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.

RUBIK’S SHOES, or Feeling as Feminine as Ernest Borgnine

Rubik’s Cube blasted into American pop culture when I was in high school. I still remember the first time I held one. I loved it the way I love Piet Mondrian’s paintings: for its mesmerizing, aesthetically pleasing geometry.

That is, until I tried to solve it. I’ve never had a knack for math and I wouldn’t know an algorithm from Algeciras, Spain. I made several tries in earnest to line up the same color on each side. But when I got close to lining up the white squares on one side, it threw the yellow side out of whack. I failed miserably. It served the remainder of its life as a paper weight. Today, the only “Cube” I love is the 1998 film in which six people are inexplicably imprisoned in a booby-trapped system of boxes.

Which reminds me of my relationship with shoes. (Yes, dear reader. This particular blog entry is much like a Simpson’s episode, starting out with one apparent plotline and veering over to something completely different.) You see, because of my 40+ year battle with rheumatoid arthritis, my feet and ankles are a disaster. Consequently, trying to find a pair of cute shoes that I can walk in is as exasperating as trying to align color facades on a cube.

First off, I take a small shoe size: size 6 American, size 35 or 36 Italian. But my tootsies are really wide. Sometimes I can squeeze into medium width, but “wide” width is preferred. The next problem is my ankles. I had them fused into a fixed position back when Jimmy Carter was still in the White House. This means my feet are like Barbie’s; I must wear shoes with a heel or I will fall over.  In my case, every pair of shoes I own must have a heel height of 2.6 inches: no more, no less. (Sometimes if the heel is only a tiny bit too low, I can cheat with a small wedge inside the shoe to raise me up.) The putrid icing on top of this stinking cake is the fact that I can’t reach my feet with my hands. So I need shoes that I can slip on and off by myself. No ties or buckles.

Shoe shopping is typically an exercise in exasperation. Like the squares on a Rubik’s Cube, everything must align just so. When I find the right size, the heel height is often too high or too low. If I can align both size and heel, the shoes are probably too narrow. When I get lucky and align size, width and heel, my hopes are shot down by shoe strings or buckles. “Cloven toes” are also a deal killer.

Truth be told, I do own a pair of low-heeled cheetah print Manolo Blahnik mules and a sweet pair of Emilio Pucci slides. I save them for special occasions. The remaining pairs are fit only for a bingo hall or a skateboarding half-pipe. No six-inch stilettos; just clodhoppers. About as feminine as Ernest Borgnine in a pair of SAS waitress wedges.

So I pretend. When I’m doing my adapted aquatic exercises, I work a runway walk along the stripes painted on the pool bottom. For a few moments in my mind, I’m a fashion model in a pair of Prada flame heels strutting along the catwalk.