I’ll Never Be ‘Normal,’ Get Over It

Emily Rapp has a disability, but that doesn’t give people the right to scrutinize her body.

“Hey, how come you’re parking there?” A woman asked me recently as I got out of my car in the handicapped/disabled/definitely abled/differently abled parking spot in front of my gym in Santa Fe. There was an edge in her voice. I normally try to be friendly when people assume things about women with disabilities, but it just happened to be one of those days where I’d had it.

“You know, crippled people like to workout, too,” I said, and lifted the left leg of my overpriced yoga pants to reveal a different shade of leg, the stocking that covers my prosthesis. I tossed my hair and jetted through the glass doors to meet my trainer, feeling only slightly guilty.

People have been interrogating me about the finer points of my body for most of my remembered life, and most of the time I’ve tried to respond politely, to educate (This is the new face of disability! I always thought as I detailed my rote response regarding origin of disability, the advancing state of artificial limb technology, etc.), but sometimes I grow weary of being nice, tired of being available for these kinds of interrogations with literal strangers.

Here’s the truth: Just as “normal” bodies vary in terms of shape and athleticism, so do disabled people. That’s right. We don’t all look the same (and neither do redheads, another assumption people make), we’re not always suffering and in pain, we don’t all hate our bodies (although we may have complicated relationships with it), and we are often fit, healthy, and yes, imagine this, happy. We are not a horde of “the disabled,” descending upon the social security system, preparing to sap able-bodied people’s medical opportunities dry with our fancy special needs, although you certainly wouldn’t know that from the way the media often discusses us, or from the way we’re treated walking through security checkpoints, where everybody’s nervousness about disability is blatantly revealed.

I’ve been on an airplane at least once a month, sometimes more, for almost six months. Here’s a direct quote from a TSA agent in Denver, after she’d taken me into a private screening room and instructed me to pull down my pants, “I’ve never seen one of you before.” My response—“You mean a hot, half-dressed woman in a small room? It’s your lucky day!”—was deeply unappreciated, and the rest of the exam (to ensure I wasn’t hoarding bombs in the hollow part of my leg or plotting some other kind of terrorist warfare, presumably) was conducted in utter silence.

Even my question about whether or not people who had lost limbs fighting for our country were put through the same humiliating rigmarole was met with serious stink eye. I’ve become accustomed to the probing, because I don’t have a choice. Fifteen years ago in an obscure African airport, the security lady hauled me into a room and proceeded to feel me up, paying special attention to my breasts, which she handled like doorknobs. No attention to the leg at all. “You can go,” she said, and boy, did I. My boss wanted us to go back, to confront her, but I was already sick with malaria, had some kind of horrifying ooze leaking from my eye, and had just been bitten on the arm by a large spider that looked poisonous enough to be worrisome. “It’s not worth it!” I urged, and dragged him down the jetway.

Does this kind of attention and scrutiny and outright prurient interest affect those of us who have bodies that attract onlookers (and not in a swimsuit model kind of way) at public pools? Yes. My reply to the TSA agent was full of defiance, but of course some of it is faked. I am a woman living in a world where a woman’s appearance is still, whatever we might say, directly linked with her value and desirability. A world where people use “crippling” and “amputation” as metaphors: My shyness is crippling; My loss makes me feel like I’ve had a limb amputated; that’s so lame, etc. I have been conscious of being on the perimeters of attractiveness standards since I’ve been conscious of being different, which was a long time ago.

Believe me, I’ve spent hours of my life staring at photographs of women in magazines or looking at live women in the world, and with a blind terror, a whopping dose of self-consciousness and shame, and an extra dose of self-loathing, wishing that I could look anything but like myself. Sometimes I still do. I’ll never forget my grandmother saying to me one morning in junior high as I walked down the stairs in the green J. Crew dress I’d ordered from a catalogue and was convinced I was rocking: “It’s a good thing you’re smart.”

Shame is the only human emotion that must be learned, programmed, and this was an early lesson that there would always be something wrong with me. It’s a feeling that has never left me. Not once. To this day, at nearly 40 years old, I have utter confidence in my brain and absolutely zero in my physical appearance. Does this make sense? Of course not. Does it feel true? Of course. Do these feelings make me afraid to leave my home? No, but it makes me a different person when I return to it. The only reason I agreed to apply for a disability parking placard (years after I’d left Los Angeles, where I really could have made use of it), was because I decided that there’s got to be some perk to this experience, even if it’s as seemingly trivial as not having to worry about finding a parking space at Trader Joe’s.

So yes, in thinking about my body I often plead, “God save me from the bondage of self and from my hopelessly neurotic brain,” but other times I just dig my body and am proud of it, like anyone else who moves around, has a good hair day, or gets compliments on a new pair of jeans. I love to dance, do yoga, spin, run—all of the athletic activities I would have no doubt done as an “able-bodied” person but instead have figured out how to do my own way, even if I look like an uncoordinated monkey while doing it. I’m still a bit of a gym rat, and it’s there, strangely, where I feel at my best and strongest, even though I’m working “against” a body shape (if you view it that way) that can never be changed. I might not look like Natalie Portman in Black Swan or a super bendy famous yogini making perfect pretzels on my yoga mat, but I’m out there. Doing something. I’m proud of that. Physical activity has built within me fortitude, discipline, and literal strength, just as I believe that my feelings of being an outsider—of acute and careful observation—made me into a writer.

So these are just some of the lessons disability has taught me, gifts it’s given me. But it’s also given me angst, self-consciousness, shame, and body hatred that led me to starve myself for years as a teenager, just trying to make “it”—the body—right. It’s made me doubt that I would ever be a full woman worthy of love, even with accomplishments, brains, friends, family, partners. It’s led to disastrous choices in life and love, and it’s the main cause of suffering I create for myself. In short, these concerns about the body have kept me (and sometimes still do) from being happy moment to moment, from noticing the beauty in my own life. That misstep, actually, is the truly shameful part, and it’s the one that all of us—disabled are not—are most likely working on.

While I was writing this in a coffee shop, a man approached me and said, “Hey, do you wear a prosthetic limb?” just as I was shoving a piece of blueberry muffin into my mouth.

I nodded. “I do,” I said, swallowing.

“Well,” he said, and looked me over. “You sure handle yourself well. You sure get around well. And you sure are pretty.” He seemed surprised by all of these conclusions, and he seemed surprised that I wasn’t surprised at what he’d said. He was friendly enough— “Hope that wasn’t too weird?” he asked as I started working again, and it wasn’t, not really, but it proves my point.

What you think you’re going to see is not always what you get.

Emily Rapp, a regular contributor to Role/Reboot, is the author of Poster Child: A Memoir (BloomsburyUSA, 2007) and The Still Point of the Turning World (Penguin Press, March 2013). She is a professor of creative writing and literature at the Santa Fe University of Art and Design in Santa Fe, New Mexico.

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