By Heidi Johnson-Wright
Denial and acceptance seem, at first blush, to be polar opposites. Or perhaps two sides of the same coin.
Denial and acceptance seem, at first blush, to be polar opposites. Or perhaps two sides of the same coin.
As a kid, I figured you either completely accepted something, or completely denied it. The light switch was either on or off, with no shades of gray in between. Decades later, I eventually realized the irrationality of such an extreme viewpoint. I began to see that one could indeed accept certain layers of something, yet deny others. Such as a disability.
Since I was about 10 years old, my disability had become visually obvious. I could walk unassisted sometimes – wheelchair on the sidelines – yet there was no denying I was disabled.
Arthritis had irrevocably claimed me. I had the classic look of a 1970s-era juvenile rheumatoid arthritis survivor. Should you meet anyone of my era who had severe JRA, our look is unmistakable.
We have very small chins because of jaw joint damage. Our faces simply didn’t grow fully. We can’t turn our necks so we follow things with our eyes only. Our shoulder width is narrow. We struggle to raise our arms, which are short. Our hands are small. Our fingers are twisted, gnarled.
A JRA survivor’s gait is more of a side-to-side motion, rather than one of forward strides. If our hips were affected – especially if they were replaced – our lower backs are arched and our buttocks stick out. We have knee contractures that keep our legs perpetually bent.
With all of these undeniable physical changes, you’d think my acceptance of my disability would be complete. Yet when when I started using a wheelchair more often for mobility, I would sometimes find myself jumping hoops of rationalizations.
“I can still walk a little bit, so I’m not as disabled as those other chair users,” I thought.
One thing I tried to avoid was looking – as I called it – “professionally crippled.” While I couldn’t actually define the term “professionally crippled,” I knew it when I saw it. Kind of like Supreme Court Justice Potter Stewart’s take on “obscenity.”
The professionally crippled of the world tricked out their wheelchairs with beverage holders and bumper stickers. They didn’t discreetly hide their wheelchair battery chargers or reacher sticks or even urinals. They left things spread out for anyone to see. They cared more about convenience than appearance.
As I began my second half-century on this Earth, I still like to look my best. But now I value convenience and ease and lack of hassle more than ever. Part of it stems from just being older and a bit more depleted of energy. Plus, with age, comes wisdom and the ability to sort out what really matters and what doesn’t.
Time has also eroded away some of my underlying layers of denial. You might even say I’ve moved up from amateur to professional rank. I’ve learned to embrace my disability identity. It’s who I am.
I’ve earned it. I own it. And I refuse to be ashamed.
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