SCREAM ALL THE TIME

By Heidi Johnson-Wright

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. 

http://earthboundtomboy.blogspot.com/2015/09/scream-all-time.html

GIMP GIRLS AND CRIP CHICKS RULE

DISABILITY ADVOCACY FROM EARTHBOUND TOMBOY

By Heidi Johnson-Wright

I came of age in the late 1970s, when the girls in my high school sported ultra-shiny lip gloss and perfectly feathered hair. They wanted to be like Farrah Fawcett or Margaux Hemingway, pop culture “it girls” who danced the night away at Studio 54.

I wanted my share of fun, too. But I couldn’t imagine myself doing the bump or the hustle with a partner on a dance floor. The arthritis had turned my body against itself. Instead of grinding with a hot guy in a club, my joints were grinding bone on bone.

I began using a wheelchair for mobility. And I realized that Charlie had no gimp-girl Angels. Faberge wanted no crip chicks in its fragrance ads. It was painfully evident that no women in popular culture looked anything like me.

The only wheelchair user I saw depicted in popular media was Ironside, the character Raymond Burr portrayed in the TV cop drama. A former detective forced into retirement after a shooting renders him paraplegic, he becomes a special police consultant who solves crimes in a wheelchair.

Loads of action! Snappy dialogue! Wheelchair jokes!

I looked around and saw no positive female role models in wheelchairs. No crip chick characters on TV or in the movies. No gimp girl heroines in books or narrators in music or poetry. Didn’t do a whole lot for my adolescent female self-image.

Decades later, pop culture hasn’t made as much disability-positive progress as I’d like. But things are undoubtedly better. Case in point: my friend, Stephanie Woodward is in a Honey Maid graham cracker commercial.

Honey Maid has launched an ad campaign that features inclusive depictions of American families -- same-sex couples, mixed-race and blended and immigrant families. Stephanie and her niece are featured in a spot showing a disabled aunt and niece making apple and cheddar melts together on their graham crackers.

Stephanie is a disability rights lawyer and activist who is currently director of advocacy at The Center for Disability Rights. She signed on for the project, Honey Maid says, because she—and many in the disabled community—want real disabled people featured on TV and in the media, not actors playing disabled people.

Check out the ad at: https://www.youtube.com/watch?v=d4TncEFoI3Q&feature=player_embedded