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.

ROCK ‘N’ ROLL GIMP GIRL

“She started dancin' to that fine-fine-fine-fine music

Ooohhh, her life was saved by rock 'n' roll

Hey baby, rock 'n' roll”

 

-- Lou Reed: “Rock ’n’ Roll”

 

The first real rock concert I ever attended was Donna Summer. It was the summer of 1979, and she was touring in support of her Bad Girls album. The title track and the single, Hot Stuff, were in heavy rotation on top-40 FM radio.

Why did I choose the Disco Queen to be my first? It wasn’t because I was a die-hard Donna fan, although I did enjoy her music. It was more about female bonding.

I’d finally made it through a brutal six-month recuperation from bilateral ankle fusion surgery that included three trips to the O.R., a month in the hospital, and two months’ of missed classes during my freshman year of high school.

It was also the first time I’d ever attended school in a wheelchair. The first few days I drew lots of stares. Then I became invisible as most of my classmates looked right through me.

But not all of them. I was blessed to have a tight-knit group of loyal friends who didn’t care that my butt was planted in a 25-pound metal, vinyl and rubber contraption. Girls who weren’t bothered that I was making my way in the world in a seated position. Cool chicks who pushed me around school, joked and laughed and made me feel accepted.

My parents bought tickets for me and my crew, and drove the two carloads of us to Blossom Music Center in Cuyahoga Falls, OH to sit on the lawn and sing "toot-toot, hey -- beep-beep" at the top of our lungs.

Hey, at least it wasn’t Shaun Cassidy.

Since that time, I’ve attended a lot of shows in my chair: Elton John, Lou Reed, Iggy Pop, David Bowie, Bryan Ferry, Leonard Cohen, Robert Palmer, Eurythmics, Crowded House, Ween, Cracker, Mark Eitzel, Joan Jett – the list goes on.

(Of course, there are some I’d rather not cop to. Lionel Ritchie, Asia and the Spin Doctors come to mind.)

Sometimes attending a show in a wheelchair is more than a little risky. I recently saw the Gypsy punk band, Gogol Bordello -- at the Culture Room in Ft. Lauderdale -- while sitting in the pit right in front of the stage. Lead singer Eugene Hutz leaned forward and rained sweat down on me several times. That part was epic.

The risky part was being wedged in a mob that was pogoing, shoving and passing crowd surfers overhead. My wonderful husband anchored himself next to me, his body serving as a buffer between me and everyone else.

Other times, showing up in a chair is a major advantage. In October 1993, my husband and I saw Nirvana at Hara Arena in Dayton, OH. It was during hockey season, and most of the crowd had to stand on the plywood covering the arena’s ice floor. But some visionary had built a large raised, ramped platform six foot above the floor. That’s where we gimps and our companions sat, our sight lines gloriously unobstructed as we rocked out to Heart-Shaped Box, Lithium and Smells Like Teen Spirit.

Perhaps my greatest wheelchair triumph story was showing up to see the Replacements in February 1991 at the Newport Music Hall in Columbus, OH. I’d won admission to the show by calling in to a local alt-rock radio station. But when the door guy checked the guest list, my name was inexplicably missing. I looked up at him with the saddest hangdog gimp expression I could muster. My husband and I got the wave to go on in. Nobody got bent out of shape at that swingin’ party.