Category: Living The Lifestyle

We know that kids are classic when it to asking questions about disability. Yet, when it comes to wheelchair use, I’ve observed that children are less inquisitive and less concerned these days toward those who use wheelchairs than they used to be – namely, I suppose, because if you watch the Disney Channel, Nickelodeon, or Sesame Street, or read grade-school text books, children with disabilities are prevalent as a trend toward overall diversity representation.

Nevertheless, the other evening, I came across one of the few kids in America who’s apparently never seen a wheelchair – ironically, just a few blocks from the company that I work for manufacturing wheelchairs, a fixture in our town.

“What’s that?” the chubby 10-year-old, or so, boy with round, wire-rim glasses asked, pointing at my wheelchair as we both waited at the corner to cross the street.

“A wheelchair,” I said, looking at the red lit don’t-cross sign.

“What’s it for?” he asked.

“I can’t walk, so I use this,” I said, looking him in the eyes, smiling.

“Why can’t you walk?” he asked, motionless, simply staring back at me in the eyes.

“My legs don’t work right,” I said, giving a simple, quick answer, waiting for the light to change, knowing not to get into a complex discussion with the Twenty-Question Kid about cerebral palsy.

“Are they made out of rubber?” he asked, arms at his side, his eyes still locked on mine.

“What?” I asked, unsure if I had heard him correctly, unsure we were still on the same subject.

“Your legs,” he said, “are they made out of rubber?”

I’ve heard a lot of crazy sentiments come out of the mouths of children, but none have ever asked if my legs are made from rubber. I’m a fairly quick wit, but his question was so unexpected and imaginative, I was speechless, impressed by his originality. This crazy kid was raising the bar on our street-corner conversation, to where he had me stumped. I smirked, looked at the light to see if it was still red, then I composed myself, forming my comeback.

“Not rubber,” I said. “They’re made out of polyvinyl chloride.”

“Oh,” he said, still staring me in the eyes. “What’s that?”

“PVC plumbing pipe,” I replied.

“Oh,” he said.

I looked at the light, noting it was now green.

“Time to cross,” I said, rolling into the crosswalk, looking over my shoulder, seeing him just standing there on the corner, motionless, watching me leave.

If anyone would end up having a profound conversation about disability in a strip club, it would be me.

This all started with a conspiracy the other day. See, if my friends and I told our wives that we were having a guys’ night out at the strip club, it would never fly – we’d be lectured, then resigned to staying home to watch the Lifetime network with our wives. However, if we said that we were invited to a “bachelor party,” we were free to go – after all, who wants to be known as the only wife out of the bunch who wouldn’t let her husband go to the bachelor party?

And, our pact to blatantly lie to our wives worked perfectly.

So, there we were at the strip club, and it was everything you could imagine – gold poles, multicolored lights, drifting smoke, and 4-inch heals everywhere. And, as is the case at strip clubs, there was a steady stream of women offering lap dances to us, at least one every two minutes, trying to drain our dollars in real time.

“Dude, check that out,” my buddy said, pointing to an extremely tall, slender, brunette woman in a skin-tight, silver-sequined halter top and matching hot paints.

I watched her for a moment, two tables or so from us in the foggy, seemingly dizzying club. She had a card in her hand that she showed the customer at the table, then tucked the card in her top, picked up a pen and pad off the table, and wrote on it, showing it to the gentleman. I looked to her lips to see what she was saying, but she wasn’t saying a word, just pointing at the note pad, as if wanting the guy to read it.

“She’s a deaf-mute,” my buddy said, looking at me, then back to her.

I watched her gesturing to the guy with her pad again, having written down something else she wanted him to read. “I think you’re right,” I replied.

“That’s weird,” my buddy said.

“This whole scene is weird,” I said. “A deaf-mute stripper isn’t any weirder than a stripper, in general.”

My buddy looked at me, raising an eyebrow.

“Really, if you think about it, there’s equality to it,” I added. “Why shouldn’t a deaf-mute woman strip?”

“I don’t know?” he replied. “It’s just weird.”

“Look at it this way, she’s putting herself out there with a disability well beyond what most would do,” I said. “I know it sounds crazy, but there’s some courage in that. Hustling guys for lap dances takes some gumption, so imagine doing it when you’re deaf and can’t speak.”

“Then, think what she could do if she put that fortitude toward other things in life,” he said.

“But, that goes for every dancer in here,” I said. “That’s where there’s equality in a warped kind of way – there’s no reason why one with a disability shouldn’t pursue any path, functional or dysfunctional.”

“So, is stripping going to be your new career path?” my buddy asked, smiling, picking up his beer.

“My wife begs me to put my pants back on, let alone a club full of strange men paying me to take them off,” I said, reaching in my pocket for more money for the next lap dance. “When you’re smokin’ hot like her with a disability, you make money. When you’re a weathered yahoo like me with a disability, you lose money.”

“That’s how strip clubs work,” my buddy replied, slapping me on the back. “And, aren’t they great!”

Consumer survey companies hate me – they just don’t know it.

I just received another consumer survey to fill out. I receive quite a few these days, having bought a new van within the last year, which immediately put me on ten different automobile surveys, with a computer purchase, catalog ordering, and a subscription to Consumer Reports all adding another dozen surveys to my mailbox.

But, as a guy with a disability, I know that I completely skew the ultimate accuracy of their target marketing toward me, where my on-paper demographic doesn’t account for my true wants and needs. To the survey data collectors, I’m a 36-year-old married home owner, with one child, white-collar income, with interests in “outdoor recreation” and “family activities” – characteristics that, based on the junk mail I receive, paint me as the type of guy captivated by SUVs, lawn tractors, and treadmills. I even receive a bi-weekly flier from the high-end outdoor retailer, REI, listing specials on bicycles and kayaks.

The fact is, as a result of my having cerebral palsy and using a wheelchair, the consumer survey demographic generated about me goes out the window, where unless they show me a powerchair on a lawn tractor or tread mill, they’re wasting their advertising dollars.

Nevertheless, I confess that when filling out the surveys, I purposely check the box that states that I have an interest in “fitness,” which explains the REI bicycle and kayak fliers – and, more importantly, the Victoria’s Secret bikini catalogs that I happily receive in the mail, too.

When it gets to be after midnight like tonight, and my wife complains that I’m working too late again, I tell her, “Baby, I was born into this – you signed on for the ride, knowing what you were getting yourself into. If my habits haven’t changed over the last fifteen years, they’re not going to now.”

Technically, I am busier than ever these days – admittedly working later every night of the week – but it doesn’t seem any different to me, where I’ve always worked on something late into the night, starting in college, then keeping it going with writing over the years. I guess I forever see myself as the kid in the mail room, who reckons that working harder and later inevitably pays off.

And, it has. Presently, my career has three aspects – my role in the corporate world as a wheelchair product manager; my role in customer service via my consumer-based web site, WheelchairJunkie.com; and, my role as a writer. The fortunate aspect is that all three roles overlap, with all aspects inspiring each other, a balance of sorts that keeps everything fresh and energized. But, the downside is time, where at least a 9-hour day in my literal office is a given, followed by hours at home addressing customer service that never ends, with emails and message board posts that truly never stop, all needing infinite time. Then, there’s the writing, which is creatively easy to come by, but takes time – several hours per night to do it right.

So, with so much going on – not to mention, my daughter, house, and all of the duties that go with everyday living – it’s tough to pack it all into an 18-hour day. But, I do – that is, with an extremely regimented schedule.

Between 7:00am and 10:00pm, it’s go, go, go – as non-stop as possible, a whirlwind of wheelchairs, emails, phone calls, meetings, and more emails, with dinner and family time tucked in during the evening. But, once it hits around 10:00pm, rather than winding down, I’m usually winding up – it’s time to start writing.

By 11:00pm, I’m in my groove, the midst of my “writer’s grift,” as I call it. By midnight, I’m all wound up, on a writer’s roll, with music blaring, words like these flowing onto the page with relative ease. And, this is when my wife shows up on queue. “I don’t have a problem with you staying up so late writing,” my wife says, wearing a Victoria’s Secret nightgown, hair in her face from just getting up from bed. “But, do you have to blare bad music?”

“That’s not bad music – that’s Black Flag,” I say, turning up the volume, banging my head in the air with the 80s’ punk rock version of “Louie Louie.”

She leans down, pulls a plug out of the wall, silencing the music in an instant. “Take up something quiet to do while you’re writing late at night – like chain smoking,” she says, walking back to bed.

“But, it’s ‘Louie Louie’…,” I say, struggling to pick up the plug off of the floor, eager to get back on my writer’s grift.

I must have said it five times throughout the day at work today: “Just sign and date my name on it, please.” The other five times – meeting attendance sheets, management sign-offs, an expense report – needed no instruction, as those around me know not to be shy about using their steady hands to sign for my not-so-steady hand.

My disagreement with my own John Hancock goes way back. As a preschooler with cerebral palsy, it was evident that penmanship wasn’t going to be my best subject as I went through school. Heck, at the age of five, I couldn’t stay within the lines of a coloring book, let alone write “Mark” on those brown, lined sheets of dusty-smelling paper that students have used for over a century to practice writing their name over and over again – one life-size name per page was the closest I came.

But, as I grew up, I kept at it, and somewhere around the age of twenty, I had at least enough coordination to sign a check or a greeting card – though never both on the same day, as neither my body nor I had such patience, nor did I wish to include checks with greeting cards.

Before buying my first car and house, I bought an inked stamp of my signature. Actually, it wasn’t even my signature, but it did stamp, “Mark E. Smith.” I reckoned that if a stamp was entirely consistent in stamping whatever was printed on it, then I might as well put the best darn penmanship I could find on it – which was my mom’s.

As it turned out, if a pen required more dexterity than I had, so did that darn ink stamp. My trying to stamp it on the right line of a check or document was like playing pin the tale on the donkey – I had khaki pants for years with my name stamped on the knee from the signing of buying my first house.

Once I became an author, people wished signed books – and I did well with that. Books have a large, blank page in the front, void of structured lines, proving an ideal target for me to hit with a Sharpie. Of course, there was always that one woman in line at book signings, asking for an inscription to “Alexandria Protrocktov,” to which I’d explain that I wasn’t skilled with my “A”s or “O”s, or any other letter, really.

Nowadays, while I have to sign more items than ever, I almost never do. Sure, my signature appears on dozens of documents each week with my approval, but you’d be hard pressed to find my actual signature. My wife signs my name on most of our personal documents; whomever I’m with – family, friends, my English Bulldog – signs for Visa check card purchases; and, at work my employees and coworkers sign my name followed by their initials all day long.

The fact is, I can’t physically write, for all intents and purposes, but everyone else can – and how convenient that is for me.

Of course, some day I’ll find myself in court, starring at Exhibit A, with the plaintiff’s attorney asking, “Mr. Smith, is this your signature?”

And, I’ll be able to look him in the eyes, with sincerity, and reply, “Can you please clarify what you mean by my signature.”

I’m at the Corning Museum of Glass in New York with my family – my daughter, sister, brother-in-law, and nephew. I’m not a big museum fan – not enough excitement for me – but I try to expose my daughter to as much culture as possible, including art, and glass is an approachable medium for a 10-year-old, I suppose.

If you don’t recognize the name, Corning, you have likely used the company’s products. Corning touts itself as the world’s leader in specialty glass and ceramics, producing cutting-edge optics used in the aerospace and semiconductor industries. But, you probably know Corning for its casserole dishes that your mother used, a kitchen must-have for decades. Heck, my mother rarely baked, and even she had set of Corning Wear.

So, it turns out that Corning has been located in the quant, up-state New York town of Corning since 1868, and as a result, the town is built around the company, including the company-sponsored Museum of Glass. And, this is where we are this Saturday, following the self-guided tour through a four-story building that’s remarkably modern, with mood-lit paths, lined with floor-to-ceiling display cases of two-thousand-year-old glass artifacts that sparkling like flowing streams from a distance, drawing you on a winding route through the museum.

Even though it’s a Saturday, at the beginning of summer, there’s almost no one here – just us as we follow the twists and turns of the display halls. And, I’m all wound up. I’ve been working nonstop lately, and was planning on working straight through this weekend on three articles due next week, but my daughter and sister talked me into this day trip – so, I’m feeling like I’m off the hook, paroled for a day, horsing around in a glass museum.

Now, I admit that horsing around in a glass museum is surely a poor idea – undoubtedly as bad as it sounds. But, I’m a mature father, and a wheelchair professional, so the fact that my power wheelchair is turned up to its highest speed, set to 100% acceleration, and I’m making my family both chuckle and chastise me by my zipping ahead and cranking crazy-fast turns in the glass-lined aisles isn’t nearly as obnoxious or dangerous as it might seem. I’m a pro, and I certainly wouldn’t risk smashing up Corning’s truly priceless collection of glass.

But, now I’m driving backward, in front of my family, keeping pace with them, all without looking over my shoulder to see exactly where I’m going. However, as a pro, I know that I’m in the center of the aisle, which winds through the building, so as long as I stay centered between the displays via my peripheral vision, I can drive backward all day without looking.

“You’re such a dork,” my sister says, smiling, pushing her son’s stroller.

“I bet you can’t walk backward with your stroller like this,” I tease, increasing my speed.

“Har, har, har – Dork,” my sister says, laughing.

“See, I’m such a pro, I don’t even need a powerchair that drives forward,” I say, cruising along in reverse, without a hitch.

“There’s a pole behind you,” my brother-in-law says, walking beside my sister.

“Then maybe I should speed up,” I say, giving a sarcastic smile, knowing that my brother-in-law is being a wise guy, trying to trick me into turning around to look.

BANG! – my chair comes to a slamming halt, like a train just rear-ended me, knocking me completely out of position.

“…Told ya there was a pole,” my brother-in-law says, walking past me without a care.

“I thought you were joking!” I say, straightening myself in my seat, pulling away from the pole, driving in the right direction.

“Let that be a lesson to you,” I tell my daughter.

“Never play in a museum?” my daughter asks, walking beside me.

“No,” I say. “Never back a powerchair into a poll – it hurts.”

In the design and manufacturing of wheelchairs, there is the terminology, “intended use,” meaning the typical ways in which a wheelchair is commonly used and operated. One word, however, that’s not on any intended use outline that I’ve ever seen is, “frolicking” – but, based on what unabashed consumers have shared with me over the years, maybe it should be.

Now, I should clarify that when I use the term “frolicking,” it’s a euphemism for… well… frolicking, if you catch my drift. With this in mind, why both men and women have felt comfortable discussing such a delicate topic with me remains a tad of a mystery? Maybe it’s because folks know I’m a wheelchair user, or maybe it’s because folks feel comfortable with me from reading my writing over the years, knowing me as a friend. But, for whatever reason, folks have no qualms toward asking me whether they can “frolic” in their new wheelchairs.

Interestingly, the approaches people take toward the subject vary from gingerly to blunt. Most ease into the question, inquiring if the seat fully reclines, that the arms completely remove, then ask about the weight capacity, wondering if the wheelchair can support two people? Other consumers skip the chase, simply asking, “Can we do it in my chair, or will the chair break?”

My professional answer is always the same: “I must recommend against exceeding the weight capacity of your wheelchair.”

However, my real answer is, I have no idea whether one can “frolic” in a wheelchair – I’m a middle-aged, long-married man, where the closest I come to “frolicking” in my own wheelchair on a good day is a kiss on the lips from my English bulldog, Rosie.

The older I get, the more inclined I am to lie about my disability. No, I don’t lie about having a disability – I can’t hide my powerchair or profound condition. I simply lie about why I have a disability.

Now, the fact is, I just don’t get the opportunity to discuss my disability with many acquaintances these days. We live in an enlightened time, so strangers aren’t too fixated on my disability, and most people who I deal with personally and professionally already know that I have cerebral palsy based on what they’ve read and heard about me, so I just don’t get the chance to talk about my disability with strangers as much as one might expect.

As a result, when an acquaintance inquires about my disability, I’m compelled to take full advantage of the moment, sensationally exploiting his curiosity for my own enjoyment – I just can’t pass on the opportunity. I’m instinctively compelled to draw the person in close, looking him in the eyes, in confidence, with vulnerability, sharing a tale of my disability that’s unforgettable.

“When I was a young boy, my father was a religious man,” I explain. “One day, he asked, ‘Mark, do you believe in the good Lord?’”

“Yes, Father,” I replied.

“If you believe in the Lord, stand up and raise your hands to the Lord!“ he shouted.

With great faith, I stood up, raising my hands to the Lord – and, at that moment, the wind blew me right out of our convertible moving at highway speed….

As I pause and stare stone-faced at the person, I can see the wheels in his head spinning, horrified by what I’ve shared, while wondering if he heard me right?

Sometimes, I’ll smile and wink, confessing that it’s an old line from a joke that I picked up somewhere and warped it into my own use.

Other times, I simply share my father’s belief that the Lord works in mysterious ways.

If you saw me now, you’d think that I time-warped back to 1983.

Getting here wasn’t as hard as one might think. The fact is, a powerchair is my best friend in crowds, where it works almost as well as a snowplow, ushering people out of my way. Maybe even drunks at a rock concert have empathy for a guy seated in a wheelchair among a standing-only crowd, or maybe the look in my eyes – that I’m not stopping for anyone, that my 300-pound powerchair could break toes and ankles – appeals to their common sense; but, for whatever reason, I can always work my way through the most obnoxious of crowds.

And, that’s what my buddy, Dave, and I did tonight, making our way to the front row, center stage of this concert.

Now, this isn’t a big concert venue, but a club room, where there’s nothing between the audience and the band. The stage, in fact, is barely over a foot-and-a-half high, and I’m right against it, looking up at the lead singer of Quiet Riot, who’s still decked in purple spandex, a bad wig, and gaudy jewelry after twenty-five years without a hit, looking like this gig is at least fifteen years past his fitness level, as judged by his pouring sweat and labored dance movements.

At some point, a guy warned us that the flashback-frenzied crowd might surge forward, pressing us against the stage. However, with my reinforced-steel legrests touching the stage, and my push canes protruding behind me, ready to impale the crowd, no one’s pushing me anywhere.

Indeed, my game plan is working. See, in 2007, there’s nothing less cool than going to the concert of a hair band from the ’80s, whose members and fans are frozen in time, unable to see that a 1979 Trans Am isn’t the chic magnet that it once was. Yet, in 2007, there’s nothing more entertaining than going to the concert of a hair band from the ’80s, whose members and fans are frozen in time, where the skinny guy to my left – mullet, graying beard, skin-tight T-shirt, bandannas tied together as a belt – is playing air guitar and drums like he’s part of the band, and the 40-something mom to my right, with teased-up hair, hasn’t stop jumping up and down with her fist in the air since the band started playing two hours ago. Of course, the woman directly behind me – a seemingly over-erogenous DMV clerk – keeps leaning over me, trying to grab the lead singer’s crotch, and even he gives her disgusted looks, pulling away each time she gets lucky.

“In ’92, I talked to Frankie, the drummer!” Mr. Mullet yells in my ear. “Dude, I live for these shows.”

And, I believe him. But, I can’t stop laughing long enough to get as excited as he is. Sure, it’s terrific that this is a highlight in the lives of those around me. But, how any 40-year-old can think that playing air guitar at hair band concert, decades past the era, is cool, is beyond me. Maybe I’m turning old and boring, but in my circles, being able to trade stocks on your PDA while you’re vacationing on a beach in the Bahamas is cool; popping a cassette tape into the dash of your Gremlin on the way to the Quiet Riot concert is uncool.

“Dude, no one’s ever come close to their genius!” Mr. Mullet yells to me.

“Dude, do you live with your mom?” I yell back.

“Yeah, but I’m moving in with my girl!” he replies, pointing to the middle aged, pear-shaped woman next to him, poured into her black velvet top and faded jeans, screaming every cheesy lyric.

I look over my shoulder, to Dave, who’s notably out of place, wearing a fatherly sweater and slacks, unable to change since someone offered us free, last-minute tickets at work late in the day, and he’s chuckling at the whole scene, too. I look back to the stage, and read the song list taped to the floor, noting that the band is playing the last song on the list – and, I’m glad, as it must be close to midnight, and two hours of being stuck in the worst of 1983 is plenty for me.

The drummer just hit the last few beats, and the singer is thanking the crowd. I’m looking around, seeing if the packed crowd is going to immediately rush for the exits, but now I see that the crowd is freaking out again. It’s the drummer coming toward me, and everyone’s reaching toward him. He kneels down, and hands me his drum sticks, but due to my poor coordination, I can’t grab them, so he gingerly sets them on my lap.

“Thanks, man!” I yell, giving him the thumbs up sign.

Mr. Mullet to my left, and Teased-Hair Tammi to my right, look simultaneously elated and disappointed by my score, and I feel guilty, instinctively thinking that I should give the sticks away to the crowd. After all, I’m here in mockery, with no regard for Quiet Riot as musical icons, thinking that the whole scene is a Saturday Night Live skit that I rolled into. Yet, those around me have seemingly invested their entire lives in this band and scene, presumably passing on any sort of cultural growth over the last twenty-five years – that is, their receiving concert drum sticks from the drummer of Quiet Riot might be like getting blessed by the Pope, a forever link to hair band immortality. But, then, here I am, a sucker-bet, all but guaranteed to get the sticks, with the well-meaning drummer likely thinking that I, as guy in a wheelchair, have had it rough in life, that it’s probably my last wish to be in the front row of a Quiet Riot concert, that receiving the drum sticks will be a golden gift. Is it my fault that I’m a tough racket to beat at a hair band concert when it comes to societal projections of sympathy toward those with disabilities?

“I’ve waited my whole life for this,” I yell to Mr. Mullet.

“Right on,” he replies, patting me on the back. “Now, you’ve got Frankie’s sticks, man!”

I turn to Dave, and he leans toward me. “How much do you think these will sell for on Ebay?” I ask.

Dave laughs, and adds, “This whole thing is just wrong.”

Drop into my master bedroom suite on any given night, and the scene is predictable: I’m sitting at my computer desk, with my back to our TV, listening intermittently to the fluffy, feel-good shows that my wife watches from bed as I write my latest late-night ramblings and correspondences.

On this night, I’m on cue, with my wheelchair wheels pressed into their usual ruts worn into the plush, grey carpeting in front of my desk, and my wife is into the first few minutes of one of her favorite prime-time shows. As I spin my chair around, heading to the kitchen to sneak a cupcake, I see wheelchairs rolling across the TV screen.

“Oh, cool, wheelchairs,” I say, pulling up within inches of our entertainment cabinet, practically pressing my noise against the flat-screen television. “What’s this?”

“Joan of Arcadia,” my wife says.

“Cool, look, they’re playing wheelchair basketball,” I say, pointing at the screen as if it wasn’t entirely obvious. “There’s a Colours chair, and a Top-End, and a bunch of Quickies.”

I look at my wife, and her perturbed stare back at me suggests that she’s far less enthralled by the wheelchairs on TV than I am. If I’m a dog chasing its tale, she’s the wise cat watching me act like a fool. I look back to the TV, and see a guy in a Quickie GPV trying to coax a guy in a Quickie 2 to play basketball with the rest of the team.

“Hey, that guy in the GPV has stroller handles on his chair,” I shout, fingering his chair on the screen. “No one plays basketball with stroller handles – what the hell kind of blasphemy is this?”

“Stop,” my wife says, striving to break my fixation on the everyday wheelchairs racing back and forth across the basketball court.

“What the hell – look, that other guy has drop-in T-arms on his chair. No one plays basketball with T-arms,” I say, watching the guy with the Quickie 2 and T-arms roll off the court. “Good, go home and get a real basketball chair….”

The TV shuts off, and I look at my wife holding the remote control.

“Hey, I was watching that!” I shout, frustrated that she pulled the plug on my wheelchair watching and whining.

“Go away,” she’s says.

“Turn it back on,” I say.

“No,” she says. “Every time you see wheelchairs on TV, you end up yelling at the TV.”

“…Because they’re always wrong,” I say. “They never use the right types of chairs.”

“It’s a TV show, they’re actors – the guy in the Quickie walks during some of the fantasy scenes, he’s not really disabled,” she says.

“So, at least get the chairs right,” I insist. “Show me realistic wheelchair applications and I’m fine. Show me stroller handles and T-arms on a basketball court, and I’ll flip out every time.”

“Go away,” she says.

“I’m going,” I say, turning toward the hallway. “But, there better not be stroller handles and T-arms on the basketball court when I get back.”