I Have An Invisible Illness. Here's How One Photoshoot Made Me Feel Seen.
I’m nervous as I cross the Bay Bridge into San Francisco. I tap my hand to the beat of the music against the gear shift, foot pushing down on the gas. I have extra outfits piled in the backseat so the photographer I’m shooting with can decide what he wants me to wear during the fashion shoot, one we've scheduled to develop both our portfolios — him as a photographer, me as a model. It's my first real fashion shoot since I began using a wheelchair, and I'm feeling anxious about whether or not I'm physically up for it. Sean and I haven’t met in person yet, even though we’ve known each other online for almost a year. Meeting people for the first time always fills my head with questions: Will the conversation flow smoothly? If it’s uncomfortable, how long do I have to stick around until it’s polite enough for me to leave? Today, though, one worry overshadows the others. Today, I’m worried about my wheelchair.
I’m a part-time wheelchair user with a collagen disorder called Ehlers-Danlos Syndrome (EDS). To put it simply, collagen is the brick and mortar that make up every single part of our bodies, and my collagen is built incorrectly at a genetic level. Every patient expresses EDS symptoms differently. My primary symptom is unexpected joint dislocations. EDS patients often have co-morbidities (multiple diseases co-existing simultaneously in one person)- and I am no exception. I also deal with Postural Orthostatic Tachycardic Syndrome (POTS), a condition that causes me to faint when I stand for too long.
Despite all of that, I don’t “look” disabled. My illnesses are invisible illnesses, because there are no visual cues that I am plagued by chronic pain and fainting spells. Most doctors I've encountered are unfamiliar with my diseases; I wasn’t diagnosed until I was 26, even though I began showing symptoms from infancy. EDS and POTS are classified as rare diseases that trained medical professionals often don’t recognize or understand. Sometimes even my close friends and family struggle to understand how I can be fine one moment and in excruciating pain the next — especially when it seems to them as though nothing has actually changed. When I ask for accessibility options in public, I’m continually met with derision or the demand that I prove my illness. I can't help but mull over my experiences with non-disabled people doubting me as I'm en route to meet the photographer for this shoot. Will Sean be able to grasp the nuances of my disability? More importantly, will he care?
Driving that day, I hear the clunking of my wheelchair in the trunk every time I hit my brakes. I’ve modeled for photographers before, and I know a shoot can be surprisingly demanding. Standing, sitting, staying still, changing clothes, and trekking from one site to another to get the image just right often makes for a rigorous day. Despite this, there’s always an indescribable flash of excitement when I finally get to hold the finished product in my hands.
Working casually as a model for other photographers has gradually changed the way I view photography. I’m acutely aware of the images that surround us. I’ve started shooting, too; my cameras are also buried in the pile of clothes in the backseat. Every time I look at a picture, I wonder how the photographer achieved it. Perhaps more importantly, my work modeling and shooting has attuned me to the reality that what has been represented as the ideal human form in movies and advertising is a reflection of who is considered socially acceptable. Stigmas have contributed to the erasure of too many groups to count. It took years for women to be represented in advertising as anything other than submissive wives. The fight to include people of color, Asians, LGBTQIA+ people, fat people, and old people continues to be waged — but at least it feels like something people are talking about. All too often, disabled people are completely left out of the conversation, even though we make up 20 percent of the world population. As a disabled femme, it’s hard for me to ignore that disability is so rarely portrayed as something desirable or beautiful that there aren’t even statistics showing how infrequently we show up.
I’m thinking about my role as a disabled model as I pull over. Sean hops into the passenger seat. We reach across the center console and hug before slipping into easy conversation, almost as if we have known each other in person for as long as we’ve been friends online. We cross Market Street and park, wandering on foot for a backdrop. The wind is blowing across my eyelashes and the day is fierce, bright sunshine as Sean’s shutter clicks a rapid staccato.
Our trek leads us up several steep hills before Sean exclaims excitedly as he points out a real estate business with windows so reflective it’s like standing in front of a lit mirror. I vamp for the camera, the wind cool against my fresh undercut as it blows my bangs away from my face, smacking my lips together after applying crimson lipstick. The people inside the office can definitely see our impromptu photo shoot, but I’m having too much fun to care.
After a little while, the heat beating down on my bare skin becomes almost unbearable and I feel a flash of dizziness. I don’t want to faint. I wonder what Sean will say if I ask him to go back to the car with me to get my wheelchair. My heart lurches in my chest, from tachycardia and fear. Fear of being vulnerable, of revealing my disability, of not being believed. Finally, I speak up.
“Do you mind if we go get my chair…?”
Sean immediately stops shooting and we make the quick walk back to the car. He bends down, wondering if he can help me assemble my wheelchair, but I’m an old pro after a year of putting it together myself. Sitting down is a relief and I can feel the buzz of adrenaline cooling as the spinning in my head slows. As we head back to the reflective windows, I let Sean help push me up the steep hills even though I almost want to fold in on myself from the shame of asking for help, though he doesn’t seem to mind at all.
As we slip back into the swing of shooting, curious tourists linger on the corner. At first, I feel shy, trying not to make eye contact with any of them. Sean encourages me to move around, sitting and popping wheelies in the chair, tipping myself as far back as I can. Then he has me stand, posing with one foot in the seat, my back straight and tall. Eventually, I can’t help the smile that crosses my face. I feel strong and glamorous in my wheelchair, tourists be damned.
To finish the day, we head to Golden Gate Park to watch the sun set between the pine and cypress trees. Spring is in full bloom here, the tree trunks casting long shadows across lush grass dappled with dew. As I stand in a shaft of golden hour sunlight, I push my thumb against the black lever that advances the film in my own camera, white analog numbers climbing to count the number of pictures I’ve taken. The shutter clicks and I imagine the photographs Sean took. There are not many images out there that cast bodies like mine as anything other than broken. But in this moment, I feel as though I am anything but weak. I am vibrant, beautiful, and mighty. The clothes - the lace, the jeans, the sheer cotton - are moot. I felt completely comfortable in my own skin as I stared down the camera.
My day may have had moments of trepidation and anxiety, but I overcame my vulnerability and asked for what I needed despite my fear in order to make the diverse images I know the world needs. Perhaps there will be a moment where these pictures of me in a wheelchair, looking simultaneously playful and alluring, will help someone else who is disabled feel encouraged to normalize their own beauty in pictures, to recognize that their disabled body can be magnificent, too. As the sun slips below the horizon, I dream of a future where disabled bodies like mine are permanently part of the pantheon of beauty.