Frolicking

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.

Mysterious Ways

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.

Letting Go Of The Wheelchair

I wish I had the universal answer, the one that applies to all – but, I don’t. Yet, it doesn’t keep me from knowing at least one answer.

For me, acceptance of my wheelchair as a “wheelchair” was always a given, where I always viewed it as a tool of liberation. Nevertheless, I’ve also understood how others can view the physicality of their wheelchair as an object of limitation and resentment in their lives – especially those newly injured – where the literal seat, wheels, and frame are a visual reality of unwanted change and anguish.

Fortunately, most people with disabilities evolve into an understanding and acceptance that a wheelchair is ultimately a tool of mobility – it helps us live more active, independent, satisfying lives, regardless of disability. Yet, some people never grow to such emotional acceptance, holding on to resenting their wheelchairs with every ounce of will, as tightly as they can grip an armrest, refusing to move toward acceptance of having to use a wheelchair under any circumstance.

In my roles over the years, I’ve worked with a host of those with disabilities who simply won’t accept any wheelchair. No, the situation is never as dramatic as one refusing to use his or her wheelchair, telling others to get it out of sight, like a scene from a movie. Rather, the mode is that no wheelchair is ever good enough, that no one can ever do enough to satisfy their mobility needs, that there is simply always something lacking in their wheelchairs – and the frustration indefinitely builds in their lives.

On the surface, there’s some validity to the perspective that a wheelchair is never good enough, never up to the standards expected, never capable of allowing a meaningful, unrestricted life. After all, if you compare a wheelchair to full mobility on your own two legs, it will never prove comfortable enough, maneuverable enough, efficient enough, outdoors enough, or reliable enough – that is, it will always prove frustrating, no matter the technology, no matter how well a provider serves you. But, is that a wheelchair’s fault?

Of course not. With all of their technical advancements, wheelchairs are still wheelchairs, with practical limitations. Wheelchairs can take us farther, faster, but they’re still a seat, with wheels rolling on the ground, and certainly can’t replace one’s fully-functioning legs – and if one intentionally or subconsciously holds a wheelchair to such an impossible expectation as completely compensating for one’s inability to walk, dissatisfaction absolutely endures.

When I encounter users who are on their third brand of wheelchair in as many years, having exhausted a handful of providers, I follow the customer’s-always-right approach to the best of my professionalism and continue the path to resolve whatever technical issues I can – but I strive not to stop there, adding in a dose of understanding and lessons learned.

Disability is complex, with limitations that no one wants, and a wheelchair is the most concrete representation of that. My cerebral palsy is within me – it’s intangible that I can’t see or touch beneath my skin. But, my wheelchair is an unmistakable object. When I roll up to stairs, my wheelchair hits them, not my cerebral palsy; when I get stuck in deep snow, it’s my wheels spinning that are the cause, not my cerebral palsy; and, when my mobility is limited in any way, it’s due to my wheelchair, not my cerebral palsy. Why wouldn’t I – or, anyone – resent a wheelchair till the end?

Because such thinking places a wheelchair in the wrong order of life’s equation, that’s why. It is true that having to rely on a wheelchair for mobility prevents you from doing 1,001 tasks that you could do if you didn’t have a disability – and some of those tasks may have been your most beloved, passionate pursuits.

Yet, the fact is, as a result of your wheelchair, there are 8,999 tasks and goals that you can pursue despite disability, and when you shift your focus from the 1,001 shortcoming of using wheelchair to the 8,999 possibilities in your life, the world opens up, and frustrations disappear.

When I’ve shared this belief with frustrated wheelchair users over the years, some have had miraculous turnarounds in their mobility, where all of their wheelchair issues went away, and they’ve followed up with me a year or more later noting what they’ve subsequently achieved in life. Still, others moved on to other wheelchairs and providers, adding my assistance to their pile of frustrations, refusing to ever accept the limitations of using any wheelchair in life, placing the weight of more anguish directly on their wheelchairs than any one model could ever hold.

No, I don’t have a universal answer to the complex emotions that some project toward their wheelchairs, but I do have an answer: If you focus less on the inherent limitations of a “wheelchair,” and concentrate more on fully living as you are, it will empower your life. A wheelchair in itself can’t evolve – but you can.

Recommending The Shoes We Wear

If a woman walked up to you in the mall and asked, “I’m shopping for shoes today, and wonder what style you recommend?” how would you answer?

Would you look down at your own shoes on your feet, and tell her to go buy them – especially if you’re wearing men’s boots, or flip-flops, or orthopedic shoes?

Of course not. In fact, before providing a recommendation, the logical person would ask, “What do you need the shoes for – work, dress, recreation, comfort?”

How is it, then, that a wheelchair user can look down at his or her wheelchair model and unequivocally recommend it to another wheelchair user without knowing anything about the person? After all, isn’t a wheelchair keyed to every intimate detail of our individual lives, far more than a pair of shoes, from our body types, to our extents of disability, to our environments, to our transportation, to our careers – to literally hundreds of nuances that vary from one individual to the next?

Absolutely. Yet, it’s interesting how quickly wheelchair users whole-heartedly recommend their personal wheelchair models to another user without knowing anything about the person, especially online. In fact, the chances are that you may have seen posts on the WheelchairJunkie.com message board and others, where someone simply posts, “I’m a mother of 3 needing a powerchair. What kind should I get?” And, people reply by unquestionably advising purchasing the specific powerchairs that they use as individuals.

Now, certainly people are striving to be entirely helpful in their replies, and that’s appreciated by all. Nevertheless, as with recommending shoes, there has to be a more complete, accurate way to help others toward selecting appropriate mobility technology, other than simply pointing to your own wheelchair, right?

And, there is – where the key to more helpful and accurate assistance toward others is in addressing wheelchairs not only as objects, but also within the context of how wheelchairs apply to our individual lives. In this way, a wheelchair isn’t viewed as a universal product, but as highly-tailored device, where each wheelchair model must be assessed in parallel with a user’s very individual needs.

Based on my career roles, people seek my advice daily on wheelchair purchases, and the first conscious effort I make when working with any consumer is to initially rule out my own 33 years of wheelchair use – the considerations have to be entirely about the person’s mobility, not mine. Toward my ultimate suggestions, I want to know about one’s physical condition, past, present, and future; I want to know about one’s living environments; I want to know one’s forms of transportation; I want to know what recreations one enjoys; and, I want to know as much as I can learn about someone within a conversation. As a whole, I want to know the context of ones mobility – the roles it must serve in one’s life – before I mention any category or model of wheelchair for consideration. It’s only by knowing such personal aspects of one’s life that I can truly surmise which type and configuration of wheelchair might meet their needs.

Surely, not every user is an expert on wheelchairs, and may not know what’s available beyond his or her own wheelchair model, not knowing of any others to recommend. However, explaining how one’s wheelchair model serves one’s own needs, through very specific examples, also proves far more helpful to other users than simply recommending a wheelchair because it’s the only one personally known – that is, rather than saying, “I have XYZ wheelchair, and it’s great,” try sharing, “I have XYZ wheelchair, which fits really well in my small apartment and on the bus,” which is constructive feedback.

The next time someone asks you for advice on wheelchair selection, I encourage you to avoid immediately looking toward your own wheelchair, but instead look forward to the person your striving to help, and make an effort to understand their fullest needs before suggesting a particular product, then apply your own experience and knowledge of wheelchair models to suggest which might work best for the individual’s needs. After all, we each of us walk in different shoes – and wheelchairs.

Sounds Of Success

The White Stripes are a cutting-edge band that creates some of the most complex, loud rock-and-roll music that you’ll ever hear, filling stadiums with bigger-than-life sounds – and, it all comes from only two people, playing a guitar and a set of drums. “Because we’re so limited, we have to be creative in what we craft,” says Jack White, guitarist, lead singer, and song writer.

Disability experience can prove a lot like playing in a two-man band, trying to compete with bands of more members and instruments. At what point, though, as the White Stripes prove, do limitations breed inspiration and success, on levels where one finds a way to turn seeming restrictions into liberation, where a lone musician can rival the power of an orchestra?

In many ways, limitations encourage focus, and focus is what’s needed to achieve success – all of which often takes place within the realm of living with disability. You’ll encounter those with disabilities who have experienced tremendous hardships, yet have achieved tremendous success in many areas of life. Indeed, it’s a seeming contradiction that hardship and tragedy – facets of many disabilities – allow or foster success, just as with two musicians filling a stadium with sounds that can only come from multi-piece bands. And, yet, time and time again, limitations – disability and otherwise – provide the focus needed to achieve success.

When Richard Pryor recently died, his widow said that Pryor’s multiple sclerosis brought clarity and comfort to his life that he’d never known, where disability encouraged him to look at himself and others with a new perspective, one stemming from understanding rather than angst. And, limitations have such an affect on many, where they’re often encouraged to see what they may have previously overlooked or ignored. Limitations, in fact, narrow one’s field in a way that clarity and focus are all but demanded, where one inherently maximizes potentials. In Pryor’s case, his focus was more demanded by circumstance than idealism, where he was always running, chasing drugs, chasing women, trying to flee his demons. However, once he literally couldn’t run anymore as a result of multiple sclerosis, he had to focus on himself and those within his family – his physical limitations created emotional focus and growth. In this way, Pryor achieved greater success as a husband and father under the limitations of his disability than previously without, proving that limitations can inherently empower.

If limitations can inherently empower, then even more remarkable success is achievable through consciously knowing how limitations can foster success. In working with many wheelchair users over the years, I’ve witness countless specialty control needs, where a user must only use a single body part and movement – a finger, foot, or tongue – to control his or her powerchair, where with focus, creativity, and tenacity, expansive mobility is achieved. The same conscious effort that goes into maximizing physical abilities – working with constraints to achieve success – applies to so many aspects of life. If a stock broker, for example, applies the same creativity, tenacity, and foresight to maintaining portfolios as one does in addressing one’s disability – identifying potentials amidst limitations – he’s bound to succeed. The key to success in all aspects of life, then, is to consciously focus on the sole areas of opportunity that you have at any given moment, and work them to fullest potentials. If your disability relates to your legs, what can you achieve with your upper body and education? If stocks as a whole are tanking, where is a sector of potential growth to enhance your portfolio? If your relationship isn’t fulfilling, in what steps can you identify that will improve it? There are ingredients to life, ones that are never constant or equal – and, it’s in assessing the ingredients in your life at any point, recognizing what can be created, that breeds resiliency and success – it’s where single instruments are played to fullest potentials.

For the New Year, all of us – disabled or not – have the chance to view our limitations as opportunities, where we can fully assess the potentials that we have, thriving and empowering our roles. You may have a few less instruments in your band than others, but play them with more skill, talent, and creativity than most others – and you will fill stadiums with the sounds of your success.

Frankie’s Sticks, Man

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.”

Screaming At The TV

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.”