ragged edge magazine online



Issue 1




Spokes 'n' Cure

By Ed Hooper

Cartoon by Reese James.
Click for larger image...

"What's this crap I hear, Hoops, that you don't want to be cured?" asked my wise-guy para buddy Spokes Ableman. "Have you lost what's left of that quad mind of yours?"

"You know, Spokes, it's just like you to take a positive analysis of living a happy life from the seat of a wheelchair and turning it into a mental dysfunction. I never said that I would refuse something that might improve my quality of life."

"You're not exactly Christopher Reeve here," Spokes chided. "I mean I understand you not wanting to look like a 200-pound Pinocchio or to something out of a Mary Shelley novel, but you've been quoted as saying you wouldn't take the cure. What's that all about?"

"Spokes, I said that I didn't need to walk again to live a happy life. There's a big difference between that and refusing to do something that would make my life easier," I responded defensively.

"What's walking got to do with any of this, Hoops?" Spokes asked. "This is about having some of those normal physical functions, you know, like bowel, bladder, and how about a little pelvic thrust just to round out the big three? BB and S. Bowel, Bladder and Sex. Give me the BB and S and I'll roll through this world like a man who just won the lotto."

"What, like you don't have sex, Spokes?"

"Yeah, I have sex, great sex, but men were made to thrust. And the last I checked, I'm a man. What about you? Wouldn't you like to have your thrusters activated again? Or how about just taking a long, long leak? Whoa, baby."

"OK, OK! but those are not the driving forces that control my life. I can't and won't obsess over something that I've learned to live with or without."

"Oh, boy, here we go." Spokes began get a little more aggressive. "So, you'll let the Chris Reeves of the world obsess and if they're successful, you'll jump (excuse the expression) on the proverbial bandwagon. Is that it?"

"In the first place I'm not that concerned about Reeve. He still works and has money. He obsesses as time permits. I'm worried about that group of poor disabled people -- the norm -- who spend virtually every waking hour waiting for the good news while the years and their lives tick fruitlessly away. It's amazing how one word keeps them going: 'Soon.' 'It's coming soon.'"

"Hoops, you know that when the breakthrough comes, all of that goes away."

"Wait a second, Spokes. You're saying we can cure our way out of social responsibility?"

"Hey, you didn't answer my question about jumping on board," Spokes persisted.

"Spokes, we can't all put life on hold, hoping some SCI mouse will start twitching his hind legs in a lab somewhere."

"Yeah," Spokes began to worry aloud. "You know the whole prospect of fixing the central nervous system is frightening. Once the mice are running, who'll be the first human? And will there be short-circuits that cause some kind of herky-jerky, Mr. Roboto motion? China shop owners will be rushing to slap 'Closed' signs on their doors when they see 'the cured ones' approaching.

"And what about pain?" Spokes puzzled. "I've been sitting on my butt for 25 years almost as long as that good-for-nothing brother-in-law of mine. My legs and rear end aren't going to win any beauty contests, so what happens when they infuse a jolt of feeling into those atrophied ducklings. Ouch!"†

"So, Spokes, you helped answer your own question. If a proven procedure -- meaning no long-term or excruciating pain or weird results -- were available to help me improve my quality of life, I'd do it. But the bottom line is that I don't need it to be happy.

"And you know, Spokes, there are tons of people like you who succeeded with a disability, not without one. You wouldn't be near the smartass you are as an AB."†

"Well, thanks for those kind words, Hoops, I think. Would Itzhak Perlman fiddle better without polio? Would Stevie Wonder write and perform the same with 20/20 eyeballs? And would we understand black holes if Stephen Hawking could sing and dance the Watusi? Who knows? And I guess who cares, since they've become who they are with their disabilities?†

"Oh, oh, there's that look on your face again, Hoops. You're going to use the P-word aren't you?"

"You mean pride, Spokes?"

"Yep, pride. You always manage to sneak that into the discussion člike pride gives you a right to get on your soapbox and beam like the winner of some 8th-grade spelling bee."

"What, Spokes? You're not proud of the life you forged with your disability?"

"Damn right I am. But humility and a cure prevent me taking my much-deserved bows.

"See ya next time, Hoops."

Ed Hooper plays and coaches quad rugby and serves on the board of his local independent living center.

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