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.
