught.

People are afraid of disability. In 2014, Star Trek alumnus George Takei posted a meme on his wildly popular Facebook fan page. It was an image of a wheelchair user standing up to grab a bottle of liquor from a high shelf. The caption read: “There has been a miracle in the alcohol isle [sic].”⁴ Takei was instantly called out by disability activists across the internet, reminding him that disabilities are not a monolith, that there are degrees of difference.

It’s supposed to be funny, but underneath the humor, there’s a very real danger. Nondisabled people frequently appoint themselves the disability police, approaching strangers who don’t look disabled enough, questioning whether they really need that parking placard, that wheelchair, that guide dog.

This is why I need to get you on the same page with me before we can move forward. When I share my story you’re going to need to trust me and, more important, believe me.

So we’ve talked about what you think a Deafblind person looks like. Now, what do you think a Deafblind person can do? Does your list include the following?

• Skiing double black diamonds.
• Hiking Arthur’s Seat.
• Fencing saber.
• Competing in Lindy Hop.
• Winning literary awards.
• Independently traveling internationally.
• Moving across the country alone.
• Being married.
• Speaking multiple languages.
• Using footnotes with indiscriminate glee.⁵

If you didn’t think of any of those things, think again. Because I’ve done all of them. I speak five languages.⁶ I’ve been married. I’ve moved across countries, won multiple international awards, and even traveled abroad by myself (the guide dog doesn’t count because he’s an adaptive aid⁷).

Many would perceive blind and deaf people as lost and alone, set adrift by their disabilities, unable to fully participate in the world at large.

And there is some truth to it. We are often left out. But that’s not because we cannot participate. It’s because society has chosen not to adapt to us, to our ways of living, communicating, and adapting.

It’s not that I’ve chosen to be adrift or even want to be. It’s that society presents me with a binary choice: adapt the way we expect you to, look and dress and behave accordingly, or be cut out. If I’m seen as too different, I risk losing access to the things I need to live.

That’s why, when you look at me, you have trouble seeing a Deafblind person. You’ve been misled.

For example, you’ve been told that Deafblind people do not speak orally and that we are only able to communicate via interpreters or through sign language. But here I am, a Deafblind woman who rarely, if ever, stops talking. A Deafblind woman who can perform Shakespeare and who holds National Forensic League⁸ titles. Not only can I talk, I can talk circles around some very smart people. With a smile on my face.

You’ve been told that Deafblind people cannot live alone, but here I am in a house by myself. You’ve been told we cannot be educated, but I have a master’s in women’s history, and Haben Girma graduated from Harvard Law.⁹

You’ve been told that we wear hearing aids but don’t hear much, that we must sign with our hands or use interpreters. You’ve been told that we exist in a perpetual state of darkness despite the fact that most blind people have some light perception at the very least—and many have more than that.

So let’s flip the script for a second.

What do you think a sighted person looks like? What about a hearing person? What can they do? Can they ski? Can they hike? Have they traveled by themselves? Have they gotten married? How would you know?

There.

That moment when you sit back, take a breath, and realize that a disabled person may be as different from a fellow disabled person as anyone else—just as all nondisabled people are different from one another.

You don’t know.

No one does.

So why does society insist on a binary system for defining blindness and deafness?

Because our culture relentlessly seeks two things: simplicity of understanding and the ability to sort into groups.

Disability is a broad category, containing millions of individuals, yet we treat it as a monolith, even today.

---

I was born in 1985, in New York City, to queer parents who wanted me. I was born with working eyes but without reasonably functioning ears or a heart that worked terribly efficiently. My parents went from excitedly counting my fingers and toes to figuring out how to manage a Deafblind baby (though they wouldn’t use that word at the time). They would fight with doctors over treating me as human, and they would navigate a medical system, an educational system, and a social system that didn’t really know what to do with me.

They would raise me in nondisabled society. I would not learn American Sign Language (ASL) or braille, nor would I be in special education classrooms. I would not go to Deaf or blind school, nor would I have a lot of blind friends. I wouldn’t grow up steeped in Deaf culture,¹⁰ so I would have to forge my own path to adulthood with a disability.

This book is more or less about how I got to thirty-five: with a handful of scars, some emotional trauma, and a healthy appreciation for the art form known as snark.

There were doctors who told me I wouldn’t make it to thirty-five. Hell, there were doctors who told me I wouldn’t make it to thirty. They made all kinds of predictions about how my body would betray me.

Even without the doctors, there was another specter that hung over my childhood: there was no one to look up to and see what my life might be like. Sure, there was Helen Keller, but Helen Keller was more Deafblind than I am. She went to Perkins.¹¹ The blind and Deaf women that I saw in books (only a handful) barely resembled me. The blind and Deaf men were worse, and the gender binary was such a strongly enforced thing in the 1990s that it wouldn’t have mattered anyway. I didn’t want to be compared to a boy. Why were the men worse? Because they conformed to masculine stereotypes that were about overcoming, and none of them had been born like I was.

In order to get here, I had to fight the dragons...