Disabilities, Bad Attitudes and Mental Flights of Fancy

I try to live my life by a few simple maxims:

“Strive for balance in all things.”

“Never eat more than you can lift.”

“The only disability in life is a bad attitude.”

It took me years to see the wisdom in that last one. I mean, severe pain and joint damage of rheumatoid arthritis – my particular challenge – are pretty darn dramatic. Having shoulders, hips and knees severed from me and new ones bolted in have proven to be a bit of a distraction.

But I think I’ve finally seen the light and rehabilitated my attitude.

Now when I go to a new restaurant and all of the tables are high with bar stools, I focus on my attitude. Even though I spend the meal staring into my companions’ knees, I mentally try to levitate. That doesn’t actually allow me to socialize with my friends or even hear much of the conversation, but it cleans out all of the “badness” in my mind.

My rehabilitation also comes in handy when I’m traveling and need to catch a taxi. Whether I attempt a street hail or try to schedule a ride by phone, getting a wheelchair-accessible taxi is next to impossible. But that’s OK. Although my trip then requires numerous buses and is four times longer than a cab ride, I’m zipping along through traffic – only in my mind, of course.

If I stay in a hotel or at a relative’s home and there’s no wheelchair-accessible roll-in shower, no problem. As I take my sponge bath at the sink, I imagine myself under a luxurious rain-style shower head. Ah, the lovely flowing water…

You see, I’ve come to realize that being marginalized from society happens not because humankind continues to build restaurants, malls, theaters, offices, transportation and housing with physical barriers. Oh, no. The problem lies within the mind of each and every person with a disability. Fix the attitude and you’ve fixed the problem.

Excuse me -- must run. I need to adjust my attitude up a flight of stairs now. 

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.

SCREAM ALL THE TIME

Once upon a time, I sincerely answered the stupid questions of others with nary a whiff of sarcasm. Yes, I find it hard to believe myself. But I can recall some of those moments from my youth when I thought it was my duty to educate others about my disability. Or even about disability in general. I figured that -- as a gimp girl -- I must be a positive gimp role model for the rest of society. Why, hadn’t the non-gimps allowed me to use their marginally-accessible restrooms and attend their marginally-accessible schools and struggle to find marginally-accessible housing? I had a debt to repay!

I recall a particular episode when I was a college freshman. My university offered free physical therapy for students with disabilities. It was after a PT session that I found myself at the student health center waiting for a van pick-up back to my dorm. And who should join me but Crazy Debbie.

Now, I didn’t know at the time that her name was Crazy Debbie. I learned that later after I described her to someone who knew her. All I knew was that she was a soft-core -- minimal Mohawk ‘do with no face piercings -- punk chick who introduced herself as “Deb.” (For those younger readers who are incredulous about the absence of piercings, keep in mind this was spring 1983. Back then, we thought Michael Jackson’s one glove was rad.)

Crazy Debbie started up a conversation with small talk, followed by a question I’d been asked a million times before: “What’s wrong with you?” Ask me that question today and you’re likely to end up prying my European-size 35 hand-made in Italy out of your butt crack. But back then, I responded with a gentle smile, followed by my fact-laden canned speech about rheumatoid arthritis:

“Auto-immune disease…no known causes or cures…new diagnosis in the U.S. every 30 seconds…blah, blah, blah.”

But before I got too far into my spiel, Crazy Debbie blurted out: “Isn’t that the disease where you just scream all the time?”

It’s possible that was simply a sincere question from a crazy person. I’m pretty sure, however, it was the punch line from a punker who thought she was getting over on a naïve little girl from the ‘burbs. I responded with a polite, serious answer about how the pain sometimes made me scream. But even dopey little 18-year-old me knew I’d been had. I was glad when my van ride showed up shortly thereafter.

I have no idea what Crazy Debbie is up to these days. Perhaps she’s a bobo CEO of a Fortune 500 company. Or maybe she’s now a grandma living in a double-wide in a backwoods holler somewhere.

Crazy Debbie, if you’re reading this, just remember: you never know when I’ll be wearing my Manolos.