I Built My Own Godd*mn Castle

I am going to tell you the story of how I destroyed my first novel. It’s a story that I wrote when I was young, a story that was about a girl like me, a disabled girl, confronting horrors and adapting to a world she didn’t quite fit into. I found my way to telling a different story—one I revel in now.

I am going to tell you the story of how I destroyed my first novel, but it will take a minute because these moments don’t happen in an instant. They happen over periods of time. They are a reaction to a lifetime’s worth of lessons.

I am seven the first time I see my disability in a book. But the blind character in this book is a boy, and the boy shot himself in the face with a firework. Or maybe his friend did. I can’t remember. I just remember it was the only book I got when I asked for a book about a blind kid like me.

That is not my disability. Mine was acquired at birth. Mine is not traumatic for me. Mine is not total darkness, sunglasses in the day blindness. Mine is partial. Mine is coupled with hearing loss.

I am deafblind. Partially. My classmates will test the boundaries of my losses, trying to find chinks in my armor like all bullies do. I will test those boundaries in other ways, finding my limitations in stairwells, mountain faces, and archery.

I am in middle school when I am handed Flowers for Algernon and Of Mice and Men. The messages in these books are simple ones to me: you don’t want to be disabled because we will cure you, or we will have to watch you to make sure you don’t hurt anybody. I am uncomfortable with both of these books, but I don’t say anything because I don’t know the word for what hurts me in these texts. I don’t know how to argue with authority yet. I sit quietly and internalize these messages. I am impressionable.

As the words wash over me, they tell my classmates things too. The messages here will resonate with me as an adult, as someone constantly questioned about why I wouldn’t choose a cure if it were offered. No one ever asks what a cure would be like. They just ask why I don’t want one.

Cures are easily given in fiction, without showing the difficulty of adjusting to a world you’ve never known. It’s not like I remember how to see out of both eyes. I don’t even dream of it. Monocular vision is a part of me, in the same way that my occluded cataract is the only reflection I’ve ever known.
I am in my freshman year of high school the first time a classmate writes an inspirational essay about me. My teacher asks me to let him read it aloud in class, while he sits right next to me. I say yes, because saying no to authority is a skill we have to learn.

When he compares me to Helen Keller, I want to melt under my desk. He doesn’t compare me to Helen Keller because I hold radical political beliefs (I don’t, not yet.). He does it because he can’t imagine what it’s like to be me, to live my life, and he finds me inspirational for going up and down stairs by myself. He asks me on a date and I quietly say no. I don’t understand why until later. It will happen again, and again, and again. I will be told it is flattering.

It is not.

It is not flattering to be told that you are like the only other deafblind person that anybody has ever heard of. It isn’t flattering to be put on a pedestal by people, told you’re pretty out of pity. I wanted to be more than the sum of what my body does. It took me until I was in my adulthood to figure out that I could be both deafblind and a badass or a beautiful woman. It took until I had control of the narrative. It took several tries to couple everything into one whole.

It’s mine now.

I am sixteen. I have written my first novel, and most of my second. I am in a class where we are studying social justice. I ask the teacher if I can talk about, write about, read about disability. I am told that it doesn’t matter, that it’s not important. I take this to mean that my perspective does not matter. In that classroom, it didn’t. My classmates talk about gender and race around me, and I relate, but every time I think to raise my hand and talk about what it’s like to be the only blind person in my school, I put my hand down. It’s isolating. I fight feelings of shame and feelings about my identity. I transfer schools.

Removing disability from my narrative means I fit in here, and so I do it. A few weeks after the class, I get my first white cane. I struggle with whether or not I need it, but it changes my life for the better.

I delete Word documents, and destroy my first disabled protagonist. She was probably a Mary Sue, a reflection of myself that I needed at the time. But I’ve lost her. I can’t get her back now. I wish I could, because I bet she would be worthwhile to revisit and make whole, and give a narrative to.

I reclaim that narrative later for myself, and for other disabled girls who don’t know how to stand up and say that they want a piece of it.

I am seventeen when I meet Miles Vorkosigan. I’m not ready to meet him then. He startles me, I see myself in him and I don’t want to, because the common narrative told me being disabled was a weakness, not a strength. When I re-read him several years later, I find myself reveling in his glee, his reckless abandon. His energy.

I wish I’d been ready for him sooner. He is what tells me I deserve romance, that I deserve my own narrative. He is also still a boy. I have no women in fiction to guide me.

I am in my mid-twenties the first time the word “disabled” escapes my lips as a word to define myself. I’ve had a white cane for six years, yet I still don’t see myself as disabled, because no one else does.

When I discover it applies to me, it feels freeing.

I have mere days left in my twenties when I start writing a book about a disabled woman, a woman who shares my blindness, though not my conditions. It is rewarding, working through a story that feels right, the weight of the story, the sensory details all mine.

I’ve made a promise to myself, one that I haven’t shared yet. A promise to tell stories about disabled people as often as I can, as many varied stories as I can, because for me, I didn’t get enough of them when they were needed.

I am thirty-one when I take a job as an editor, creating a special issue for a Hugo award-winning magazine where I will, with other disabled people, destroy ableism like the kind that took me years to undo, and will take me more years to untangle and burn away.

That magazine is Uncanny. That issue is Disabled People Destroy Science Fiction. That job is Guest Editor-in-Chief of Non-Fiction. Those disabled people are my co-workers, my co-editors, and the writers I will work with.

I am Elsa. Disabled. Deafblind. Angry.

Sworn to never let anyone else do this to me or my words again.

I am here to destroy.

Disabled People Destroy Science Fiction is a continuation of the Destroy series (now brought to people by Uncanny Magazine) in which we, disabled members of the science fiction community, will put ourselves where we belong: at the center of the story. Often, disabled people are an afterthought, a punchline, or simply forgotten in the face of new horizons, scientific discovery, or magical invention. We intend to destroy ableism and bring forth voices, narratives, and truths most important to disabled writers, editors, and creators with this special issue.

Elsa Sjunneson-Henry is a partially deafblind speculative fiction writer and disability activist. Her short fiction is included in Upside Down: Inverted Tropes in Storytelling, Fireside Magazine, and Ghost in the Cogs. She also writes for tabletop roleplaying games and was part of the ENNIe award-winning staff for Dracula Dossier. Her nonfiction has been included in The Boston Globe, Uncanny Magazine, Terrible Minds, and many other venues. She teaches disability representation at Writing the Other, and recently spoke at the New York Public Library on this topic. She is the Managing Editor at Fireside Magazine. She has a Masters in Women’s History from Sarah Lawrence College, and uses it to critique media representation of disability from all mediums.


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