Story by Story, I Write Myself Into the Narrative
I want to see myself on the big screen. Or, more accurately, I want to see my people on the big screen — folks with stubborn bodies and obstinate minds. I want to build a world in which disabled people are no longer relegated to the role of two-bit villain or tragic protagonist who commits suicide. I want people with SMA to be superheroes and treasure hunters and Jedi and Sith; I want people with SMA to love and be loved, complete with sappy music and sexual tension.
I want a lot of things. But the things I want don’t exist, so I have to make them myself. I have to write the stories — the rom-coms, the blockbusters, the 800-page fantasy novels that spawn a franchise.
To no one’s surprise, the writing has become my life’s work.
Growing up, I assumed it would be as easy as putting my protagonist in a wheelchair. Ultimately, that’s all I wanted from my stories. An accessible van, or a BiPAP, or an open-minded love interest who just so happens to be visiting the hospital the main character is staying in. Some people want to write stories about being disabled, and that’s great — the world needs those stories just as much as it needs the cyborg vigilante with a learning disability. But that was too complicated for me.
I wanted the simplicity of diversity. “Star Wars” plus me. I wanted a Disney princess with a visual impairment, or “You’ve Got Mail” with an ambulatory Meg Ryan, or “National Treasure” with a paralyzed protagonist who fell head over heels for Riley Poole. (I actually wrote that last one. I don’t like to talk about it.) But it’s so much harder than girl in wheelchair plus love story trope equals win for diversity. Elementary school arithmetic doesn’t even begin to cover it.
Years ago, when I was drafting my first novel, I wrote a protagonist who was essentially me. She looked like me, talked like me, loved and fought like me. She even had SMA. It was the only source of experience that I could reliably draw from, so I drained it dry, fulfilling my childhood dream of inserting myself into a story.
Thankfully, the character became her own person. She reflects me, like all good characters do, but there is a line that separates the woman writing the novel and the woman in the novel. She still has SMA. She struggles with feeling too much too often. She is part of me, but I, Brianna, am not part of her.
The first few drafts were messy. Character development was nonexistent; the plot was a zigzag of stakes and dwindling tension. Slowly, Blaire became the character I wanted her to be, flawed and earnest and very, very scared. But I still struggled with her disability.
I knew she was in a wheelchair. I knew she needed hands-on care. I knew she was stronger than me, more type 3 than type 2. I experimented with illustrating her disability, from physical limitations to her inner thought processes. But I couldn’t get it right, no matter how hard I tried. I would read a scene that reflected my own experience and think, “That’s too much. No able-bodied person will want to read this.”
So I trimmed and cut and rewrote. I gave Blaire significantly more upper body movement. I softened some of the most visceral passages — descriptions of her disability, or moments of action where Blaire was relegated to the sidelines.
She was still in a wheelchair. Still true to life. But she was less.
She was more palatable.
I love that book. I want to publish it more than anything, and I stand by the decisions I made in representing SMA. But as I transition to new projects and new protagonists with different disabilities, I’m starting to realize that “writing myself into the narrative” is far more complicated than I originally thought.
I don’t pretend that my representation of SMA will speak to everyone. It won’t! But one thing is for certain: Every time I write a girl in a wheelchair, the reflection becomes a little clearer, the image sharp and true. Every time I write a girl in a wheelchair, the tradition of storytelling becomes that much more open and welcoming.
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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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