Writer's Notes is a series that invites writers to detail their projects at any stage in their process. Writer Sarah Ulicny talks about how fundraising contributed to the evolution of her tentatively titled novel, Alice Merkel v. Helen Keller.
Okcupid said we were a 95% match. We met at a very romantic Au Bon Pain: I ordered a chai latte and he ordered a coffee, black. We found a clean table and smiled politely at each other. I wondered—the way I always wonder—if he noticed the way I walk. I have very minor cerebral palsy and it has christened me with an unorthodox gait, which only more observant people can detect. The Beatles were on. He said he hated The Beatles. I said I loved them, but what I wanted to say was that a person who didn’t like a single Beatles song was a morally bankrupt person. But this was not first-date Kosher. There was a long silence filled by “Yellow Submarine” and occasional sips.
He eventually asked me what my novel was about. I told him it was about a modern twenty-something girl with mild cerebral palsy juxtaposed with a fictional retelling of a twenty-something Helen Keller. Like Julie & Julia except instead of cooking, there’d be disabilities. My heroine Alice is a cynical screw-up, I tell him. After a suicide attempt and bout with severe depression, Alice is nagged into going to a past life regression therapist by her impressionable friend whose own life had been transformed by the experience. Through the course of her session Alice “discovers” she was Helen Keller in a former life. The therapist—think P. T. Barnum—turns Alice (and himself) into a local celebrity.
He looked at me as if I was a puppy with a surgical cone around its neck. I told him that the thing is, is that she's made it all up, subconsciously at first, and then later, intentionally. He pressed his lips together. I told him that it’s about self-acceptance. The guy looked at me then says, “A novel about a disabled woman? No one would read it.” I had a mind to call him morally bankrupt, but I changed the subject and we both suffered through another half hour of bad conversation before calling it a night.
I immediately forgot his name, but his comment stayed with me. I wondered if he was right. I wondered if people without disabilities really wouldn’t have any interest in reading about someone with a disability, and worse, if people with disabilities would rather read about perfectly formed heroines. Let me pause here for a moment. Some people might object to the use of the word perfectly. People might say, “I am perfectly-formed because God doesn’t make mistakes,” etc. etc. But I’m telling you, I am flawed. I’m flawed because I have cerebral palsy; I’m flawed because the pupil in my left eye is sunken; I’m flawed because I think Beatles-haters are morally bankrupt. I don’t think perfection ought to be the goal. Perfect is boring and more than that, perfect is something only fictional characters can be. Believing anyone in real life is capable of perfection dooms us to misery.
But the Okcupid guy’s voice stuck in my head like a commercial jingle for a product you don’t want to buy. Despite his use of the word disabled, which only works for vehicles and is far more offensive than calling someone imperfect, did he have a point? I myself have never read a novel about a woman with cerebral palsy. The most famous book about someone with cerebral palsy is probably the 1954 memoir My Left Foot by Christy Brown, an Irish artist and writer who was only able to utilize the toes on one of his feet to write and paint. When you consider that annually one in four hundred births results in some form of cerebral palsy, that’s fairly surprising. Where is it that our voices are cut off? Is it by school bullies? By a condescending teacher? Is it by a narrow-minded literary agent? By a scared editor? Or is it cut off at the source before a single word can meet the computer screen? These thoughts led me to make a decision.
I wanted to see if it really was true that no one would read it. I set up a gofundme.com page, talked about myself and my project, set a monetary goal, and advertised. It would be disingenuous to say that I was only testing the waters. This project required research. I’d begun to lay the groundwork by reading Helen’s writings and scouring the internet for any material that humanized her from the myth. I had to invest in a session with a past regression therapist (a considerable expense for someone who, despite being terribly interested in the idea, regards the therapy as lunatic fringe). More importantly, in the summer I plan to visit Helen Keller’s childhood home in Alabama, talk to people who know personal stories about her, visit Cambridge, Massachusetts where she spent her college years, and more. All of this costs money that I do not have. My supporters have been amazing. More than their monetary contributions, their encouragement means so much. I’ve received many comments saying that the project was important, inspiring, and necessary. It seemed as if people would read it.
These supportive comments changed my entire project. Initially, my Alice was sort of an alter-ego. Her CP was, like mine, more minor than minor. She was a screw-up slacker who wanted to use her flaws as excuses. She was the most unambitious version of me; the me that spends whole Saturdays playing Tetris and watching Cheers episodes, but I realized that by making a simple change to my heroine, I could write a book that lived up to the comments of support I’d received.
No longer would she be a girl with a slightly-odd gait and a hearing aid. Now Alice would have a significant walking disability. I’m ashamed of how scared I was to make this change. Even though I technically have CP, I can still pass for someone who doesn’t have it. People are often surprised when I tell them (or maybe they’re just being polite). It made me feel good to be able to fool people. Yet it also made me hate having CP, because it frightened me to write about a part of myself I’ve been actively disowning. I have searched YouTube for videos by young women with CP far worse than my own. Pretty, confident, smart, funny girls who appear to embrace their disabilities. Cool girls, like I hope Alice will be by the end of her story. Like what the girls in the vlogs experienced, people would assume Alice’s spastic diplegia (a form of CP which mainly affects the legs) meant she was mentally challenged. Also like the vloggers, sometimes men in cafes would find her cute, join her for coffee, and when she pointedly excuses herself to go to the restroom, thereby showing the men how she walked, these men would sometimes leave before she came back.
I believe in fiction’s power to enfranchise people who have been marginalized. When you read stories about “the other” they become less strange, and you realize that the gap you thought existed was an illusion all along. Perhaps the reason there hasn’t been a significant novel about a woman with cerebral palsy is because we’ve convinced ourselves too quickly that no one would read it.