Sarah Sunfire is a New Orleans native, currently living in San Francisco. They hold an MA in Children’s Literature from Hollins University and have had work published in Burning House Press, Midway Journal, The Stranger, and Ms. magazine. They also keep an oft-updated newsletter on ablism in the world and in pop culture—as well as body-related essays generally— called Hot and Disabled. Feel free to subscribe at https://sarahsunfire.substack.com.

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sarah sunfire

I still believe vampires are real, but when I was a teenager I dressed like I knew it. As a New Orleans native, it was easy to understand that the otherworldly people who roamed the French Quarter late at night weren’t people at all; talk to anyone who lived there before Katrina and they will confirm this. I couldn’t call to Lestat from school, because on weekdays, I had to contend with the ugliest school uniform ever devised in the name of abstinence. Monday through Friday from some ungodly morning hour until far too late, I wore a gray pleated skirt meant to eliminate the very idea of legs or shapely calves, and a boxy starched white shirt that effectively obliterated curves. Add a pair of crutches that I need because I was born with cerebral palsy and red hair that frizzes out to the far reaches of space in New Orleans humidity, and you’ve got a combination so hideous that it would’ve been funny if it hadn’t been so humiliating. My aunt Beth, now in her seventies, was reminiscing to me recently about the ugliness of this uniform and gleefully proclaimed, “That maroon cardigan sweater sure looked good with your red hair!” Then the weekend swept us up and I was free.

One of my favorite outfits was a black velvet corset with straps adorned with butterflies—the straps and the butterflies were black velvet too. I wore it with a black velvet miniskirt slitted up the thigh—or a long form-fitting black velvet skirt with a higher slit in the thigh—and black velvet boots that had black ribbons for laces. When I walked around like that, my crutches didn’t feel like they mattered so much, and even more urgently, Lestat and his legions of local emissaries knew I was ripe and waiting, all that warm blood, etc.

Given my father’s tendency to overprotect me—me, his daughter; me, his visibly disabled daughter; me, his only child—it’s surprising that he footed the bill for a leather dress from Second Skin, the BDSM-oriented sex shop that provided New Orleans denizens and tourists with anything made of leather, latex, or silver chains that we could possibly need. This dress was made of real leather (black, of course), but it was less expensive than anything else in the shop because of two wide strips down each side made of sheer black nylon. It was absurdly short, and had only one zipper, which ran from the top of the low neck to the bottom of the dress. “Easy access,” my high school friend Ruth whispered to me lasciviously, which, when I got my first boyfriend, would prove true, but I was thinking less about action when I bought it than I was about fantasies. Fantasies involving leather. Perhaps those started earlier than they should have, certainly earlier than my dad would have preferred, but fantasy held more power in those days than anything I could touch, and what I could feel with my inescapable earthly fingers was meant to make those fantasies real. Fantasy was the only realm I could rely on to feel pretty. There was no being beautiful in that school uniform, not for me, with these crutches, this gait. The epic poet Homer said that you could tell a goddess “by her gait,” and I was convinced that this was how you could tell a monster, too.

Amidst all this despair and body-loathing, there was one amusing upshot of our tragic school uniforms: they turned Spirit Week into a school-wide event, during which we appeared to overflow over with De La Salle Cavalier pride. Every themed day meant liberation from our uniforms, and there wasn’t a single student who didn’t take advantage of this. On Camouflage Day, campus looked like a military base. But the most exciting of these any-excuse-to-ditch-the-maroon-and-grey days was 60s, 70s, and 80s Day. That’s not three days, to be clear. It’s one: a decade for everybody.

I wore a plaid miniskirt (a subtle fuck you to my school uniform) and a black spaghetti-strapped tank top with a black see-through blouse over it. But the pièce de résistance was a pair of black vinyl thigh highs. Worn with black chunky-heeled Mary Janes, they looked like legitimate thigh-high boots.

“Are you supposed to be, like, Madonna?” one of my classmates asked me, thereby making my day and my year. Then a second classmate, whose name I can’t remember, made the rest of my life by asking me, “Are you supposed to be, like, Janet Jackson?” I could write a book about my lifelong adoration for Janet Jackson. She was my go-to reference for sensual existence starting with the release of the immortal album Janet. She still is. I shouted, “YES!” in a moment of true ecstasy I never thought I could feel at school.

I can’t write a whole essay about fashion and disability and bodyness without mentioning that there was never a moment that I had breasts that they weren’t noticeably massive. I’m probably not supposed to say I wanted them recognized, but I did, and you could tell that by my other favorite piece of spaghetti-strapped clothing, a wine-red velvet tank top. “That is a nice shirt,” a taxi driver once said to me. A pervy remark in retrospect, but the fact is, I liked being noticed. If my tits are the focus, the crutches disappear, and getting them to disappear mattered.

The Goods were remarked upon much more satisfyingly on the night of our eighth-grade induction into the National Honors’ Society. I was sitting with two equally nerdy friends, honey-spirited girls whom I had never heard mention sex or sexuality at all. In order to pick up the certificate documenting my genius, I had to traverse the whole of the school cafeteria. When I returned to my seat with my paper in hand, one of my sweet friends nonchalantly observed, “You have nice boobs, Sarah, I wish mine were that big.”

I have a loud laugh by nature, but my reaction to his unexpected bit of crass flattery came dangerously close to disrupting the event. Just as I caught my breath long enough to ensure that I wouldn’t laugh the proud parents out of harmony, our other friend, the embodiment of heterosexuality, looked at me and said, “Well, now that we’re all thinking about it, I have to agree with her.” Every time I saw that top again after that—navy blue nylon, dotted with black velvet flowers, dramatically form-fitting with a wide scoop neck—I thought of that dual compliment. I kept that top until it was threadbare, wearing it well into college.

Decades later, I was sitting in the seat of a punk hairdresser and we were talking about beauty standards and body-related norms. I mentioned that under no circumstances could I open a magazine and see a body like mine, growing up or any time.

“Did that set you free?” she asked me. “Since you have a disability were you like, ‘I don’t have to bother with any of this?’” What kind of adolescence might I have had, I wonder, if I had reacted that way? If I had opened those magazines and said, “I exist in a physically different world than the one your normative asses are assuming and I want no part in the constraints you’re implying with these photos. Imagine the power in using my own body to set myself free.

I told my hairdresser, Kaley, that it wasn’t like that at all. Because I had a disability I was hyperdisconnected from what those magazines called Beauty, and I believed those magazines. I had no idea that they were hawked by groups of market-researchers in cahoots with cosmetics companies, striving to make a buck. I thought they spoke truth, and the truth was, a body like yours does not belong. It is not even acknowledged. We would, on the whole, rather it didn’t exist.

It took a long, long time to get over that. It took several bouts of severe depression, deep-dive sessions with a physically disabled therapist, and, at last, go-hard afternoons with my life-altering personal trainer who helped me see my body in terms of my capabilities, rather than my limitations (and everyone, I’ve finally learned, has physical limitations).

My SideStix helped too. Yonder lies a nation called Canada wherein a thoughtful and dedicated company makes custom-fit crutches that enable more fluid movement, less shoulder pressure, and other concrete benefits that aide in athleticism. (On the company’s website, an athlete with one leg is doing a backflip with his SideStix.) I eyed that company for years before I finally had the money to pay for the fruits of several different exact measurements. They ask for the distance of your middle finger to your wrist for the perfect arm-cuff length and other individualized specifics. They also ask for the measurements from your old crutches. When I sent those in, I got a dismayed call from British Columbia.

“There’s a notable discrepancy between the measurements you gave us and the measurements of your current crutches,” he said, referring to my height as relative to the crutch.

I sighed and explained that in America, we really don’t do custom crutches. The philosophy is not, “Go beyond your perceived limits, potential athlete!” so much as, “Sucks to be you, a cripple, here’s some equipment you apparently need to go do whatever people like you do.” No matter how diligently I stick to my ever-intensifying workout routine, I still get old people stopping me in the street to compare themselves to me, saying they thought they had it bad because they’ve aged, but I have it worse, look at me.

It hurts to know that even as I feel more comfortable in my body than I’ve ever thought possible, there will always be people determined to see me as injury incarnate, downtrodden. I know that’s a fly on the wall of their vision and nothing to do with me, but that, too, took me a long time to understand. Some people see truth, some people see lies. The notion that I have nothing to be physically grateful for, that I am not free, that I should want to be other people, is a lie. It’s a lie I told myself for a very long time, aided by those damn magazines.

Sidestix cut an elegant figure: they have ergonomic handles made of cork, they’re sleek and black. Mine, because they fit to my actual size, are short. I don’t really see them as a part of how I style myself, but I also don’t see them as a detriment to my stylishness the way I used to. One night after work on the 44 bus, a warm voice remarked, “I like your crutches,” and I made a friend that way—one of my few friends who has a physical disability. I felt vindicated knowing that my Stix elegance is perceptible, because it’s not a kind of elegance we talk about. As a teenager, it wouldn’t have been the kind of elegance I wanted to talk about. Crutches were, for so, so long, akin to a coat that ruined my otherwise regal Cleopatra Halloween costume, drawing attention away from the long gold form-fitting one-shoulder dress and the shimmering golden snake-crown.

None of the pretty girls had crutches, as I saw it. And pretty mattered. Pretty mattered so so so much, much more than the brains I knew I had.

I’ve since learned that this is lightyears from the truth; there are scores of kickass women with physical disabilities the world over. But you wouldn’t know that to watch TV, would you? I’ve seen casual ableism on shows that are otherwise progressive. People still fear these bodies. They still don’t want to think about what might happen if they one day woke up in one, as anyone could.

I’ve come to embrace physical disability as an ode to interdependence and a stance against oppressive notions of individualism and profit-motivated “productivity.” I feel fortunate that my body makes a political statement without my having to do a whole lot. I need help carrying a hot drink to my table at the café (because of the crutch handles) and bam, gone are all illusions that we’re not in this together.

I hear a lot of complaints about supposed pressure to “be perfect.” This is a foreign notion to me, and even a satirical one. My whole life, the very atmosphere, has whispered that I am imperfect and I will always be. What I didn’t realize before now is that this is true of everyone. It doesn’t make us any less of the wonders that we are. And so, here I am with four surgical scars, no illusions of a possible perfection that’s only out of reach because I can’t get to it, and, at last, real understanding that any condescension I receive from pitying old people or magazine-approved normies is their problem.

I no longer use fashion to detract from what about my body makes it absolutely mine. My favorite clothes these days are my workout getups, which rapturously draw on self-aware garishness to show off the muscles I’m building. My favorite sports bra is splashed with neon turquoise and hot pink palm trees on a black background, typically worn with neon turquoise yoga pants. If it’s hot outside, I’ll pair a black, navy, or dark grey sports bra with shorts that basically scream, “I didn’t work out these glutes so no one would notice,” but for all that they’re unassuming articles, soft movable fabric in subtle colors, held up by a simple drawstring.

In my youth I would’ve assumed that I’d be less appealing to vampires when I was dressed for the gym. But who knows? Getting your heart-rate up does improve blood flow. In my youth I would’ve assumed that I couldn’t have entered a gym at all, and that if I didn’t get laughed out of the place the machines would be too much trouble to be worth it. I never realized I could build muscle, I could push myself and feel good about it, I could go to the sauna afterwards and sweat an ocean, feel my body transforming in the heat. Maybe that was the secret all along: not to wait around for a vampire to fulfill their mythic promise of eternity, but for me to discover that a brand new hypersensory life can begin any time. And the best part is, I didn’t have to wait. I just had to get moving.