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.

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.

Piano Lessons, Pit Vipers and X-ray Specs

I began learning to play the piano in elementary school at the insistence of my parents. I found it a miserable chore. My sister and I would dutifully take our piano lessons each Saturday morning. I’m not sure whose bright idea it was, but our lessons commenced at 8am, and it was a 20-minute drive to get there. Sleeping in on Saturday mornings became a mere fantasy.

Our teacher was Mrs. S. She lived with her mother in an old, musty-smelling house near the lake. That her mother was still alive was inconceivable, given that Mrs. S herself was older than dirt. She was stoop shouldered and slow moving. Her face bore a distinct resemblance to the faces of the folk art dolls my mom carved from apples and set out to dry in the sun. On days when I was less charitable of spirit, I would describe her visage as, well, simian.

Mrs. S’s voice was thin and reedy and came forth from her throat like a long, silvery thread. If you went to Egypt’s Valley of the Kings and dug up the mummy of Nefertiti, opened her tomb, unwrapped her bandages and chanted an incantation that could make her speak, the voice that came forth just before her head collapsed into a cloud of dust would probably sound like Mrs. S.

Mrs. S never answered the door when we arrived at 8am each Saturday. It was always a man at the door whose identity remains unclear to me to this very day. I would beg my sister to have my lesson at 8:30 so I could make her go first while I sat on a wooden bench with a braided seat cover in the foyer, reading Mrs. S’s trove of comic books. Laura never hesitated to pull older sister rank on me, so I perpetually had the 8am slot.

Mrs. S neither liked nor trusted her students. She did not bother to climb out of her sarcophagus until she actually heard us arrive. I pictured her putting a giant, antique ear horn to her head, letting out a sigh, then getting out of bed. I had to sit on the piano bench for another 15-20 minutes waiting for her, studying precisely where the wallpaper pattern began repeating.

As if that weren’t bad enough, Mrs. S had the disposition of an irritated pit viper. She barely greeted me before shuffling over to her chair beside the piano bench. Once I began playing the pieces she’d given me to work on, the least little thing set her off: the clumsy grace note, the missed key change, piano instead of pianissimo. She was a shriveled, gnarled mummy who could utter only scoldings. Worst of all, she gave letter grades for each lesson, and appeared to savor the withholding of praise and approval. Had my parents purposefully searched far and wide to find a teacher who could turn off a child to playing the piano, they could not have made a better choice. Bravo!

I worried myself sick until the lesson was over and the grade was finally doled out. A bad grade (anything below an A-) would result in a second scolding at home. If I didn’t tell my parents how my lesson went, my sister would be sure to fill them in.

Once Mrs. S allowed me to escape from her lair, I traded places with Laura on the bench in the foyer. Now it was my turn to relax and thumb through the comic books that Mrs. S must have bought at a rummage sale years before. I didn’t read them for the comics themselves. Was there ever a Caspar the Ghost storyline that wasn’t lame? Who could possibly identify with Richie Rich and Scrooge McDuck?

No, I read them for the ads.

I was fascinated with two different types of ads. The first type was the more obvious: ads for practical joke novelties and “spy” gadgets. I never actually sent away for a pack of exploding cigarettes or chewing gum that smells like farts, but I got plenty of joy imagining who I’d torment with them. Even better, I pictured myself in a tableau of Cold War intrigue, secretly photographing my sister’s diary with a mini spy camera or staring through her boyfriend’s clothing with a pair of X-ray specs.

The other type of ad was for posters and accessories that gave me a glimpse into a world utterly despised by my parents. They considered anything that even vaguely promoted drug use or anti-establishment/hippie culture to be Satanic. I was endlessly fascinated by black light and Op Art posters and dreamed of papering my room with them. In elementary school, I wasn’t really into the Doors or Jimi Hendrix. But I was pretty sure I could send my God and country, Paul Harvey-loving dad into orbit if I sewed a patch on my jeans that said: “War is not healthy for children and other living things."

I’d been taking lessons from Mrs. S for about a year when my mom told me that Mrs. S was very ill and in the hospital. She’d apparently had a stroke. (Or a legion of carnivorous scarab beetles had finally eaten through her sarcophagus.) I wouldn’t be going to piano lessons for several weeks. Pity.

About three weeks later, my mom said that Mrs. S had been called home. I figured that either meant heaven or Luxor. Half of me felt joy, and the other half of me – the hard-working, Midwestern, Protestant half – felt guilty that I felt joy. I kept all of my feelings to myself. Nothing could set off my parents faster than even the mere perception that I was being disrespectful to an adult. (Or to the memory of one.) 

Ten-plus years later, my mom, sister and I were taking a stroll down memory lane. Mrs. S’s name came up, and I said that the nasty, old harpy should not have been allowed in the same room with children, let alone giving them piano lessons. As if on cue, my mom leapt to Mrs. S’s defense, citing her Julliard pedigree. As if being formally educated makes one a decent person.

My mom said Mrs. S shouldn’t be judged so harshly, especially given the gruesome circumstances of her death.

“Gruesome? What’s so gruesome about a stroke?” I asked.

This elicited howls of laughter from my sister.

“Oh, my God, after all these years – you never told her?” she asked my mom.

My mom shook her head.

“Heidi, you goofball,” said Laura, “Mrs. S went down to her basement, stood on a chair, stuck her head in a noose, and shot herself! She was really depressed over her mother’s death -- or maybe she just couldn’t take your playing!”