Elsa Sjunneson

Working for Exposure: The Dangerous Costs of Memoir Writing

(listen to the selection, read by the author)

In the myth of The Crane Wife, the beautiful crane girl who marries the man she loves plucks her own feathers to weave the cloth that will be sold to feed their family. She removes body parts in order to give her husband shelter, she exposes parts of herself to the world that aren’t meant to be seen.

I feel a lot like the Crane Wife these days. I spent a year writing about my life in the form of a memoir, plucking my own traumas from my memory and writing them into a hardbound form; a spectacle for the world that does not know me.

I sold my memories to feed myself, to feed my family, to exist in a world that rejects and abuses disabled women like me every day—merely for the bodies that we have.

As happens in some versions of the myth, when the Crane Wife shows her husband her true self, he rejects her. He doesn’t want to be married to a cryptid, so she goes back to her crane brethren.

I have been increasingly private about my life over the last year, carefully tucking my truths under blankets to keep them safe. There are a lot of reasons for these choices–some of which won’t make it into this essay, for the precise reason that they are not stories I want to tell—but the profound desire to become anonymous, to hide in shadow, remains. This decision comes from the fear of rejection.

Because we live in an ableist society, my narrative is not instantly seen as valid. While the context of the non-disabled memoir is often one where we believe the narrator implicitly, I know that my identity will be picked apart by the carrion crows of non-disabled and disabled readers alike. They will try to decide whether or not I am Deafblind enough to claim crip, whether or not my story is valid in the eyes of the disability police. There are many different types of disability police, of course. There are the non-disabled people who believe firmly that they know what disability looks like—and they will tell you if they think you’re wrong. But there are also my fellow disabled people. We are worn raw by a world that rejects us, and that makes us the hardest on each other. But despite that wearing experience, we should be a lot kinder to each other than we are.

Memoirs are not safe spaces. They are vulnerable because we have to tear out pages of our own memories to write them—but I think disabled memoirs are especially vulnerable because of the ways in which disabled stories get used by the nondisabled public. Where a nondisabled memoirist can often tell their story, and have their stories left as their own, disabled authors must live in fear of their own stories becoming inspiration porn or cautionary tales. As an example, while I’m sure that Erik Weihenmayer didn’t intend for Touch the Top of the World: A Blind Man’s Journey to Climb Farther than the Eye can See, his memoir of his ascent of Everest, to be used to ask other blind people “why can’t you do this?” his memoir can often be found as  a tool to inspire blind people to be better than other blind people–to ascend their body and take risks.

The danger is not merely in what one discloses, but in what disclosures make trouble for other disabled people. I thought carefully about what disclosures I wanted to make in my memoir, even wrote a warning label for the book, explaining that I wanted people to move away from the instinct to use me as an inspiration.

That being said, there is no safety in exposing your medical history, regardless of who you are. Once your memory feathers have been plucked, once your story has been woven together and placed out into the world, you lose the right to keep it. Your feathers will be made into blankets, or flags or clothing, to be worn or used by people you may not know or even like.

And while I wrote a memoir about my disability, while I paradoxically hate disability memoirs because I think we have a right to privacy, I also think they’re an important way through which non-disabled people can learn from us. It’s a terrible choice to have to make, but it’s one I made because the only people who can change ableism are the people who most suffer from it.

In the crane’s wake, I crave privacy. I don’t want to talk about my life to strangers (or sometimes even old acquaintances who ask about my life). I want to talk about the book and its contents even less. I’ve been to therapy; I’ve processed that trauma. I want nothing more than to let the book stand— to stet—and to walk away from it to new adventures. To new stories. To new narratives that give me more peace than this one does. I would like to talk about parts of my life that bring me joy, or to write about new worlds other than these.

I have said too much in public about the things that are supposed to be unspeakable, and in order to further my career I will have to do it again, and again and again. I will have to keep plucking feathers from my skin, I will have to keep selling my memories in order to earn my keep.

But my memories are not a sustainable resource; once they’ve been shared, they can’t be used again to tell another story in another memoir. My anonymity has been sold away—and it won’t grow back. Those feather-light irreplaceable parts of me are gone forever.

Everyone who reads this book will know my medical history. They will see the footnotes that directly quote the texts of my body, they will see the stories that I have chosen to share about the abuse I have experienced in the service of making disabled lives visible. In particular, I discuss many instances of ableist abuse at the hands of not just strangers, but intimate partners. It’s a choice to make, to share that much of oneself.

I don’t know that I have regrets. I’m not sure I have the privilege of regret when being out in public has gotten me this far. But I can create spaces for myself that are private, which are hidden away. I can promise myself that I will be more careful with what I share. I can protect the people I love, their identities, their stories, their opinions. I can choose. I am folding my crane wings over the people that I love, and over myself, too.

I still have that right.

I have the right to say no, when someone asks to know more. I have the right to not give updates. I have the right to a life that is not lived in the public eye.

Despite my disabled body, and the public belief that there is access to it— that strangers feel that they can request a detailed summary of what’s wrong with me —the choice to reveal was and remains mine. It wasn’t someone else who told me to do it.

Still, I don’t have to tell people on the street my medical history. Just because I wrote a book about my life, about my body, it doesn’t mean the door to privacy, to keeping my feathers close to my skin, is hanging on its hinges, despairing at any kind of repair.

So don’t ask memoirists to reveal more than they already have. Don’t ask us to relive the difficulty of writing them. Give us some privacy, at least, when we have privileged you with our feathers.

Don’t tell me how you felt, don’t tell me how you are so sorry, don’t tell me how it makes you question my identity, like those who roll into my Twitter mentions to inform me I am not really Deafblind, according to your personal beliefs. Don’t come and place your feelings about my feathers at my feet, like I fear some will by telling me their experience doesn’t precisely match mine, therefore it is wrong. Don’t bring my memories back to me bloody and raw like a labrador with a dying crane in its jaws.

Just tell me the kindest things you can and move forward—because if I am punished for telling my truth, by doxxing, by consistent online harassment, by acquaintances who press for more details than they have any right to—I will shut the door, lock it, and keep everyone out forever. Honesty has a cost, and I see it coming for me every day. Being a memoirist is unsafe, and I know it.

To reach the highest points in the sky I will need every feather that I have at my disposal, my wings full and wide and glorious.

“Disability Futures in the Arts” is supported by the Canada Council for the Arts/Conseil des arts du Canada.

Logo for the Canada Council for the Arts/onseil des arts du Canada

Back to Top of Page | Back to Disability Futures in the Arts | Back to Volume 15, Issue 4 – Winter 2021

About the Author

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. Her debut memoir, Being Seen: One Deafblind Woman’s Fight to End Ableism, was published in October of 2021 by Tiller Press.