Disability: A Fate Worse Than Death?

Step right up, kids. I’ve got something I gotta tell you, and that something it this: drive stupid and you’ll face the worst possible fate you could ever imagine.

What do I mean by “drive stupid?” I mean taking your eyes off the road, especially for stupid reasons. Like to replay that Demi Lovato tune. Or to re-adjust those flesh tunnels in your blown-out earlobes. Or to send a text from your Hushed app to that unwitting recipient who thinks you’re a chick from Barcelona when you’re really a dude from Barstow.

You see, distracted driving can have some mighty brutal results. Like wrapping your dad’s Kia Sorrento around a tree. Think how mad he’s gonna be when it’s totaled ‘cause your leg is now attached to the carburetor. 

 

I know what you’re thinking. You’ve seen the “scare ‘em” movies in Driver’s Ed of real-life crashes. You think I’m trying to frighten you with the specter of death.  Au contraire, amigo mio. I am trying to make you piss your pants at the thought of something much worse than death: being disabled.

Being disabled is way worse than death. At least a corpse is still a full-fledged person. But a wheelchair user? Truth be told, going from “cool to crippled” would drop your value to about six-tenths of a human being. That’s why we’ve placed a non-disabled kid in a vintage wheelchair, told him to hang his head in shame, and put his photo on the above poster.

Being disabled is absolutely the worst thing we could think of. The worst combination of fear and shame imaginable.

Worse than running over a toddler. Worse than doing time for vehicular manslaughter. Worse than being dogged by a felony record. Hell, worse than death itself.

So the next time you text while driving because you figure ending up in a coffin doesn’t sound so bad, remember: you could end up in a wheelchair instead.

Face of Failure, Symbol of Shame

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.

Professionally Crippled

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.