What I Wish I Didn't Know

By Jason B. Dutton

April 25, 2012

What I Wish I Didn't Know

I wanted to be a writer long before I wanted to write about myself. I’ve been an enthusiastic reader since childhood, and at ten years old genre lines were very simple. Nonfiction meant reading biographies, or history books, or newspaper articles; fiction meant devouring the adventures of the Hardy Boys, or Sherlock Holmes, or Agatha Christie’s Hercule Poirot. The latter was fun, and the former was not, and it’s no surprise that my earliest attempts at literary greatness mirrored what I enjoyed reading. I don’t remember being motivated by childhood dreams of fame and fortune. In the beginning I hoped I could get lost in my own writing as easily as that of others. Reading meant entering worlds I loved, and writing meant creating those worlds.

The worlds of my imagination needed people to live in them, of course, and a good deal of thought went into just how much of myself would find its way into my heroes. I could give one my first name, or maybe another would have blond hair and blue eyes. I could get my characters to act the way I wished I would act in dangerous situations, but there the similarities stopped. A hero had to be formed from just enough reality to feed my fantasy, and just enough fiction to transcend my limitations. My heroes were not to be short, or scared. They were not to be weak, and they certainly were not going to be disabled.

I don’t think I made a conscious effort to keep my cerebral palsy out of my writing. It would be more accurate to say that I didn’t see the point of including it. Why dwell on what limited me when a blank page offered the opportunity for so much more? I authored a detective story in elementary school, and in high school I was dabbling in tales of adventure, always with a protagonist who was a perfect, able-bodied version of me, always with a story involving a beautiful girl, some very bad guys and scenes that belonged in an action movie. It wasn’t until college that I was properly introduced to the personal essay and the term “creative nonfiction,” but even as I discovered some skill with the form, there was something preferable to me about the world of make-believe.

When I chose to write a work of fiction for my undergraduate senior project, I told myself that my immature days of authorial wish fulfillment were over. I was ready to face the topic of disability, I thought, but I wouldn’t be able to accomplish nearly as much if I were bound by the limits of what had actually happened to me. My action-movie protagonists were replaced by the next best thing, and my book chronicled the journey of the young man who would become my ideal version of the disabled me. His name was Brian, and he started as my attempt to see what would happen if someone shared my situation and my disability but lacked my optimism. Brian was angry about his cerebral palsy, angry at a world that offered too many challenges and angry at himself for his inadequacies. Thanks to a pretty girl named Maggie, Brian learns to see the best in himself, and Brian and Maggie learn that there’s nothing wrong with depending on one another. Not a bad book, I don’t think, but not a great one. It was a several-hundred-page example of what happens when fiction is used as a safety net.

Here’s the thing about creating challenges for a fictional character: if you want that character to overcome those challenges, you have to know how to overcome them yourself. Brian had anger because I knew how to rid him of it, and all of his problems with Maggie were problems I knew how to fix. I saw a light at the end of the tunnel for these two, and I was more than happy to guide them toward it because I was providing a life for Brian that I wanted for myself. I was single, disabled, and twenty-two, and I had no idea if the future held success or failure, love or rejection. Rather than face my uncertainty, I was again creating a world for myself, a world that was safe because I could control what happened to my disabled doppelganger. And because the life I was writing was easier than my own, I often wondered if it was too easy. I wondered if the people I was rendering were even remotely believable, and my doubt turned into paranoia about the simplest decisions. Would a real person go pour himself a drink at this point in the scene? Do real people talk the way my characters talked? Writing action scenes for my heroic alter egos was never a problem; wish fulfillment took priority over realism, I was operating in a reality far removed from my own, and no one else was ever going to read what I wrote. This time I had aspirations of publishing the story of Brian and Maggie, but even more important, I wanted to believe their story could actually happen. Approximating realism was quite a burden when it mattered.

It took me years to leave Brian and Maggie for a return to creative nonfiction, and when I did, I was thrilled to exchange the burden of fiction for the burden of truth. I would no longer have to worry about being believable, because I would be writing about what actually happened. I would later learn about the struggles of being truly honest in nonfiction, but I liked having limits. Like the teenager embracing his curfew because he prefers solitude to a loud party, I was happy to explore a genre that wouldn’t allow me to conjure people and places from thin air. The trade-off was that my subject matter was now restricted to my very real life, and my life included a very real disability.

I like to think I have a pretty realistic view of my condition. Cerebral palsy is not my enemy, nor a punishment. Nor is it something I take pride in. Cerebral palsy is the reason I wear plastic braces on my legs. It is a consequence of my premature birth, the result of bleeding in my brain, two words used to describe a failure to communicate. My brain has trouble telling my muscles what to do, and as a result my legs are spastic. My condition manifests itself in subtle ways, such as the reduced range of motion in my left hand or my exaggerated startle reflex, but to list every little abnormality would be burying the headline: I cannot stand or walk without support. In order to walk through my house, I keep both hands firmly gripping the red plastic handles of my metal, four-wheeled walker. Cerebral palsy is the major abnormality in my life. If I’m to write with any kind of honesty about my experiences, cerebral palsy has to be acknowledged. And in a lot of ways, cerebral palsy is harder to write about than it is to live with.

I don’t think I was ever afraid to write about my disability. There may well be parts of my life that I can’t bear to examine on the page, but cerebral palsy as a topic isn’t one of them. My disability is linked to all sorts of negative emotions in me—fear, anger, and depression among them—but from the moment I decided to even attempt creative nonfiction I remember being hampered by something else entirely: I’ve always struggled with the idea that a disabled writer writing about his disability is taking the easy way out.

It doesn’t seem logical, not when I write the sentence out and stare at it for a while. I can’t find any solid evidence to back up the assertion I just made. There’s nothing wrong with writing about cancer, or multiple sclerosis, or blindness, or cerebral palsy, or paralysis. I’ve never objected to essays and memoirists who chose to face the demons of suicide, or depression, or sexual abuse; in fact, I would be among the first to argue that dealing with these issues on the page is beneficial both for the writer and for the reader who has endured similar tragedy. I don’t fault other disabled writers for writing about their conditions, and people like Nancy Mairs and Floyd Skloot have ably demonstrated that such writing can educate and engage others. So why is it that there is always a voice in my head that smirks at my essays? “Well sure,” he says. “Of course you were going to write about that.”

That. The topic I can’t avoid. It isn’t that other people before me have already written about disability; my mental critic isn’t really that concerned with being original. If I became president, I’d have no problem writing about the presidency, and I’d be happy to chronicle my ascent of Mount Everest were I ever so lucky as to ascend. But these things are accomplishments, moments of triumph, sources of pride. The voice in my head tells me that writing about disability would be to allow myself to be defined by the one area of my life I’m least proud of. And I’m not comparing disability to a drug addiction or a murder spree. In this case, the opposite of pride isn’t shame. It’s indifference—or maybe, on a bad day, scorn. Cerebral palsy isn’t worth my time, or my words. I am not going to write about this road block in my life, and I sure as hell will not be defined as a disabled writer, as if there was such a thing as disabled writing.

I tried to avoid it. For a while I entertained the idea that I didn’t need to mention cerebral palsy unless the reader needed clarification. But I couldn’t write about a birthday party without mentioning why it took a lot of effort to climb a set of stone steps in front of the birthday girl’s house. I couldn’t write about my longing to be a stage performer without revealing why I can’t perform. Before too long, I realized that cerebral palsy had affected nearly all of my existence in some way or another. Not only that, but I was beginning to wonder about the extent to which my disability had molded who I’ve become, beyond my physical limitations to the way I process things, the way I see the world. I was twenty-seven when I started thinking this way, and the remnants of the fiction writer in me thinks it’d be more flattering to claim self-awareness earlier in life. Then again, up until this point I’d never given serious thought to my disability affecting my perspective beyond a heightened ability to spot ramps and handicapped parking spaces. I wasn’t sure what it meant to acknowledge that the affects of cerebral palsy went much deeper.

And why did that uncertainty make me unhappy? Why am I so reluctant to embrace the unique perspective my condition has given me? Why do I sometimes regret that I have much more skill writing about the challenges of my life than I do writing about my superheroes of fiction? I can believe that my experiences are worth sharing, and I’ve heard from able-bodied readers who appreciate seeing the world through the eyes of a disabled man. So why am I not more enthusiastic about that role, about being a literary ambassador of sorts?

Well, because writing about my disability is easy. And it’s difficult.

I could go on for pages about how my disability affects my life. I could do this without even working at it. There are the physical details, like how quickly I get dressed in the morning, what I choose to wear, how I drive to work, and how fast it takes me to get to my desk—and I’m not even halfway through my day. With more thought, I can address the intangibles, like how I think about friendships and romance and my future and my religion. I don’t think cerebral palsy had anything to do with my preference for Pepsi over Coke, or my love of the music of Billy Joel, but topics that are truly disability-free seem few and far between. And every time I acknowledge the importance my brain damage has in my life, I am reminded of how hard I’ve tried to convince myself and others that I am more than what crippled me. I am an independent man who wants to be seen as normal, and I am a writer who has written essay upon essay about the nature of the thing that I don’t want to define me. My mental critic sees that contradiction, the fact that I concentrate so much on what I want to ignore. He says that writing about cerebral palsy is taking the easy way out.

Except that writing about cerebral palsy means sitting down and really thinking about my disability, and this is difficult. My problem isn’t reticence; I’m striving, in fact, to be as open and honest as possible. First, however, I have to understand myself, and then I have to express myself effectively, putting each tool in the writer’s toolbox to its best use in building each sentence, paragraph and page. Truth is hard to find when my emotions are so complicated, and harder to express.  Pondering my disability really doesn’t make me any happier about it. I’m not pleased that it takes me longer to get dressed, or that I prefer jeans to khakis because they’re harder to wrinkle. I’m not thrilled about driving with hand controls, or getting tired when I walk through my office. I’d rather not evaluate my friendships based on whether I’m a burden to others, and I’d rather not have to wonder what a girl will think about mobility aids every time I go on a date. But as much as my condition fails to leave me elated, I have to face another truth about it: after a lifetime of disability, it’s not often that I give cerebral palsy a lot of thought. Even for me, it’s hard to believe that my condition can affect so much, and yet escape my notice so much of the time.

I have a theory: disabled people have a limited amount of emotional energy. I’m pretty sure this is true of the able-bodied as well, but let’s stick with the life I know. When I wake up in the morning, I can choose to be angry about the fact that handles are required in my shower in order for me to stand up. I can resent the fact that other people don’t have to put plastic braces on their legs in order to improve their gait. I can sigh at every step I take from my house to my car and think of how much longer my shoes would last if I could pick up my feet. If I did all of this, I would bear the weight of three of life’s injustices within the first hour of my day. If I wanted to, I could probably write a few pages about any one of these things, and how I wish they could be different. But if I choose to live the life of a functional adult male, concerns about job performance and finances and how I’m going to fill my weekend will eventually chase complaints about my shoes straight out of my head. My mind simply has limited capacity for all of the things that could conceivably bother me.

This is the tension that has always existed for me as a disabled essayist: writing about parts of my life as if they were a big deal while simultaneously believing the opposite. I know that some of the deepest wounds in my life seem bigger when I dive into them and smaller when I look away; regardless of their actual size, I need distance to help me function and clarity to help me heal.  I will never be able to tap dance like the hero of my favorite MGM musicals, and this bothers me deeply. It bothers me when I think about what I can’t do, and it bothers me when I write five or ten or twelve pages on the topic. But if I consider how much my lack of dancing shoes affects my daily life, if I really think about how often dancing affects my mood, the role of this particular deficiency is reduced to maybe a couple of fleeting thoughts a day. You’d think that it’d be different for the deficiencies I’m actually reminded of daily, but it’s not. It takes me longer to walk across a parking lot than most people, and most days that doesn’t bother me. I’m happy with my life—or, at the absolute least, I’ve accepted it.

Somehow, this view becomes distorted when I sit at the keyboard and put on my essayist hat. An essay isn’t a whole life on paper; it’s a snapshot. And sometimes I think that the snapshots I provide can never quite be accurate. Let’s say I wanted to write about my workday. I can’t say my day is just the same as anyone else’s, because it’s not. But the moment I open the door to my experience, I have to talk about hand controls and scraped sneakers and the long walk from the parking lot. Before I know it, the snapshot I offer to the reader seems darker than it should be. I want to swing in the other direction at the end of the paragraph. I want to say, “Hey, don’t worry about that thing with the sneakers, because it’s really no big deal. Even though I’m more tired than everyone else most of the time. I’m okay.”

Except that’s not honest either, because getting tired in a parking lot isn’t fun. I’m lying when I’m cheerful and I’m lying when I’m not, and I don’t know how to find the honesty in between. But maybe it’s enough to start by admitting when my words don’t feel quite true. Maybe writing about the honesty of disability will help me recognize what I feel, name the emotions I don’t know, chart the points at which “true” and “false” are so interconnected as to be rendered inadequate descriptions. Maybe finding the honesty of disability is much like exploring the honesty of betrayal or love or life, and maybe writing about disability isn’t much different, or any less significant, than writing about anything that is real and true.

So, where does that leave me? I wanted to be a writer long before I wanted to write about myself, and now I’ve found that writing about myself is the best way for me to be a writer. I write about what I know, and what I wish I didn’t know. There are times I’d rather ignore cerebral palsy than write about it, and I spend most of my time believing that I should write about cerebral palsy because I want to ignore it. I want to be normal and I write about abnormality, because I don’t want to limit my understanding of myself to the parts I like, or want others to see. Maybe that makes me just like everyone else.


Please feel free to weigh-in about writing with and/or about disability.


Jason B. Dutton is a second-year MFA student at Ashland University. He lives near Columbus, Ohio.

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