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Cerebral Palsy Is Not the Most Interesting Thing About Me

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I wonder if I’m destined to only be associated with the exact thing I’d prefer to minimize

I’m awful at the art of the retort. My older brother tried his best to teach me about comebacks, but the lessons never stuck. Insults leave me stunned and silent. And so it happened one summer night in 2007 that I was mute when a college writing professor told me: “Your disability is the most interesting thing about you.”

My disability, which I’ve had since birth, is cerebral palsy (CP), a neuromuscular disorder. The diagnosis can apply to a wide range of symptoms with various degrees of severity, but in my case it affects my balance, depth perception, and fine motor skills. Although I walk with a limp, I’m able to live an independent life. Two operations, plastic leg braces, and a few years of physical and occupational therapy mostly mitigated CP’s effects on me. I thought so, at least.

Then that writing professor offered her perspective: “Your disability is the most interesting thing about you.”

I didn’t know what to think, or how I felt. I was a little angry, too. I mean, she didn’t even know me. We had met only a few hours earlier, at the start of her class on magazine and newspaper writing. I had graduated from college that spring and was auditing her course as an aspiring journalist with the goal of getting a byline at a well-known publication. This professor was the quintessential New York Writer—the kind with uptown friends and a downtown address who I, too, hoped to be one day.

Maybe, I thought, she was trying to help. In her memoirs, she unabashedly embraced the messy parts of herself, spinning them into literary gold. She wrote about bad breakups and her history of addiction with self-deprecating humor and boom!—commercial and critical success. Maybe she was giving me the road map.

But I didn’t want to be the poster child of disability gone right. When I was a child, my mother made it a point that while the CP was a part of me, it did not define me. For decades, I was comfortable with that outlook. When people thought of me, I wanted them to focus on other things, like my fondness for animals, tie-dye, and corny jokes.

So I wrestled with the idea of writing about my disability, asking friends and family how I could do it without being preachy or downplaying the disadvantages—or ignoring the (surprising) benefits. CP has been a source of humor and dramatic victories as well as discounted Metro cards. It’s also an easy way to weed out the people in your life who are genuine from those who are not. But most of all, I didn’t want to feel like I was selling myself out.

Instead, I enrolled in an AmeriCorps program and spent about a year traveling the country constructing homes and working on environmental projects. Then, in 2009, I moved into an apartment in Queens, landed a journalism internship, and signed up for that writing course I had audited, this time as a paying student. I knew a good professor when I met one, even if she had intimidated, and maybe insulted, me.

For our first assignment—a personal essay on a humiliating moment—I wrote about how my disability impacted my dating life. The class workshopped a draft of my piece and I showed it to the editors at my internship, who liked what they saw. It was published prominently on the site.

And people responded. The comments were encouraging and supportive and the paycheck was appreciated—but I wasn’t sure how to handle it. The pride I felt from having reached people with my story was matched by my embarrassment when the piece became the top hit on a Google search of my name. What would potential employers think? How would a date react?

Later, in my second semester of a journalism master’s program at New York University, a (different) professor required us to blog on a topic of our choosing. I thought about it all summer. I heard it again: “Your disability is the most interesting thing about you.” I took a deep breath and gave myself a gut-check. Was I brave enough to put myself out there? Was there a legitimate space in the overcrowded blogosphere for disability-centric stories?

My professor loved the idea of a blog focused on disability issues, but I was embarrassed and nervous. I threw out other possibilities: animals, satire, fashion (though my beat-up sneakers and ill-fitting jeans weren’t helping me sell that pitch). “Carly, stop,” she said, slapping her desk for emphasis. “You already had a good idea. Just do it.” I nodded and left, trying to stay calm. Maybe nobody would read it. Maybe some massive computer virus would take out the entire Internet.

With no such luck, I started blogging. I was surprised at how many ways there were to write about one subject—individual profiles, hard news stories about legal developments, travel tips, and, yes, personal essays. Blogging became a way to sort and process my thoughts and feelings and bring attention to an issue that is often ignored or oversimplified. Disabled people are usually portrayed in the media as shining beacons of inspiration or as depressed outsiders who yearn for acceptance or, better yet, a cure. Truthfully, disabled people are just as complex as their able-bodied counterparts, and they have nuanced stories I’ve enjoyed getting the chance to tell—first on my blog and then as a freelancer for a number of different publications.

Although I’ve penned plenty of stories unrelated to CP, I sometimes worry about becoming a one-note writer. I wonder if I’m destined to only be associated with the exact thing I’d prefer to minimize. I wonder if it’s unethical to profit from disadvantage, and I worry about how well I’m representing the disabled community. I can only hope that my good intention is recognized and appreciated.

Having gone ahead and chosen to take my professor’s comment as advice instead of insult, I believe she meant well. Honestly, I think it’s the wording that bugged me—“the most interesting thing about you.” To me, it sounded like my disability was the only thing people noticed about me, or the only thing I had to offer. Even now, when I hear that sentence in my head, I try and think of a way to respond. Something funny, clever, or wise. Something. Anything. But I’m not really trying to respond to her comment. I’m trying to respond to the next question I hear, to the small quiet whisper in my head that asks: What if she’s right?

Carly Okyle is a writer for Entrepreneur.com who lives in Manhattan and freelances whenever possible. This piece was written for Zocalo Public Square.

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