THE DAY I BARED MY DISABILITY

Wearing Nothing but Eyeliner and Pearls

By Heidi Johnson-Wright

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.

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