The Day I Bared My Disability Wearing Nothing but Eyeliner and Pearls

Editor’s note: This article includes a photo that shows nudity.

Disrobing in a dusty, boarded-up hotel for a complete stranger didn’t bother me. But when the cops showed up, I have to admit it got a little weird.

But before we get to that, let me tell you a little about myself. I was born non-disabled. Then one day when I was 8 years old, I awoke and could barely raise my left arm. Pain – deep, sharp and gnawing — had settled into my shoulder. I found it baffling. My parents dismissed it as one-too-many handstands. They were sure it would go away. But days turned to weeks turned to more than a month, and my pain only grew worse. The tomboy who used to climb trees as well as any of the neighborhood boys was earthbound.

Rheumatoid arthritis hijacked my entire body, from my jaw down to my toes. Over the next five years, the arthritis roared like a freight train: catastrophic, unstoppable. I lived with severe pain every day. No drug or therapy had any effect. By high school, my shoulders, hips and knees were destroyed. The summer before I turned 16 – while my friends were getting their drivers’ licenses – I had both of my hips replaced.

During my adolescence, I had no one to talk to, no manual to consult about not only becoming a woman, but a disabled woman. The only time my body was discussed was in the context of medical treatment. Life as a patient meant a lot of disrobing and examinations. I felt like an inanimate object to be stared at, poked and prodded by docs, nurses, X-ray techs, PTs, etc. In fact, my arthritis clinic was used to teach medical students.

One time when a particularly cute male med student was observing, my doctor commanded me to walk down a hallway so he could observe my gimpy gait. While strutting along the “catwalk,” I felt a breeze behind me. I ignored it and made my turn, walking back toward the group of white lab coats. Then more breeze. The gown was coming untied, I was certain. I could feel it gaping open to reveal my granny panties. My face grew hot with embarrassment. Adolescent girls’ diaries should be inscribed with purple prose about secret unrequited crushes, not about the shame of being used as a visual aid while wearing a hospital gown.

And body shame was my constant companion for years. I used to think acceptance was an all-or-nothing thing: you either accepted something completely or not at all. I eventually learned that it’s much more layered and complex than that. Even after I thought I’d accepted my disability, I still felt pressured to pass as non-disabled. I forced myself to walk when I should have used a wheelchair. I tried to hide my scars. I was hesitant to let others know when I couldn’t physically do something. I felt ashamed simply for being different because different meant inferior.

Which brings me back to the dusty hotel getting naked for a photographer I’d only just met. What brought me there was the opportunity to participate in something transformative. The Bold Beauty Project is a powerful, visual arts exhibition that features women with disabilities. Through the photographer’s lens and the women’s personal stories, the project seeks to raise awareness of women’s strength, sensuality and spirit, and in the process, change perceptions of beauty. The result has been professional photography exhibits in major cities, including New York, Washington, D.C. and Miami.

I was over the moon when invited to be one of the models. Then my mind began to swirl. What look should I go for? What backdrop should we use? Most importantly, how much skin should I bare? I was in the driver’s seat for it all.

The women I’ve envied for their beauty emit both strength and confidence. I remember the early days of MTV when Joan Jett appeared in both skimpy bikini and boxing gloves in her “Do You Wanna Touch Me” video. She’s both a smoking-hot rock chick and a force to be reckoned with. In her “Demolition Man” video, Grace Jones with her angular face, wide shoulders and jagged movements is masculine-strong yet undeniably female. She’s an androgynous, nuclear sex bomb, later a Bond girl who rides atop 007.

For my Bold Beauty shoot, I wanted to embody the spirit of a rocker chick, a punk girl challenging the establishment. I wanted to take what others might see as weakness — my disability – and turn it back on itself.  Instead of shielding myself like an insecure wallflower, I wanted to stare into the camera and dare the viewer to look at me. Do you think I’m weak because I can’t climb stairs? Then I’ll plant my nearly-naked ass on those stairs and show you who’s not weak. Do you think I’m inferior because I’m “confined to a wheelchair” or “wheelchair-bound?” Then I’ll wrap metal chain around me and show you a thing or two about bondage. Do you think I should cover myself to hide my scars? Then I’ll sit on a bench clad in nothing but jewelry and eyeliner and challenge you to look at me.

The photographer assigned to me was young enough to be my son, but he was also a musician. He had a good grasp of the punk aesthetic. He suggested not shooting in a conventional studio, but rather in a run-down building bathed in late-afternoon shadowy light. I assembled an eclectic wardrobe, including leather motorcycle jacket, animal print dresses, a riding crop and a metal chain. A professional makeup artist brought the punk girl out in me.

The hotel was care-worn and hotter than hell. We started out with shots of me sitting on a dusty staircase, clad in feather boa and fishnets. I’d requested punk, new wave and Goth music, so an assistant used her iPhone to blast some great tunes. I asked myself, “What would Siouxsie Sioux do?” Then I growled, howled and mentally crawled into the camera lens.

We changed up with shots of me in my wheelchair wearing my motorcycle jacket and not much else. I was worried what sweating would do to my makeup, then tossed aside my fretting. The assistants on the shoot kept me hydrated with bottled water and fruit.

The only furniture on the set was an old broken-down piano and shaky bench. My photographer looked at it and said: “This is where we’ll get the money shot. You need to be naked.”

By now, I was fully in the moment and ready for anything. Clad in just jewelry, I imagined myself a jaded, old-money Eurotrash chick in her family’s run-down mansion: strong, fierce and shameless. It felt so right, then a police cruiser pulled up outside. Were we being shut down because anyone could look in through the open windows and see me naked?

Fortunately, the cops were simply stopping a speeding motorist. He was issued a ticket, then both cars pulled away. We all laughed nervously, then finished with as many shots as possible until the light faded.

Weeks later, I attended the opening night gala of the Miami Bold Beauty show, along with two dozen other female models with a variety of disabilities. My photo was the only full nude in the show. I was ebullient and proud.

heidi johnson wright

Acquiring my disability identity has meant traveling down a long, winding road. I’m finally at a point in my life where I accept myself, scars and all. I no longer have a 20-year old’s waistline, yet I feel more confident and secure than I ever imagined possible. With confidence comes inner peace and contentment. With confidence comes strength. With strength comes beauty.

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