I Called Mine Beautiful

2016 Editors’ Award in Creative Nonfiction—Winner

 

Maybe it would be useful to know that when I was a five-year-old girl, lying alone in the dark, I invented ways to twist my pink Care Bear nighty into a sexy outfit. I knew what “sexy” looked like because I’d seen Jessica Rabbit and the way her matching sultry eyes and mountain-breasts made the room stop and drool. I’d also spent many secret hours in the basement watching my grandmother’s taped “programs” (read: countless episodes of As the World Turns on stacks of VHS tapes) full of muscly men fervently whispering into the diamond-lobed ears of women in silky blouses. I understood sexy. In these late hours, alone on my small mattress, I would yank one elastic ruffled sleeve down my shoulder and rub my cheek on the smooth skin. Even as this tiny person who didn’t have a clue what sex was, I wanted to be sexy—seen as a beautiful object—worth keeping around just to look at. It had not yet occurred to me that my paralyzed legs might have an effect on that dream.

It might also be useful to tell you about the Saturday afternoon in the late summer when I decided I needed to wear something dazzling to the library. I put on my blue-and-white floral dress-up gown—the one overwhelmed by ruffles and lace, of course. It was made for a body much larger than mine, so the sleeves sagged around my child-arms and the hem landed well below my feet resting limply on the footrest of my hot pink wheelchair. As my dad pushed me over the bumpy sidewalks, cracked with the growing roots of old trees, I felt regal. I was a princess riding an elephant, tilting my chin up with a graceful smile. I was beautiful.

Before we saw the boys, we heard their wild-boy sounds, joking back and forth on their front porch. I prepared myself to be admired. They would certainly catch their breaths at the sight of my splendor. As my dad pushed me past, I could not bring myself to look at their smitten expressions; I only heard their chatter disappear. I imagined their eyes transformed into throbbing red hearts as we glided past.

I glowed for the rest of the afternoon, soaring in the revelation that I was powerfully beautiful. As soon as we got home, I flew to my mom, anxious to relive the experience with her.

“They couldn’t even speak as I walked by, Mom. All of them just stared and stared at me.” I was bursting. I remember my mom’s silence. She looked at me, and I saw sadness in her face. In a rush, like a full balloon gushing icy water over my head, I knew. They were not staring at my loveliness. They were staring at my wheelchair.

Or maybe they weren’t. Maybe they all went silent as my dad pushed my chair past their porch because one of them had just whipped out a dirty magazine, and they were hovered over the pages glossed with forbidden curves. And maybe my mom failed to match my excitement because she was an exhausted mother of six. Maybe she hadn’t even heard what I said. Certainly she would have felt the need to protect me from misinterpreting the world as a place that celebrated the visual appeal of girls in wheelchairs. The only thing I can confidently tell you about that afternoon walk to the library in my stunning ball gown is the consuming thought that sutured its greedy, gaping mouth to each cell in my body. Boys do not think you are beautiful. The only reason they gaze at you is to gawk at your difference. I felt ashamed for believing otherwise.

When my sister Sarah and I were fresh teenagers, we constantly begged our parents to take us shopping. We spent roughly half of our youth in thrift stores, filing through rows of graphic tees and puffy vests, swishy dresses and lacy tank tops. But this was important work—the chance to pick and choose the costumes that would assert to the world what kinds of girls we were. Sarah would fill her arms and I’d stack my lap with every possible style, and we’d try on all the outfits. Hours and hours of fashion shows and what I remember the most was my parents’ constant concern for Sarah’s modesty. The ritual took on a predictable pattern.

“That’s a lovely slip,” my dad would say to Sarah.

“It’s not a slip! It’s a dress,” she’d say, rolling her eyes.

“Oh no, I don’t think so. Dresses aren’t that small,” he’d reply, feigning confusion.

“Daa-ad, come on! It’s not that short.”

“You don’t know how boys look at girls, Sarah.”

“It’s just a dress!”

“You wear that dress, and none of the boys in the room will be able to think straight.”

I noticed that neither of my parents ever said this to me. In their silence, I heard: When men look at you, they are able to think perfectly straight.

I was beginning to piece it together. My sister’s body and my body meant different things to the people who looked at them. Hers inspired, tantalized, and mine? Mine—didn’t.

I am a nearly thirty-year-old woman. I know that objectification of women is a bad thing. I know also that having a body that gets a pass on cat-calling is a bonus, a shield, a super-power of sorts. I also feel compelled to tell you—and why, I really don’t know—I should keep this to myself—except, maybe it’s an important piece—but I was wildly jealous of my sister’s ability to put on a little dress and make the room stop and drool, Jessica Rabbit–style.

Once, when moving down the main drag of my small college town with a group of friends, a man shouted at me on the street, “You’re the hottest girl in a wheelchair I’ve ever seen!”

“And you’re the sharpest bowl of mashed potatoes I’ve ever seen!” I shouted back.

No, I didn’t say that. Next time, though. Instead I rolled my eyes, kept moving, and laughed every time I retold the story for the next one hundred years. The man hollering at me on the street was rude and spoke with the thoughtlessness of a drunk man, but he did not make me feel as small or powerless as the man who, unprovoked, approached me from behind, grabbed the handlebars on my chair, and pushed me up a long ramp in front of the library. “There you go!” he said cheerily, when we reached the top, convinced, I’m sure, he’d met his good-deed quota for the month.

I suppose I do understand objectification. It’s just, instead of being read as an object for sexual gratification, I’m read differently—a signifier of brokenness, helplessness, always in need of some friendly assistance. I wonder, though—it’s scandalous, I know, but sometimes I do—I wonder what it would have done for my developing self-perception—my understanding of myself as a woman among women—had my body been included in the objectification most non-disabled women experience. For good or bad, would it have changed my relationships with other women? The course of my career? Would it have affected the outcome of my romantic relationships? (Which, historically, have been a bit of a wreck, in case you were wondering.) Would it have been easier to imagine myself as somebody’s wife? Somebody’s mother? Am I a feminist because or despite the fact that bodies like mine are consistently represented as asexual? While I can see that I’ve gained, I wonder, is there something I have lost?

My sister Sarah started nudging me to create an online dating profile about three years before I actually did. She’d take a picture of me—always something flattering, by the way, like hiking my leg up to jump into my truck or stuffing my face with a plate full of pancakes—then show it back to me with a cheesy smile: “New online dating profile pic!” When I looked at these images of myself, the first thing my brain did was picture the faces of the men who would see this photo. There they would be on their sleek Macbooks, scrolling through the profile pictures of all these bouncy yoga marathon runners, and I could see them pausing at my photo—the smiling girl in the wheelchair—and cringing. Or worse, stifling a laugh.

“I’ll never do it!” I would scream dramatically at my sister. “It’s too much like an SNL skit. The pathetic girl in a wheelchair, looking for love? It’s too awful!” You see what I did there—I made fun of myself before anyone else could. I made sure to start laughing first.

“What do you think about this part of me?” I asked Jared on our first date. He wore Hollister jeans with bejeweled back pockets. “I mean, what do you think about my wheelchair?” What do you see when you see me? I wanted to ask.

Jared didn’t miss a beat. “It doesn’t matter to me. It’s not like it defines you.”

Ding, ding, ding! I could hear the crowds cheering from the audience. What a well-packaged answer, wrapped in glossy-gold paper. Why did I feel like pushing him out of his chair?

Maybe it’s because I wondered what it meant if my impaired body did define me. Would this be tragic? Could Jared claim that his body did not define him? Is he not somehow defined by the fact that he was born with a penis? That his skin is light? That he towers above most people at six feet and three inches? That he started balding at age twenty-two? Surely all of these characteristics of his body played some part in shaping him into the personality that sat in front of me, but Jared believed that my personality had to be shaped apart from this body that sat in front of him. As if associating me (my personhood) with my body (my crippled legs) would be an insult. A body ignored, discarded, erased.

After Todd and I had exchanged a few messages online, I asked him whether he had any questions about my disability. He said no. His mom is a physical therapist, he said, so he knows all about that kind of stuff.

Was I aware, though, of the role diet plays in paralysis? No? My doctors probably hadn’t told me, but Todd knew how a nutrient-rich diet actually had the power to cure me of my ailments. We might have to add a few stretches, too, but Todd was willing to draw me sketches of these exercises. He was hopeful of the results!

I loved telling people about Todd’s plan for my rehabilitation. “I mean, who would have guessed that all this time it just came down to kale?” I would screech.

Todd’s plan seemed so ridiculously misinformed and unaware that I couldn’t talk about it without giggling. Underneath its hilarious surface, though, there was a darker, rougher thought that I only took out when I was alone, running my fingers along its sharp edges. Todd assumed, without any prompting from me, that I wanted someone to fix me. When Todd saw the photos of my paralyzed legs posted to my profile, he fixated on a problem to be solved. He wanted to talk about the mechanics of my limbs, the emaciated shape of my legs, and devise a way to normalize them. Surely I wanted to be able to walk! Surely I didn’t want to be what I was. Right? A body reduced to an object—a piece of broken machinery.

So, objectification that rushes to help, gawks at difference, erases, pities, belittles, but never sexualizes. And do I want to be sexually objectified? Not right this minute—not while I’m working this through with you. But do I want to be consistently, comprehensively, and automatically asexualized? Well, no, because this invites another twisted form of damage. Let me try this from another angle. Before I had seen how others saw me—before I started constructing an identity for myself based on the gawking gaze of others—I enjoyed my body for what it was. Did you do this, too? I called mine beautiful—worthy of celebration. Did you call yours strong? I proudly wore ball gowns to the library. I smiled coyly, confidently for school photos. I propped myself against the couch and conducted dance classes for my imaginary pupils with a steady, poised hand. It was only after I spent more time in a world that consistently read me as undesirable, helpless, pitiable, that I began to see myself as something other than beautiful. To live in a world that operates on a tight grid, categorizing bodies into tiny slots—“If you look this way, you fit here, if you move that way, you belong there”—suffocates nearly all of us. What would it mean if we were able to pick our own slots? What happens if we break open the grid?

“You mention in your profile that you’ve used a walker and a chair since you were young,” Micah messaged me after a few online exchanges. “How has that shaped your life? Maybe it’s a ridiculous request, asking you to fit such a large matter into a typed message, and maybe there’s a more polite way to be curious about such a situation, but curious I am, and so I ask.” This made me pause. It felt different. It wasn’t rushing to assist my body. It wasn’t anything like the blind assertion that my body meant nothing. It didn’t assume I was anxious to fix my body. It was curiosity about a body that held stories—stories that he wanted my help to read.

We are more than our bodies. We also have these miraculous bodies. I want to live in a world that does not objectify bodies. I also want to live in a world that allows all bodies to be beautiful objects. I don’t want bodies to be erased, but I also don’t want them to be read without the voice of the owner dictating the narrative. I don’t know how this fits together, but I do wonder what it would feel like if we looked at bodies as records of stories. Try this on with me: bodies as evidence of the nights you stayed up grading papers or writing your thesis or talking to that boy until you could hear the morning birds singing, the millions of times your sister made you laugh until you cried, the grief that ripped through your gut and out all your pores when your grandmother died, the hundreds of greasy pizzas you consumed with the friends who reminded you how to enjoy life. The cancer you beat, the habits you kicked, the wars you survived, the fires that did not consume you, the losses that bent your spine but didn’t break it. Our bodies display resilience as they record and carry, sag and stretch, bloat and shrivel, shine and crack, under the weight of our stories. Bodies as beautiful objects—worth displaying, not because they align with a very narrow standard in contour and shade, but because they have lived. What would that feel like? What would that change?

My niece found a lump in her breast last year. The doctor sliced deeply into her young, unmarred body to cut it out, and she grieved the big scar that now scrawled across her body. When she expressed her sense of loss, I understood, and I reeled. If I had feathers, they would have plumed across the span of my body with primal fury at a world that taught her a big scar was lamentable. When I was young, I remember hearing a lot about my “inner beauty,” my “beautiful heart”—the consolation prizes for ugly girls. I won’t tell my niece that it doesn’t matter what she looks like on the outside. How can it not? At the same time, I don’t think her scar mars her. You are beautiful, will always be beautiful, can be nothing but beautiful as long as you live, and I want you to keep living as bravely and loudly as you can stand, even if it means wounds and stretch marks and ten thousand wrinkles, I wanted to shout. Instead, I said, “I think that scar is evidence that your body has survived some pretty horrific stuff, and that’s beautiful.” I wonder if she believed me for even one second.

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