FACE OF FAILURE,

SYMBOL OF SHAME 

By Heidi Johnson-Wright

Back when I was a kid, it haunted me.

It was always lurking in the back of my mind. It weighed on my shoulders and jangled my nerves.

It was the stick with no carrot that my parents used to motivate me. Its sinister proximity was held over my head, the motivation to do 10 more minutes of exercise. To walk 10 more feet. To try just a little harder.

I feared vampires but I was much more terrified of it. Vampires vanished with the sunrise, but this dastardly beast was always just around the corner. 

It was the face of failure and the symbol of shame. A stain impossible to wash away. Once its lamprey-like jaws latched on, it consumed you. It became you. You were marked for life, and what a pathetic life it would be.

You see, my Nosferatu, my demon, the thing I feared above all others was a wheelchair.

I never consciously admitted it to myself, but I think I knew as a teenager that full-time use of a wheelchair would have made my life a whole lot easier, and undoubtedly richer. The precariousness of my walking and the crushing fatigue it caused meant I could expend energy only for essential movement like walking to class.

In high school, I went to the restroom once a day or not at all. I simply couldn’t afford the pain and extra energy needed to make the trip. Holding it was a better option for me, if not for my kidneys. Activities like writing for the school paper or yearbook were impossible. To participate meant more walking. And that just wasn’t gonna happen.

Back then a chair was acceptable only for those labeled “profoundly disabled,” individuals who’d been discarded by society. Even the elderly shunned wheelchairs. My grandma would rather have worn Hester Prynne’s scarlet letter on her bosom than ride in one.

“I hope you at least have two fingers you can still move to run a wheelchair!” my mom once shouted after a therapy session when she thought I hadn’t tried hard enough. (I didn’t know how to break it to her that a power chair is controlled with a joy stick, not “forwards” and “backwards” buttons.)

With adulthood, my childish fears faded. I shook away the terror of needing a chair, but it took much longer to shake the shame. I still believed I was lucky that the non-disabled allowed me into their stores, restaurants and theaters, even if it meant coming in the back door through the boiler room. I should count my blessings that I was allowed to sit amongst them, even if it was in the back row.

It took decades to see my wheelchair as a device of empowerment rather than a burden of failure. It was no longer an albatross around my neck but a raptor that swept me off to college, enabled me to have a career and a meaningful life. 

If you’re young and disabled, don’t let ablecentric troglodytes define your life and how you should live it. Don’t buy into their bigoted ideals. Reject their pathetic need to make hierarchies and pigeonhole you in them.

If there’s one thing I’ve learned, it’s this: going through life in an upright position is highly overrated.

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