Mark E. Smith

Filed under: Themes, Wheelchairman of the Board, Cerebral Ballsy

…Don’t Need to Stand to Rise

by Mark E. Smith AKA “The Wheelchair Junkie”

I recently read a news article that pondered how horrible it must be to go through life using a wheelchair. “Imagine spending your life in a wheelchair, always having to look up to talk to people, restricted in your movements and your activities,” the article began, going on with, “There’s just so many things that people aren’t able to do if they can’t stand up. If you picture yourself only sitting, all your life, try to think of all the things you wouldn’t be able to do because of that.”

I’ve never understood the overemphasis that some place on the mere act of standing. I mean, in my professional role, I understand the importance of some wheelchair users standing for the physical and functional benefits, and I can appreciate the emotional and mental benefits some may derive, as well. However, for me, personally, the psychosocial aspects of standing – how the act of standing could somehow improve my own life – have escaped me.

Now, from my introduction, you may suppose that I don’t understand the esteem of standing because I’ve never stood. But, I have stood – far too much, if you ask me. While growing up, I was wrestled into various standing frames, directed by my therapists and mother to stand for an hour per day, bribed with cookies and cartoons from a very young age. What they didn’t know was that I was a cheater from the start, able to curve my body like Houdini, wedging my rear against the back boards of the standing frames, taking almost all of the weight off of my spastic legs.

As I got older, they did away with the traditional standing frames, upgrading me to a tilt table – a Frankenstein-looking gurney to which they strapped me, then cranked me to a standing position. To my good fortune, I could reach the crank handle, so as soon as my mother strapped me in, stood me up, and left my bedroom, instructing me to call her when I was done standing, I cranked myself back down to the horizontal, and took a nap, cranking it back up when I awoke, without Mom ever knowing. After a day at school, the naps served me better than standing, anyway.

This intellectual battle with those demanding that I stood stemmed from my fundamental understanding that nothing about me changed from sitting to standing. Unfolding me from a seated position to the vertical didn’t make me smarter, wiser, funnier, or more charming. I wasn’t a better person standing than sitting, my grades didn’t improve, my brother could still beat me up, and my high-school girlfriend still wouldn’t go past first base. I remained myself, no matter sitting or standing, so why not be in my most natural state, sitting in my wheelchair?

When I was sixteen or so, I chose to stop standing each evening. Instead, I studied more, worked out my upper body, and charmed a new girlfriend. My grades improved, I could squeeze my brother in a headlock, and I went to second base with my new girlfriend – all from a wheelchair.

Life without standing has been good. My graduations were no less important by rolling across the stages, sitting to accept diplomas rather than standing. Rolling down the marriage aisle, and sitting to say my vow was no less monumental than standing. Greeting my daughter after her first day of kindergarten as she ran out of school and jumped into my lap was no less important than her jumping into my arms with me standing. And, giving a business presentation is no less commanding from my wheelchair than on two legs.

After all, life is about who we are in our truest forms – our humanity shines over mere posturing. In this way, none of us need to stand to rise.

When Mark E. Smith was born with severe cerebral palsy, the doctors said that he was an absolute vegetable, void of cognitive skills. On top of disability, Mark’s family was fragmented by alcoholism, divorce, incarceration, and suicide.  But Mark defied all odds, becoming among the first disabled students successfully mainstreamed into California’s public school system, achieving unthinkable levels of physical independence, emotional strength, and personal success. Mark went on to attend San Francisco State University’s prestigious creative writing program, and has become a widely-published author, a Mobility Projects Manager for Pride Mobility Products, and the infamous Editor of www.WheelchairJunkie.com. He lives in Pennsylvania with his wife and daughter, where he enjoys gardening, singing karaoke, and playing the odds at the Pocono Downs horse track, where, fittingly, he usually bets the long shot.

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Filed under: Themes, Wheelchairman of the Board, Cerebral Ballsy

Stunt Cripple

by Mark E. Smith AKA “The Wheelchair Junkie”

If FHM Magazine called upon most guys for an interview, they’d jump at the chance. But, not me. Sure FHM is among the hottest international men’s magazines, up there with Maxim and Esquire, featuring the trendiest personalities. However, I’ve played the media game, learning that such mainstream interviews do not turn out well when you have a disability – you will be reduced to a one-dimensional stereotype of disability, either an overcoming-all figure or one evoking patronization. For this reason, I’ve politely passed on countless interviews over the years – and, I believe that my career and life have been more genuine because of it.

Yet, FHM’s interest struck me as different. It wasn’t Reader’s Digest or Dateline NBC looking for a feel-good story about two disabled parents raising a child, or a profile of a guy with cerebral palsy who overcomes all – cliché portraits of disability that the media manipulates. No, FHM was something else – FHM is cover-to-cover sex, cool, and rock ‘n roll. In fact, the issue that my interview would appear in was also to feature a Paris Hilton spread, interviews with actor Mickey Rourke and rocker Dave Grohl, and a bunch of hot, half-naked models posing on the pages in-between.

“How could I say no to FHM,” I said to Lee Coan, FHM’s International Editor. “Send me the questions, and we’ll go from there.”

Coan sent me the questions, noting how, if I proceeded with the interview, it would be great for me and my recent book. And, in fact, the questions were good, asking not only about my book, but venturing into topics about my thoughts of the portrayal of disability in the media, and what I thought of the other Mark E. Smith, the British singer? I was impressed – Coan presented questions that were a mixture of fun, hip, and thought-provoking, a departure from my previous media exposure.

As I studied the questions for a few nights, running through answers in my head, I had second thoughts. Again, I’ve never been accurately quoted or portrayed in the media, and even when the profiles of me were flattering, they had media-induced exaggeration and misrepresentations that didn’t reflect me as anything other than a caricature of disability. Was there any way FHM could box me in, as well?

“You’d better be careful of FHM,” one of my buddies advised, a bit media savvy, himself.  ”They can mess with people.”

“Coan seems straight, and the questions are good,” I replied. ”If I stick to my answers, it could be alright. After all, it’s FHM – that’s huge.”

Finally, I did the interview, adhering to formed, methodical, written answers. I was confident that my intellect and humor came through, too, giving Coan all the more reason to not merely publish the piece, but to publish the interview as-is.

Several days later, Coan dropped me a note, thanking me for the interview, noting that it was “spot on,” that he hoped FHM readers would turn on to my book. A few weeks after that, an editorial assistant requested international permission from me to publish the piece not only in the flagship U.K. edition, but world-wide – I was hitting the big time, and I began to think that my moratorium on mainstream media interviews may have been an overreaction, as all aspects of my FHM experience were upbeat and on the straight.

I got so busy with my fall schedule at work that I forgot all about the interview for a few weeks, until a nine-by-twelve envelope showed up in my home mailbox one Saturday, with FHM as the return address. I raced into our kitchen, tore open the envelope, and flipped through the magazine. “It’s my FHM interview,” I said to my wife, who came to look over my shoulder.

There it was, on page 34, blazed with photos of me, the title in bold, red font:  ”Stunt Cripple.”

“They did it to me again!” I exclaimed. ”I do their interview, and they go behind my back, and title it, ‘Stunt Cripple’ – do you believe this?”

I looked at my wife, who couldn’t hide her instinct to laugh, and then I began reading the article aloud, “Meet Mark E. Smith. Not the bawling Manc loon from The Fall, but the extreme special needer from California.”

The article had virtually nothing to do with the interview that I gave Coan; rather, it was an over-the-top caricature of me as a “special needer” who gets his kicks driving his wheelchair on “mud banks.”  The state I live in was incorrect, the few words from the interview that were actually mine were entirely out of context, the setting of the interview was fictitious, and there was nothing about my book, my career, or my views on disability culture.

“I’m so sorry,” my wife said, laughing so hard that she could barely get the words out.

“I guess I had this coming,” I said, understanding that I should have never trusted the media, that it was my own fault that I let my ego talk me into doing the interview in the first place. “Well, it is the first entirely tabloid story about me – but, even that’s a disappointment, because it should have been titled, “Stunt Cripple Births Alien.”

“Hey, I heard that,” my daughter said from our family room that joins our kitchen. “That would mean I’m an alien.”

“That might be an accurate story, then,” my wife said, and we all laughed.

When Mark E. Smith was born with severe cerebral palsy, the doctors said that he was an absolute vegetable, void of cognitive skills. On top of disability, Mark’s family was fragmented by alcoholism, divorce, incarceration, and suicide.  But Mark defied all odds, becoming among the first disabled students successfully mainstreamed into California’s public school system, achieving unthinkable levels of physical independence, emotional strength, and personal success. Mark went on to attend San Francisco State University’s prestigious creative writing program, and has become a widely-published author, a Mobility Projects Manager for Pride Mobility Products, and the infamous Editor of www.WheelchairJunkie.com. He lives in Pennsylvania with his wife and daughter, where he enjoys gardening, singing karaoke, and playing the odds at the Pocono Downs horse track, where, fittingly, he usually bets the long shot.

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Filed under: Themes, Wheelchairman of the Board, Cerebral Ballsy

Las Vegas Friends

by Mark E. Smith AKA “The Wheelchair Junkie”

I’m 715 feet in the air, looking over the side of my powerchair, with an unobstructed view from my rear tire to the teeny-tiny swimming pool and dots of lounge chairs that are fifty-five stories below me. I’m at the Ghost Bar, atop the Palms casino in Las Vegas, parked on a glass block, the size of a kitchen table, imbedded in a balcony floor, providing a crystal-clear view from the top of the Palms to the ground below — a view that one might only briefly retain if they were plummeting toward Earth. Few at this mobility industry gathering thought that I’d have the guts to drive onto the glass; but, I had two bits of information that I reckoned would prevent me and my powerchair from meeting our maker on the concrete pool deck below: Firstly, I once saw three drunken celebrities jumping up and down on this very glass block on a television show; and, secondly, no business would ever have such an attention-grabber unless it was foolproof.

It seemed logical that it would hold my weight.

Despite my confidence, anything is possible, and what if something went horribly wrong during the engineering and installation of the glass block, and the weight of me and my powerchair was the so-called straw to break the camel’s back, sending me into a catastrophic freefall over Las Vegas? Fortunately, in either case, I couldn’t lose — if I lived, I would be respected for having the guts to roll onto the glass, or if something went wrong, I would have among the coolest death stories in the history of mankind, having fallen fifty-five stories in a powerchair.  With such a win-win situation, I had to take the dare, and roll out onto the glass block.

So, here I am, parked on a glass block, 715 feet above Earth, surrounded by a crowd that’s seemingly impressed by this non-impressive feat. Indeed, I’m not falling to my death, which may be just the sign I need that my luck at the blackjack tables is about to change for the better.

“Come on, Dave,” I say to my colleague, “let’s go down to the casino, and play some cards.”

I’ve just won forty bucks in half an hour playing black jack, so now I’m saving my winnings, drinking a casino-courtesy Coke, and watching Dave drop quarters into a slot machine. An attractive, twenty-something woman just sat on the slot machine stool next to me.

“How’re you guys tonight?” she asks.

“Fine, winning here and there. How are you?” I ask, making idle conversation.

“Good,” she says. “So what are you guys doing tonight?”

“Hanging out,” I say, watching Dave fight to get his quarter back from the now-jammed slot machine. “What are you doing tonight?”

“Just looking to make new friends,” she says, winking at me.

Now, I’m not the most naive guy you’ll ever meet, but this has never happened to me. I just realized that I’m being solicited by a prostitute, and now I’m clueless how to handle this situation that I’ve innocently talked my way into.

“We’re both happily-married men,” I say, holding up my left hand, showing my wedding ring like garlic to a vampire.

“So you’re not into this?” she politely says.

“Actually, I’m more inclined than he is,” I say, pointing at Dave, who just pushed the button to call for an attendant to get his quarter back.

Did I really just say that? Did I really just say that I’m more inclined than Dave toward prostitution? If there’s ever been a statement that’s come out entirely wrong, it’s the one I just said.

Dave looks at the woman, and asks, “What did he just say?”

“He said that he’s into it, but you’re not,” she says with a smile, as if entrapping me with my entangled, misinterpreted words.

Dave looks at me like I’ve lost my mind.

“No, that’s not what I meant,” I say, somewhat panicked that now I’ve inadvertently solicited the woman in return. “What I meant was, Dave’s very religious, and while I’m not personally into your thing, I’m not against it. Well, I am against it, but not against it, if you know what I mean.”

She’s looking at me like I’m speaking Japanese to an Englishman, and I might as well be — this whole solicitation dialog is way out of my range of experience, and I don’t know what I’m saying. Where’s that damn casino attendant?

“Look, we’re not into it,” I say, figuring I have to put an end to this conversation.

“We’re both happily married, and not into any of this.”

Finally, the casino attendant arrives, using her key to open the machine to get Dave’s quarter.

“OK,” the soliciting woman says, standing up. “Good luck, guys.”

With the prostitute gone, and Dave’s quarter returned, Dave and I decide that we should head back to the party, and walk toward the elevator.

“Did I just sound like a complete idiot?” I ask.

“Considering that that was your first solicitation by a hooker, I thought you were pretty cool,” Dave says.

“I guess so,” I say. “And, at least we’ve learned that prostitutes don’t discriminate based on disability.”

When Mark E. Smith was born with severe cerebral palsy, the doctors said that he was an absolute vegetable, void of cognitive skills. On top of disability, Mark’s family was fragmented by alcoholism, divorce, incarceration, and suicide.  But Mark defied all odds, becoming among the first disabled students successfully mainstreamed into California’s public school system, achieving unthinkable levels of physical independence, emotional strength, and personal success. Mark went on to attend San Francisco State University’s prestigious creative writing program, and has become a widely-published author, a Mobility Projects Manager for Pride Mobility Products, and the infamous Editor of www.WheelchairJunkie.com. He lives in Pennsylvania with his wife and daughter, where he enjoys gardening, singing karaoke, and playing the odds at the Pocono Downs horse track, where, fittingly, he usually bets the long shot.

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