The Wheelchair Unconditional

Every so often, someone comments to me that my work must be harrowing and disheartening. After all, wheelchairs signify the inevitable fact that anyone who needs one has a profound disability, stemming from birth or resulting from a life-changing injury, disease, or illness – that is, exclusively resulting from tragedy, as many would label such circumstances.

Surely, I encounter very difficult life stories everyday, where a wheelchair is a manifestation of a circumstance – disability – that no one wishes to experience or witness upon someone else. It’s impossible to learn the stories that I’ve learned over the years, and not have disheartening moments, from mothers paralyzed by drunk drivers, to children with head injuries caused by parental abuse, to medical doctors ravaged by the very diseases that they specialized in toward hopefully curing others. As a thinking, feeling person, I certainly can’t view these circumstances without a sense of empathy and despair, wondering how good people are taken down such bleak paths?

Yet, among the bleakest paths in life do lead to me and others in the wheelchair industry – or, more literally, a wheelchair – and, from my perspective, it’s at that juncture where an unexpected twist occurs in the road, an unforeseen but promising destination.

Still, the road leading to that destination isn’t a direct route. No one intrinsically wants to have to rely on a wheelchair for mobility. At best, a wheelchair is a device that many learn to value as needed in their lives; and, at worst, it’s a device that’s forever resented by some. However, the reality is, our emotional outlooks truly don’t reflect the inherent nature of a wheelchair when it appears on our horizons: A wheelchair is among the purest forms of liberation that ever enters our lives.

Indeed, we can bring all kinds of emotional and mental baggage to our wheelchairs, lamenting about what we used to be able to do, what we’ve lost, and how we’ve lost it. Yet, very little of it has anything to do with a wheelchair, itself. It’s at this point where my inspiration and passion for wheelchairs defines itself. A wheelchair doesn’t care where you’ve been or why you’re here – it just wants to move you forward in life. From the moment you sit in a wheelchair, its sole purpose is to mobilize you – that’s a powerful, irreplaceable tool.

When I work with those needing wheelchairs, many of their stories are profound. However, as much as I recognize and empathize with the struggles many face, I simply cannot view anyone’s receiving a wheelchair as anything but among the most positive events that he or she will ever experience – I know from my own life that a wheelchair will open up his or her world, even during among the most restrictive times in life.

Now, it’s an especial pleasure whenever a particular user shares my enthusiasm toward his or her new wheelchair, but it’s understandable when others do not. Some users will tell me for as long as they live that receiving a wheelchair was the worst day of their lives. And, many users have outlooks in-between, shifting over time from a view of resentment, to one of value toward their wheelchairs. Nevertheless, no matter what one’s outlook, I am like the wheelchair, itself, merely glad to assist toward enhanced mobility, where I’m most often as thrilled by the process as if receiving my own wheelchair, inspired by the fact that I know how a wheelchair unconditionally changes every person’s life for the better. From rolling across one’s home, to across a graduation stage, a wheelchair always fosters liberation – and it’s a privilege to witness the process.

In this way, the disheartening stories of disabilities that I hear inevitably take a sidebar to among my most passionate, inspired life truths: A wheelchair isn’t about what’s lost; it’s about what’s gained.

Cross-over Mobility

I was recently talking mobility technology with Rafael Iberra, legendary world-class wheelchair racer, who’s now a manager for one of the country’s more esteemed providers. There we sat in his Atlanta office – Rafy, a big, buffed guy with paraplegia, and me, a slender, spastic guy with cerebral palsy. We are two individuals whom, within the medical model, one might place at opposite ends of the disability and mobility spectrum. Yet, in reality, as Rafy and I discussed – both sitting in high-end titanium manual wheelchairs – stereotyped prescriptions of mobility technology based on classifications of disability don’t apply in the real world, as each user’s abilities, needs, and lifestyle are the real gauge by which mobility technology should be selected.

Up until as recently as a decade ago, it was commonplace for rehabilitation facilities to follow blanketing rules for prescribing mobility technology – that is, quadriplegics were prescribed powerchairs, and paraplegics were prescribed manual wheelchairs, period. It didn’t matter that maybe, as a quad, you had good use of your upper arms, and that you would be more comfortable with self-propulsion, better fitting a manual wheelchair than a powerchair. Nor did it matter that if you were a para, with shoulder problems, and lived in a very physically demanding environment like San Francisco, requiring long commutes via public transportation and sidewalk travel, you’d be better suited with a powerchair than a manual wheelchair. Clients were often merely handed mobility technology based on medically-defined classifications rather than an understanding of individual needs.

This ideology extended itself into therapy centers where, as a child, I saw myself and my friends with extremity-affecting disabilities directed toward mobility technology based almost entirely on upper-lower-extremity medical classifications – the children with spinal bifida received manual wheelchairs and the children with muscular dystrophy received powerchairs. In fact, till this day, the prescriptive rules for insurer funding of mobility technology is still rooted within the model of prescribing mobility technology based more on medically-defined classification, and less on individual needs. And it’s within the ignoring of individual needs where the fallacy of defining mobility technology for specific disability occurs — the prescription of mobility technology isn’t a fixed equation, it’s a variable application.

Even more interesting to me beyond such an antiquated medical model, is the psychology, stigmas, and stereotypes that it has spawned, aspects that profoundly influenced my own self image. As a very young child, I was fortunate to receive a powerchair. Initially, a powerchair provided me with great liberation, permitting mobility within the world at large, and fostered overall personal growth that I couldn’t physically achieve in a manual wheelchair. However, as I reached adolescence, I sought greater independence, desiring to define my boundaries as most children my age. Growing up with a disability made mobility – specifically, wheelchair technology – part of who I was, and in that way, compelled me to push my limits in that arena just as other kids may pursue sports or peer groups or fashion trends – again, testing boundaries toward self-exploration and definition. And, so for me, I chose to explore my abilities to not only use powerchairs, but also manual wheelchairs – that is, seemingly crossing over the boundaries of the era’s mobility protocol.

What surprised me most through my process of mobility exploration wasn’t the physical difficulties of learning to use a manual chair, but the stereotyped reactions I received from professionals and laymen alike toward my wishing to use a manual wheelchair. People were genuinely baffled by someone of my disability level sitting in a ultralightweight manual wheelchair – after all, why would a teenager with sever cerebral palsy want to exhaust himself using a Quickie when he had an E&J Power Premier charged up and ready to roll? The fact was, I used and loved my powerchair, but it didn’t give me the daily exercise I needed to further my physical abilities, it didn’t fit in my friends’ cars, and it wasn’t nearly as fun to tinker with as my high-performance manual wheelchair – divided mobility, powered and manual, allowed me to live a far richer life than being pigeon-holed into only one form of mobility. Nevertheless, despite the justifications I felt obliged to give toward my use of cross-over mobility, many people purely seemed aghast at my using a manual wheelchair, just as they were by a parapelegic using a powerchair.

Today, 21-years after I decided to accept both powered and manual mobility in my life, I am convinced it was among the most meaningful decisions that I ever made – cross-over mobility technology allows me to live the most active, healthy, convient life. Nevertheless, every once in a while, I still encounter stigmas and stereotyping toward those with more profound disabilities using manual wheelchairs, and those with less-involved disabilities using powerchairs. As an example, this notion recently came up while I discussed high-performance manual wheelchair design for those with quadriplegia and other four-extremity disabilities, and a gentleman commented that “any quadriplegic whom uses a manual wheelchair isn’t really a quad” – a comment as entirely absurd and stereotyped as I’ve ever heard. While the comment certainly wasn’t based in reality – there’re many quadriplegics whom use manual wheelchairs – it was based in an outdated, ignorant mode of mobility prescription based on medical definition, not individual ability and wishes. Fortunately, such views are less frequent as the age of disability awareness continues unfolding in our lifetime, but unfortunately, such stereotyping and stigmas still exist.

Despite the lingering old ideology toward prescribing mobility technology, I am inspired that, in many ways, the medical model has changed for the better, looking at mobility technology more on an individual basis than as blanket prescription. These changes are most seen through technology offerings like quad quick-release axles and projection pushrims on the sportiest ultralight manual wheelchairs, as well as light-rehab powerchairs featuring captain’s seats and one-piece footplates for users with less-involved disabilities. Indeed, the age of cross-over mobility technology is here.

Of course, it’s ultimately up to each of us on an individual basis to determine which forms of mobility technology are most fitting for our needs and lifestyles. For some, the most meaningful mobility might be manual wheelchairs; for others, the most meaningful mobility might be powerchairs; and, for still others, the right mobility might be a combination of manual wheelchairs and powerchairs – defined by lifestyle, not merely disability. To twist a cliché, cross-over mobility technology isn’t about what you have; rather, cross-over mobility technology is about who you are.

Dirty Bird

This Thanksgiving, I have a confession to make: I’m a dirty bird.

Now, at this point in my life, I think I’m achieving many of my goals, with a healthy, happy family, stable career, and virtually no vices – heck, you can even open my closets and peek under my bed, and all is as spotless on the inside as it is on the outside.

Yet, as I roll up to the Thanksgiving table this year, homemade paper pilgrim hat on my head, wearing a crisp, rustic-orange shirt and turkey-adorned neck tie, I will still have a dirty secret cloaked beneath the ironed, white table cloth: My muck-and-mired powerchair.

I swear, I try to keep my powerchair clean – I really do, especially for occasions like Thanksgiving dinner. But, I just can’t seem to keep it spotless and speckless for any duration. It’s like making a bed, only to intrinsically mess it up again the instant you lie down – that is, as soon as I clean my powerchair, it’s dirty again by the time I roll out my front door. It’s a curse, really.

Now, one might suppose that at some point during the year, when there’s a dry stretch of weather and I stick to paved surfaces, I must be able to keep my chair clean for some time, right?

Nope, not a chance. You see, I’ve been convinced ever since I was a child that powerchairs actually create mud. People say that freshly-washed cars make it rain, and I attest that clean powerchairs create mud. Sure, my wife will tell you differently, that my powerchair only gets dirty when I drive through all kinds of yucky stuff on my way to work each day, that I’m then too lazy to wipe it off promptly, resulting in a powerchair that’s always dirty. But, I’m sticking to my story that no matter how much time I spend cleaning my powerchair, it stays dirty because it simply makes its own mud.

For Thanksgiving this year, I will once again sit at our family table, the scene groomed and gracious, silverware polished, turkey tanned, where like a newscaster behind the anchor’s desk, I will look poised and picture-perfect from the waist up. However, beneath the draped, starched tablecloth will sit my dirty bird of a powerchair, having gone another year flawless in its function, but still unbathed, even on Thanksgiving – inevitably the way I like it, surely collecting a few drops of gravy and cranberry sauce on the fenders in celebration, no less.

Difficult Customers

My roles in the mobility industry are varied, and among my most rewarding is that of customer service. Often consumers and providers contact me regarding products my company manufacturers, and sometimes to assist with resolving issues, whether with a user’s chair, a provider’s service, or a pending order.

In dealing with so many people over the years, I’m still surprised when I hear an industry person refer to an in instance involving a “difficult customer,” commonly referring to a boisterous consumer, not-so-politely calling the provider and manufacturer alike. As it may surprise some, however, I can’t say that I’ve ever worked with a truly “difficult customer.” To the contrary, I’ve worked with a lot of phenomenal end-users simply trying to obtain the mobility they need.

And, a lot of them are rightfully frustrated, justly boisterous, and properly put off when we speak. Heck, a few have started out by yelling at me – but, understandably so. I look at it this way: Mobility is as essential to ones life as sustenance; yet, the entire process for some is all but impossible to transcend, all but preventing needed mobility. Too often, the funding process alone can take months, with delay after delay; then, the ordering process can be overwhelmingly stressful, not knowing what product will best meet one’s needs, having to place trust in others; then, the frustration of waiting for delivery; and, then, waiting for repairs when needed. Then, let’s add to the process the reality of everyday life for many with disabilities – health issues, unreliable attendant care, financial worries, transportation issues, and on, and on, and on. What’s more, these issues – and mobility needs – don’t operate on a business schedule, they don’t go away when others aren’t answering phones or shipping deliveries. Put simply, on a Saturday, fathom having a bladder infection, your personal care attendant didn’t show up till noon, you can’t afford to fix the transmission in your van, then add to that having to somehow survive all weekend without a working powerchair.

I could never call anyone facing similar situations a “difficult customer.” However, I certainly can call them real people, deserving absolute attention.

For those dealing with “difficult customers,” I suggest empathizing with the customer’s frustrations rather than taking offense – use understanding as inspiration toward better service. And, to difficult customers,” themselves, I say find those who understand, and reach out to them with the courtesy and dedication to which they serve you.

Cowboy Hat

This black cowboy hat seemed like a better idea than it is. The tight fit and cheap felt locks the heat in my head like an oven. I’d take it off, but it’s too late – removing the hat would ruin my image.

I bought the hat after seeing a country music video of a saddle-sore hunk wearing one, and reckoned that a black cowboy hat would be a good look for me, too – a look that would hopefully antagonize my family and friends into further questioning my sanity, as I have no country kid in me whatsoever. So, I went online, ordered a nineteen-dollar black cowboy – the cheapest that I could find – and called it a night. But, when the hat arrived a few days later, and I pranced into our kitchen with it on my head looking every bit a wheelchair cowboy, my wife merely smiled, noting that nothing I do surprises her anymore. It was then that I decided that I would wear the hat to my next public event to see how far I needed to take the theme until my wife gave me her you’re-out-of-your-mind stare.

So, here I am on a Saturday evening, leaving a speakers’ panel engagement at a New York City bookstore, wearing a white oxford shirt and black cowboy hat. My sister said that I looked hot in the hat, and I feel it, too, having worked up a sweat talking in front of fifty people for the past hour – and now I can’t wait to get in my van, rip this cow bucket off my head, and get home by eleven.

“Mark,” this woman says as I weave through the crowd, heading for the door and the cool, marine-layer breeze outside.

I slow my chair, look to my left, and a late-twenties woman bends down slightly, peeking at me under the brow of my cowboy hat. She’s tall and slender, with what my mother always called a bobbed hair cut, brunette hair chopped at shoulder length. And, she’s wearing funky, grandma- type glasses that point out on the sides. Overall, a sexy librarian, I think – always my type, smart and sexy. “Yes, hi,” I say.

“You know, I heard you speak, and you’re fantastic,” she says, kneeling down beside my chair.

I typically hate when people kneel down to speak with me. Kneeling down to speak with someone who uses a wheelchair is too scripted, taught in corporate handbooks as the best way to make customers with disabilities comfortable during conversation. I’m just under five-feet tall when sitting up straight in my powerchair, and figure that unless you want me looking down at your bald spot if you’re a man, or down your blouse if you’re a woman, it’s not preferable to kneel when speaking with me. And, this young woman is proving my practice true, as I struggle to keep my eyes above her loose-fitting, low-cut sweater.

“Well, that’s very kind – I’m glad you enjoyed the panel,” I say, noticing the constant legs in motion behind her, people making way past us as we all but block the store’s main aisle.

“Do you have a publicist?” she asks.

I laugh. “No – no publicist,” I say.

“Seriously, I’m a publicist, and would love to take a look at possibly working with you,” she says, reaching in her handbag, pulling out a business card, handing it to me.

I look at the card and it’s some sort of communications agency. “Are you Karen,” I ask, reading the name from the lower corner of the card.

“Yes,” she says, with a little too much excitement, as if she’s won something.

“It’s my pleasure to meet you, Karen,” I say, struggling to stuff the card into my shirt pocket. “But, truly, I’m the last guy who needs a publicist.”

“Everyone needs a publicist,” she says.

“Name one,” I say hoping to stump her.

“You,” she says.

“You’re quick,” I say, smiling, impressed with her wit. “I’m flattered, but no publicists for me – I’ve got enough going on.”

“Who’s publicizing your book?” she asks.

“Me,” I say. “It’s really an Internet project, focused within the disability community.”

“Well, what if we could take it mainstream?” she asks. “I get my clients on all the top media outlets.”

“I appreciate it, but, really, I’m focused on my wheelchair career – writing and speaking are after-hour pursuits,” I say. “I don’t have any wish for more press or anything like that.”

“Please think about it,” she says.

“Hey, what do you know about country venues – like country-and western magazines and networks?” I ask in a moment of inspiration.

“Sure,” she says, glancing up at my hat. “I’ve gotten clients interviews and press with all the country media outlets.”

“Cool,” I say. “More and more I’m drawn to the country lifestyle. I’ll tell you what, I’ll talk to my wife about my doing some country press, and give you a call.”

Trouble With Tongues

My English bulldog, Rosie, has an extraordinary tongue. When I say that she has an extraordinary tongue, I mean that it’s dramatically too long for her snout. When she’s sitting, her tongue peeks out between her teeth and lips like a piece of red ribbon. When she runs, her tongue flops in the wind, bouncing from her ear to the ground, then back again, flapping beside her head like a struggling kite. And, when she sleeps, her tongue drops so far out the side of her mouth that I’m tempted to roll it back up like a scroll.

But, Rosie’s extraordinary tongue isn’t wasted excess – no, she uses it to its maximum potential. Sure, most dogs will lick a child or their own paw; however, Rosie takes licking to the next level, void of boundaries, licking with no discretion toward taste, texture, or sanitation – dirt, your hair, tree bark, or carpeting, Rosie will lick it.

I’m especially amused by Rosie’s love to lick, as I, too, have always proved tempted to lick just about anything on a dare or for a laugh. In fact, I’m even inclined every so often to lick Rosie when she licks me, to her confusion, my wife’s disgust, and my daughter’s entertainment. Typically, though, my tongue doesn’t get me in trouble beyond a scolding by my wife for taking sick humor too far, like licking the oil off of our lawnmower’s dipstick, then chasing her for a petroleum-based kiss. Rosie, on the other hand, is constantly in trouble for licking what she shouldn’t be licking, with us wanting to keep her safe and healthy. “Rosie, no lick!” you often hear around our home.

Now, on the subject of doing what one shouldn’t do, I’m sure gentlemen’s clubs are known for getting guys in trouble. But, I’ve never had enough experience with them to know what kind of trouble they bring, so when I find myself here tonight, in a gentlemen’s club, it’s thought provoking but seemingly harmless, looking like a typical lounge, but with exotic dancers on the stage. My wife knows I’m here, and I’m with less-than-rowdy friends, so there’s no trouble here for me.

As I listen to the less-than-popular music played by the cliché, gravel-voiced DJ, noting the thin cloud of cigar and cigarette smoke that filters the dim light, I’m torn by the practice of gentlemen’s clubs, where men objectify women, where the women hustle men, and where everyone uses everyone in a bleak distortion of a market economy. Yet, I confess that it’s hard not to be engaged by mingling with twenty-five disrobed, gorgeous women, in a setting where I presume that my disability is less of a factor than in many situations – as long as I’m paying, I suppose that the dancers are playing.

In the context of my reservations, I’m sitting away from the action a bit, watching from a distance as a young lady, announced as Taylor, dances on the stage, noticeably staying away from the brass pole like the previous dancers, preferring to dance closer to the guys surrounding the stage.

I’ve never really had a “type” when it comes to women, preferring to address people on an individual level. But, if I had a type, Taylor is it, with long black hair, curvaceous hips, dark eyes, and funky librarian glasses – if it’s possible in the circumstance, she looked both sexy and smart. That’s my type, indeed – sexy and smart.

I pull a five bill out of my wallet, and roll up to the low-slung counter surrounding the stage. I’ve been studying the protocol, and by placing cash on the counter, the dancer comes over and focuses her attention on you for a few moments – that is, the cash on the counter is like turning on the light for a stewardess on an airplane.

And, here comes Taylor.

“I’m Taylor,” she says, standing eight-feet tall on the stage in front of me, her four-inch black heals almost at my eye level.

“I know,” I say with a wink, unsure as to what gesture to make.

“Hold on, I’ll come down to you,” she says, noting that I’m sitting back from the counter a bit, as I didn’t want to bump my knees on its edge.

She climbs down, and goes to straddle my knees, but stops, and I look from her chest to her eyes to gauge why she stopped?

“You’re married,” she says, pointing at my left hand, where my thick, white-gold wedding band shines.

“Of course,” I say.

It strikes me that if I were in a bar, trying to pick her up, I can imagine my wedding ring being an alarm bell. But, this is a gentlemen’s club, where I fathom a lot of the men are married, where there’s some sort of distinction between entertainment and intent. What’s the shocker that I’m married and wearing a wedding ring?

“Why wouldn’t I be married?” I ask.

“Because you look so young,” she replies.

“I’m thirty four, soon to be thirty-five,” I say.

“You don’t look older than twenty-four,” she says.

“Well, I’m thirty-four,” I say.

“How old is he?” she asks my friend who just pulled up a chair next to me.

“How should I know?” he says. “I’m thirty one, and he’s older than me.“

“Married, huh,” she says, turning back to me, straddling my knees, pulling my face into her cleavage.

My nose press against her chest bone, and she smells of heavy perfume, like a chain-smoking, alcoholic real-estate agent that I once had who actually sprayed her clothes with perfume out of the type of bottle that’s used to mist house plants before stepping out of her Cadillac for appointments. I wonder how Taylor’s perfume tastes? Oh, man, wouldn’t it be funny to lick her right now, with the flat of my tongue, like licking Rosie or the oil off of a dipstick, purely to evoke a reaction? But, is it wrong to lick an exotic dancer – are there boundaries, and is licking going too far? Alright, now I’m entirely compelled to lick her, just to see the consequences – it’s a self dare that I can’t pass up.

Oh man, she just pulled away, and is climbing back on stage.

I roll back to the table where my friends are sitting, and take a sip of my soda.

“What would happen if I licked a dancer,” I ask my buddy.

“Tell me you didn’t lick her,” my buddy says.

“What would happen if I did?” I ask.

“Mark, do not lick the dancers,” he says.

“So, licking a dancer is bad?” I ask.

“Look, no matter what the dancer says, no matter what the dancer does, do not lick the dancer,” he says, looking me in the eyes like my wife does when she warns me to behave. “You’re going to get us kicked out of here.”

“Fine, man, I was just wondering,” I say, going back to drinking my soda and watching from a distance, knowing how Rosie feels, always getting in trouble with her good-natured tongue.

Two Of The Same

As an adolescent and teenager, I went through a fair number of wheelchairs. On the downside, my need for a new wheelchair almost every school year was fueled out of necessity, where inferior designs simply didn’t withstand my active use, breaking frames, burning through motors, and such. On the upside, I grew up in an era when both power and manual mobility technology was evolving very quickly, where if you wished to use the most liberating technology, you had to get a new wheelchair every two years.

Among my peers, I was fortunate in that I had a small medical trust fund – and, in my teen years, an increasing connection to the wheelchair industry – that provided me the resources to obtain the latest mobility technology. Nevertheless, my good fortune didn’t seem to make selecting new wheelchairs any easier, as I was always haunted by the wheelchair choices that I had to make, where there were always two chairs that so tugged at my passions, but I had to choose just one. There was the decision between the Power and Silent Premiers by E&J, where the Silent had the horizontal motors, with the controller under the seat, giving it the sportiest look around – but I went with the Power Premier because it could be better secured on the school bus. Then, there was choosing between the Fortress 655 and the E&J Explorer, where the Explorer had better marketing, with the brochure showing it on a bed of gravel, looking unstoppable – but I chose the Fortress because it was supposed to have better reliability. And, then, there was the toss between an E&J Power Premier with 21st-Century conversion kit or the original big-wheel Invacare Arrow, which was the fastest production powerchair – I chose the E&J and 21st-Century kit because it was chain drive, and I wanted a chair that rumbled like a motorcycle. And, on the manual side, the decisions were no easier, with choices between Quickie or Quadra; Liberation Concepts or Jerry Smith; Magic in Motion or Top End; Etac or Kuschall? And, so, I built a legacy of mobility decisions – punctuated with pained choices.

Throughout those agonizing decisions, what I didn’t realize was that my difficulty in choosing one mobility product over another ultimately had very little to do with comparing the specifications of two wheelchairs. In actuality, my difficulty in choosing one wheelchair over another came out of my desire for utmost mobility, where the possibilities of every new wheelchair seemed so endless that choosing one surely left some sort of unrealized potential on the table by not choosing the other.

Interestingly, my fears never proved true, where every wheelchair that I chose dramatically increased my mobility, improving my life in big and small ways alike – in that way, my choice was always two of the same.

What I’ve realized is that meaningful mobility doesn’t come from agonized, remorseful decisions. Rather, meaningful mobility stems from the resolute decisions that we make, and living life to the fullest with the wheelchairs that we have.