On the day of the shoot, I am ready. I’ve been watching what I eat and exercising for the first time since I was 16. I’ve been spending so many hours on Pinterest that I found a bodysuit so perfect for me that we share the same name. By the time I get to the studio space in Manhattan, I have already survived a frantic morning searching for my wallet, and a Starbucks so crowded I had to leave without my order. I am minus a cake pop, but ready to execute my vision.
By afternoon, I’m in a sparkling pink sequin dress. As I transfer into the white wooden chair I’ll be posing in, I cut my new, barely healed tattoo on the foot tread of my wheelchair. It draws blood that will not stop pouring down my leg. I curse at my chair and cringe thinking about the touchup I’ll have to endure and the extra work the photographer will have to do to edit out the gash.
That fucking chair. Does it have to make everything difficult?
I hate that chair, but I know it needs to be in some of these pictures. I cannot make a photographic statement about being a woman and having a disability without it.
I’m here in this studio to define “sexy” for myself by creating images that will show me as sexy, or at least help me understand what that might feel like. I’m tired of feeling bitter toward magazine photos that show me over and over again that sexy is for able bodies. Sexy is for other girls. Sexy isn’t for me. That message has been ingrained in me from so many places, it’s almost embedded in my physical body.
* * *
By my junior year of high school, I was convinced that when people looked at me, all they saw was a girl in a wheelchair. I was the only one in the whole school. I wanted so badly to somehow make my disability disappear, while simultaneously making my body stand out. Like any teenager, I wanted to be seen. I wanted people to notice my body. But nothing I tried worked. Not bleaching my hair a gross orange color somewhere between brown and blonde. Not the belly button ring that peeked out from under a DKNY t-shirt. Not even starving myself.
Once, I came to on the cold kitchen floor and managed to pull myself up to a seat right as my parents got home. When they came inside, everyone greeted me normally, because nothing was wrong. They saw me sitting on the pew eating Cheez-Its. Not ravenous, desperate and dizzy like I was on the inside. I couldn’t help but wonder how this scene would’ve been different had they got home just seconds earlier, when I was lying unconscious on the floor. Would I have been rushed to the hospital? Would someone have finally noticed I was starving myself? Could “the girl in the wheelchair” be “the anorexic girl,” too?
It would’ve been my proudest achievement at that point. College entrance test pressure was building and I found pro-ana blogs that were encouraging my disordered eating. I was beginning to feel how much it hurt to be different for the first time in my life. I was never going to get a five-minute break from needing a wheelchair or a walker to move around. There was no way to escape my body or transform it into one that society would find acceptable. I was trying very hard to do either one. But no one noticed my pain…or my body. I was just my chair.
Nothing I did got the boys I liked to notice me, or stopped tactless strangers from telling me I should think of a “cooler” story than “I was born like this” to explain why I was a wheelchair user.
The eating disorder diagnosis I coveted never came. Starving oneself is not as glamorous as Hollywood makes it seem, and I eventually grew out of disordered eating behavior. But my desire to be seen before my mobility equipment has never left me.
* * *
The first time I was “seen” the way my teenage self longed to be seen didn’t exactly play out the way I hoped. It was Cinco de Mayo, my senior year of college, and I was studying in my dorm room, wearing Mickey Mouse pajamas and listening to Hanson. “I think I’m gonna have a beer,” I said to my neighbor, Liv. She lived in the next room, but we left our doors open and talked through the walls so much we were essentially roommates. “It’s Cinco de Mayo and I had a rough day. I deserve a beer.”
I turned from my computer and went to my fridge, convincing myself I’d earned it without waiting for her reply. “This room’s a fucking mess,” an unfamiliar male voice said. I whipped my chair around, startled.
I had never seen this person before in my life. He was a drunk stray who had wandered away from the room he was partying in and invited himself into mine, drawn in by the open door and now mesmerized by the mess.
“I know,” I shrugged. There was no point denying it and I wanted some entertainment. “Who are you?”
“What is this thing?” He walked across the room and sat in my walker.
“It’s a walker. I need it to get around,” I said. He hadn’t earned my boring story. “Can you maybe not sit in it?”
He ignored me and my guard went up. Most people don’t understand how complicated the relationship is between a girl and her mobility equipment. I’m dependent on it; it’s always with me. It’s like family: I don’t choose it, I may not even like it sometimes, but I am sure as hell going to protect it from drunk strangers who might puke all over it.
Instead of moving, he said, “You’re cute.” I was almost 22 and it was the first time a guy had ever almost-sincerely expressed attraction to me.
This made me feel a little bit embarrassed and a lot confused. I blinked down at my sequined Mickey pajama top and matching pants. “Thaaaanks…”
And then he said, “We should have sex.” He was matter-of-fact, not threatening. I was amused more than anything else, but he needed to leave.
“I think we shouldn’t,” I said firmly. Liv had ventured out in the hallway to watch the show, which ended rather flatly when I finally got the stray to leave.
“Dude, I would have gone for it,” Liv teased from my doorway. I shrugged and she headed back to her room. She wouldn’t have, and we both knew it.
The nervous butterflies I’d felt throughout the exchange never morphed into real fear, but I was relieved he was gone. I’d imagined the first time a guy paid attention to me many times over the years. As I grew up, my daydreams had matured from a note passed in class – “do you like me?” with the option to choose “yes” or “no” – to being asked on a date while at my locker to being asked on a date anywhere. Rarely did my fantasies ever involve a complete stranger, and he was definitely never wasted. It was at once exciting and devastating. On one hand, it was validation. “I’m not invisible; I am attractive.” On the other hand, he was drunk. I wasn’t sure if he knew what he was looking at, but I doubted it. So, I didn’t know if this counted as attraction, or if it counted as anything at all.
I laughed about it, but it hurt, too. I understood that it wasn’t rare to get hit on by a drunk guy. But most girls had already had some version of both my elementary and high school fantasies happen to them before they got the drunk college dorm proposition. Most girls didn’t have to wonder if the attraction expressed counted for anything at all. All I ever wanted was to be like most girls. I went to bed wondering if that would ever happen for me.
* * *
I stayed late after my 10-year high school reunion to wait for my friend Allison, who had to clean up. I’d been sitting on the same bench all night, drinking French martinis. The room was nearly empty when Isaac sat on the bench next to me. We talked for a while, and then he asked if he could kiss me.
It was nice. I knew he was hot and I was…not. I hadn’t planned on staying long at all, let alone getting trashed and making out with someone. So I’d thrown on a comfortable teal sweater without much thought. I tried to put on some makeup, but I usually get impatient before I achieve much of anything beyond a layer of eye shadow and some lip-gloss.
It was my first kiss, and it was nice. While I was happy to finally check “kiss someone” off the list of life milestones, I knew that the kiss didn’t really mean anything; we were both drunk. It just felt nice.
The next morning, my mind bombarded me with the same questions I’d had in college after the stray left my room: “How much did it count? How much did I count?”
Both times that I’d felt “seen” by men, I’d been left with doubts – because alcohol was involved, and because I felt like I looked bad.
That’s when I got the idea to plan a photoshoot to force myself and others to see me and sexy at the same time. I knew others could achieve that goal while in their wheelchairs, but I wasn’t sure I could, because I never had before. I relished the idea of putting on more than one layer of makeup and dressing up in clothes that were “magazine sexy.” But beyond that, I wondered if putting on “sexy” would actually make me feel sexy.
* * *
The shoot is one of the best days of my life – creating art to help me discover a new layer of myself.
But a month later when the pictures come, I take days to open the email, wanting the sick feeling in my stomach to subside first. When I finally muster up the courage, I am horrified. I had done my best to transcend the “disabled girl” label with these pictures, to scrub it from its place under my skin and just be. But disability is all I see. My legs make weird shapes and my posture sucks and on top of that, the dress makes me look fat.
I write all of this in a panicked email I sent to a friend late that night. She’s achieved a level of success I dream about, she’s gorgeous, and she knows what a differently-abled body feels like. Her opinion matters to me.
She makes me write a list of my favorite things about the pictures. I love the red lips. I like all the clothes. My hair looks good, especially down. I honestly like the art, hate the model. But the more I look, the easier it is to see myself.
I went into this project with a very clear idea of what I wanted to achieve. I thought I’d get dressed up, put on nice clothes, let someone do my hair and makeup, and suddenly feel attractive – instantly make other people see a person instead of a disability. As I stare at my computer screen, I’m not quite sure I’ve reached my goal. All I feel is more human. If I’m looking at the right photo, I see a woman. Disabled people further on in their self-acceptance journey have already had that revelation: You are human, you are a woman. I had not. Until now.
These photos don’t change everything. They don’t erase a lifetime of insecurity and uncertainty. But they do bring me some peace. It’s comforting to know it’s possible to be disabled and not always let that define me. Or to pose oddly in a photo but still feel pretty. And more importantly, I’ve realized it doesn’t matter if other people know that or not. That is not where I thought I’d be at the end of this journey. But it’s a long way from the cold kitchen floor hoping someone would notice me, trying to make the disabled girl disappear.