wheelchairs – PowerchairDiaries

Foul Mouth Kids

By Mark E. Smith

In my neighborhood, none of us kids took anything from anyone. It was where the two sides of the tracks intersected – upper- and lower-class kids intertwined. Neither had much parental guidance. You just never knew where anyone’s parents were. Some were drinking in dark bars in the afternoon, others working in the city in high-rises till all hours, and some straddling both lives. Because of this, in my neighborhood, most kids had free reign from parents, and when out wondering our suburban streets, you didn’t take gruff from anyone.

Being the kid who used a wheelchair didn’t make me exempt from any of it – the dysfunctional home, taking jabs from the other kids or dishing it back. Mostly, though, I kept to myself after school. At 14, I had a lot going on teaching myself to be independent with cerebral palsy. I was three or four years into my mission of being as independent as possible and I saw a lot of progress. My main self-therapy was pushing my manual wheelchair for two hours or so after school every day. The repetitive motion of pushing my manual wheelchair was a sound exercise in strength and coordination. But, I was dismal at it. I’d started a few years earlier barely able to propel across our living room, and by this point, I could make it around our neighborhood. Yet, there was no grace in it.

I pushed painfully slowly. Really, it wasn’t even pushing – pushing implies consistent movement. For me, it was push, roll feet or inches, regather my flailing, spastic limbs and then push again. All that mattered, though, was that I was seeing progress.

As I went out each day, I purposely stayed on quiet streets. I needed to do what I had to do and didn’t want to be bothered. Besides, I never knew if anyone would understand why I was doing what I was doing, and I didn’t want to have to answer any questions. When I was eight, I was in a grocery store trying to buy a pack of gum and an elderly woman made a huge scene that crippled people like me shouldn’t be out alone in public. That experience shook me a bit, and I suppose it made me want to avoid such a scene while out pushing my manual wheelchair, self-aware of how awkward I looked. So, the side streets were my sanctuary, where I could push and progress at my own pace, in solitude.

There was a hill leading to our driveway. It wasn’t the steepest of hill, but long – maybe two blocks – lined by vacant land on each side. It took me a good year to get to where I could push up that hill myself, but I got to where I could do it, although it was forever a challenge, inch by inch.

One afternoon while halfway up the hill, a group of neighborhood kids came up from behind me.

“Need help?” one of them asked as they all surrounded me.

“Do I look like it?” I asked with an attitude, pushing toward a boy standing in my path.

“Yeah,” they all replied at once, laughing.

“Screw you!” I shouted, giving my chair another push, wanting to be left alone.

“Screw you!” they shouted back as they walked in front of me.

“You’ll never make it up the hill, retard,” one kid yelled.

I pushed even harder.

“And I’m going to kick your ass in school tomorrow!” I yelled.

Of course I made it up the hill, and I didn’t kick the kid’s ass in school the next day. I guess achieving one of my two goals wasn’t bad considering the circumstances.

Rounding Third Base

By Mark E Smith

There’s a counter-intuitive nature to adversity that you can’t understand or appreciate unless you’ve experienced or witnessed it. It’s a realm where, as a complete contradiction, weakness becomes strength, heartbreak becomes joy, tragedy becomes fortune. It’s where life sends you a devastating blow, only to usher in unexpected triumphs of the soul.

Two weeks ago, at this writing, I was involved in the still-unfolding story of a 10-year-old boy. On March 9, 2015, his family was involved in a devastating car accident, the jaws of life employed to remove the 10-year-old. While the parents, fortunately, quickly healed, the 10-year-old was left a C-4 quadriplegic.

Many people casually describe such a spinal cord injury as chest, down paralysis, it’s not. It’s truly chin, down paralysis. See, The fourth cervical vertebra is the level where nerves run to the diaphragm, the main muscle that allows us to breathe. It separates the chest from the abdomen, and when it contracts, air is sucked into the lungs like a bellows. No contraction, no sucking, no breathing. People who survive spinal cord injuries at or above this level need ventilators or machines to breathe.

And, so in a scene unfathomable to most, this 10-year-old boy lay in a hospital bed on a ventilator, his body motionless since March. As the boys of summer ramped up for little league, he wasn’t among them. Then, in the most tangible moment to date of how permanent his disability is, two weeks ago, his new power wheelchair was delivered to his bedside.

No, this wasn’t a typical power wheelchair. It was small, built for his childhood stature. It had a ventilator on the back. And, rather than a hand control, a small joystick was mounted aligned to match his chin and mouth.

It took a lot to get him in the power wheelchair – everything takes a lot at that injury level. Tubes had to be routed, his body positioned and strapped in. And, all the while his parents watched with fear and sorrow in their eyes, not knowing what the outcome would be – what it will ever be. It was a scene no parent can even process.

But, then, amidst all of the logistical and emotional chaos, all became still, quiet. And, with a touch of his lower lip on the joystick, the power chair moved – he moved for the first time in months. A world of tragedy and confinement was transforming before everyone’s eyes into hope and liberation. Soon, he was independently driving up and down the hospital halls, a special version of seeing your son rounding third base.

And, as the clinicians and his parents transferred him back into bed, it finally happened. For the first time since his accident, he screamed and cried. No, not because of the extent of his injury or the realization of all that has been seemingly lost. No, he cried because he wanted his power wheelchair back – it was his freedom – and he wanted to be racing up and down the halls, not back in bed.

Indeed, there is a counter-intuitive nature to adversity, where that 10-year-old boy teaches us that weakness can become strength, heartbreak can become joy, tragedy can become fortune. It’s where life sends you a devastating blow, and you ultimately can experience triumphs of the soul.

A Power Chair, a Warehouse, and Me

By Mark E. Smith

How fortunate are we when life hands us an unyielding passion? And, sometimes life-sustaining passions stem from the most unlikely of sources. In fact, they almost always do.

At the age of five or so, with severe cerebral palsy, I was blessed to have an occupational therapist place me in a power chair, and I went from a world of confinement to one of liberation at the touch of a button. And, I haven’t let off of the joystick since.

Thirty nine years later, I remain not just passionate about power chairs, but obsessed. I know the empowerment they bring, and I live it. My career revolves around power chairs; my personal life revolves around power chairs; and my friends revolve around power chairs.

But, my power chairs aside, here’s what’s amazing about having such a passion: no one can take it away from you because it’s your intrinsic life force. Lot’s of people like what they do. However, a passion is what you love to do, what you’re compelled to do – it’s who you are – and nothing can change that.

So, at 44, after 39 years of using a power chair – despite all of my life’s accomplishments – there’s still that one, ultimate thrill for me: when I have an awesome new power chair, as was the case this past week, where I immediately become that five-year-old again (a secret warehouse as my personal race track), where I feel an awe-inspiring sense of liberation and empowerment that wipes away all of the complexities of life – and I’m just living my passion to the core.

Video

Wheelchairs in Heaven

By Mark E. Smith

Every so often, a well-meaning soul of tremendous faith says to me, “You need not worry, there are no wheelchairs in Heaven.”

And, while I appreciate the deep, faith-based perspective of such individuals, I have to bite my tongue to keep from exclaiming, “What do you mean there are no wheelchairs in Heaven! How am I going to get around?”

I’m no theologian, but I understand the Judeo-Christian belief that there is no suffering in Heaven, and this is what individuals are truly getting at when they make such comments. And, I share the belief that there is no suffering in Heaven.

However, their words on this earth imply that I am suffering, that in Heaven, God will make the injustice of my life right. Yet, my faith says that they have it all misunderstood.

See, God made me right. Is my life in living with cerebral palsy a bit physically different than others? Of course. But, no one can justly declare it as suffering or needing to be resolved. Such beliefs are rooted in the unintentional ignorance of individuals, not in the intentionality of God. If we are to believe in an intentional God, then we must likewise believe that each of our lives was blessed with beautiful intention. My faith says that my cerebral palsy is part of exactly who I’m supposed to be, today, tomorrow, eternally – and I’m blessed with that. None of us need miracles, as we are already each a miracle.

In this way, if we are to have true faith, we must believe that each of our lives and circumstances has been created with an intention and purpose that some may not have the earthly insights to recognize. But, that’s OK. As long as we know our own value, intentionality and purpose, we know we’re blessed with being exactly who we are, perfect as-is – on earth as it is in Heaven. Just as houses of worship have accessible parking, wheelchair ramps and elevators, I’m positive that there’s an awesome custom-fit wheelchair awaiting me in Heaven.

The Real Investment of Complex Rehab Technology

By Mark E. Smith

I strive not to overlap my print writing with my online writing because, really, there’s too much of my work floating around the literary world as it is. How much of me can any one reader take? However, I’m crossing my own boundaries and linking you to a very poignant piece in this month’s print edition of Mobility Management Magazine. You’ll learn a bit more about my life journey — and hopefully a bit more about others’ and your own. http://mobilitymgmt.com/Articles/2014/06/01/Complex-Rehab-Technology-Investment.aspx

Fake Empire

By Mark E. Smith

I don’t know, sometimes we must wonder. Were they words from the heart or just an amateur blunder?

See, he’s an occupational therapist by education, who now reps complex rehab power chairs in the Southwest of the nation. And, he was on YouTube talking about his clients, where he views his job as science. And, he was right on site, with the words he spoke, where all of us with severe disabilities have known the liberation of a wheelchair from when we awoke – from an accident or birth, ever since rolling the Earth.

But, then he said something about his clients that hit me at my core, where I immediately cringed, my jaw dropped to the floor: “…I’ve always wanted to fix people,” implying that those he serves are broken …Those were the words he’d spoken.

As ones with disabilities, are we broken? …To me, that wasn’t what he implied, but from his ignorance, it’s truly what he’d spoken.

Man, 2013, and without inhibition, there are still even those in the mobility industry who dismiss us based on condition. How is that acceptable by any standard? Just because we use wheelchairs, our societal value is still being slandered.

Now, I don’t wish to criticize another man or place blame because that’s not who I am. However, I wonder why one supposedly serving those with disabilities labels us with such shame? I mean, where’s he come off making us his professional token? Broken? It strikes my heart to hear such words spoken. Yes, we may have disabilities, but who is he – or anyone – to diminish our dignities? Broken? Token? Don’t use hurtful words to place me, we, us in the back of the bus. You, me, we, and us are perfect as we are, and no one has the right to judge us from the leather driver’s seat of a luxury car.

It’s a sad moment in time when one who professes to care actually hurts those one serves, where one doesn’t extend the respect that everyone deserves. Just because you can walk, that makes you a hero and martyr? How about coming off of your pedestal and see those of us with disabilities as real people – that’s a good starter.

And, could one convince my daughter that her father is broken due to disability? Nah, at 16, she’d see right through such bigoted hypocrisy. And, if a man and his company are bold enough to promote patronization, as one with a disability, I’m not going to tolerate their degradation. Maybe it’s easy for some to look past loaded words – hurtful – and just forget it. But, I can’t, and to him in his heart, soul, and mind, I hope someday he will get it.

But, for now, on the topic, I have just a few more words for those who made his video: learn to respect all of diversity, and most of all, please learn to edit. Learn not to record or broadcast a pitiful lack of simple human etiquette.

Dignity toward all is something we extend, not rob. And, if you’re not doing that toward those who you serve, my advice is to reassess what’s in your head and your heart – then find another job. Until you can respect those of us with disabilities and the equality we deserve and desire, you’re not a specialist of anything, but merely living half awake in a fake empire.

The $29 Advocate

By Mark E. Smith

In my recent HME News column, I talked about how, unlike in the classic 1975 School House Rock song, a bill isn’t just a bill, rather, it’s about people, not paper, where getting legislation passed is about Capitol Hill face time, convincing our elected officials and their staffs to sign-on and support disability-related legislation is vital.

Indeed, I was privileged again this spring to be on Capitol Hill – as an advocate, not just a bill – summoning support for H.R. 942, the 2013 version of the Ensuring Access to Quality Complex Rehabilitation Act. We’ve introduced similar versions for several years now (much like in School House Rock, bills low on the priority get stuck on the steps of Capitol Hill, and fall off of the calendar, needing reintroduction). However, this year’s version, we believe, has a real chance, as face time and the quality of the proposed bill seem to have converged, where our elected officials have off-the-record at least noted it as a no-brainer, namely because it serves those with severe disabilities so well. See, H.R. 942 doesn’t just help protect complex rehab technology funding, but it eliminates the “in-home-use-only” rule; it allows those in long-term care facilities to qualify for vital technology like power wheelchairs; it sets standards so that technology is only prescribed to those with appropriate conditions; and, it further elevates the education and licensing of providers. Therefore, H.R.942 isn’t just about protecting funding, but also it’s about safeguarding consumers. And, it’s a cost-saver. For example, Medicare currently spends $1.6 billion annually on pressure sore treatments. H.R. 942 ensures access to both the right seating and clinical services to help prevent pressure sores. In this one area alone, a staggering amount of long-term healthcare costs could be saved, arguably hundreds of millions of dollars in the least.

But, again, H.R. 942 isn’t about paper, it’s about people. And, on the Hill with me, lobbying, were among the most amazing advocates, from a dozen or so of us who use complex rehabilitation technology, to clinicians like Gerry Dickerson, who have dedicated their lives to elevating – and, truly, creating – the field of applying complex rehabilitation technology to increase the quality of life for those of us with severe disabilities.

However, what struck me most about this spring’s lobbying effort, coordinated by NCART, was that we all are ordinary people doing the extraordinary – there’s no magic to making a difference, just dedication and tenacity. I mean, Mickae Lee and Jen Westerdahl are both single moms (and Mickae works two jobs!), yet they scheduled and coordinated hundreds of meetings for our lobbying day, literally staying up till all hours for weeks before the conference to make sure the schedule was complete. That’s the beauty of a democracy – anyone can help foster change with good ol’ effort.

I’ve been on the Hill quite a bit, more than maybe even I presumed, as in a few of my meetings, I was greeted with, “Mark, back for your semi-annual visit, are you?” See, the way it works is that anyone can make an appointment to meet with an elected official or staff (more commonly staff), and in our case with a proposed bill like H.R. 942, we have 15 minutes or so to make our pitch – and a lasting impression.

As a Pennsylvanian, that’s usually my lobbying territory, where I met with my two senators and four congressional staffs. Sometimes I’ll sneak in my old state of California, if needed. Nevertheless, six meetings in one day is a pretty intense schedule, where the size of Capitol Hill and its buildings makes it a race from one meeting to the next. I mean, when you have 15 minutes to get from the Rayburn building on one side, to the Dirksen building across the Hill, you put your power wheelchair in high gear!

I had the pleasure of tag-teaming with Matthew Clark, a wheelchair user from Philadelphia, and he’s emblematic of what I’d describe as the truest advocate – it all comes from the heart, just a guy making a difference. You’ve likely never heard of Matthew, as he’s not in the pages of New Mobility magazine, nor does he work in the mobility industry. He’s a photographer and filmmaker who told me, ”I do this [advocacy] because it’s the right thing to do.”

And, Matthew is astoundingly good at lobbying. Going into a congressional office with him was like walking onto a basketball court with Michael Jordan back in the day – you know you’re in the trenches with the best of the best. For starters, he has an I.Q. that has to be 140 or more, able to recite complex facts and figures by the dozens, making the H.R. 942 fact sheet obsolete. And, then, add to that his wit and charm, and he’s untouchable in meetings, winning everyone over with his eloquence and sincerity.

So, as lucky as I was to end up partnered with the best consumer advocate I’ve ever worked with, I wondered how he ended up on the Hill that day? The answer, $10. As he shared with me, long-haul buses travel between Philadelphia and Washington DC, and much like with airlines, the fares fluctuate, where he scored a $10 bus ticket down, but was admittedly disappointed that it was $19 to return home. Literally, Matthew was taking Capitol Hill by storm, advocating for millions of Americans with disabilities, on his own time and effort – all for $29.

Again, everyone lobbying on the Hill that day had his or her own remarkable story. Yet, when I think about Matthew Clark, he embodies advocacy at its best: One person, one voice serving the interests of millions. And, it proves such a valuable lesson to all of us. You don’t need fame, fortune, or formal training to help create legislative change – just the self-initiative to get involved.

Sometimes Wheelchairs Should Just Be

By Mark E. Smith

It’s a beautiful fall, Saturday morning in Midtown Manhattan, among the few times of the year when the city slows down on tourism, after the summer and before the holidays. Theatre tickets and restaurant reservations are easy to come by, and the winter weather has yet to set in. And, my daughter and I are glad to be here, our weekend getaway.

In fact, I’m hustling to write this because wheelchairs aren’t of much concern to me this morning. I’m thankful that my power wheelchair liberates my life and will escort me around the city with ease today, as it has liberated my life every day for the past 34 years, starting when I began using one around the age of six. But, there are a million other interests on my mind this morning – namely enjoying a day in the Theatre District with my daughter. Indeed, wheelchairs are blessings – and the liberation they bring is astounding – but my use of a wheelchair certainly can’t steal the spotlight from being in Manhattan with my daughter this day – nor can my wheelchair distract me from the countless other joys in my life on a day-to-day basis.

Working in the mobility industry and delving deep in disability culture as a writer and advocate – and merely as a guy who uses a wheelchair – it always disheartens me when I see people so hyper-focused on their wheelchairs as an object that it takes a destructive toll on their lives, removing them from the many potentials around them – a mindset not based in disability, but more so based in traumatic emotions.

Interestingly, a few weeks ago at Medtrade – the mobility industry’s trade show – a salesperson asked me a fascinating question that ultimately ties into where wheelchairs, when over-emphasized, destructively fit in the lives of some: “We’re in this convention center full of fantastic technology and truly caring people, and yet some consumers who we serve seem to despise every product and all of us,” she noted. “Why is that?”

“They don’t truly hate the products or us,” I replied. “Rather, they dread what we and everything in this convention hall represents – their frustration toward disability overall.”

Unlike my realization that my wheelchair is but a liberating tool to pursue the entirety of life, for some, the fact is, disability-related products like wheelchairs aren’t about technology, but psychology, where they transcend mechanical parts and become manifestations of negative emotions. After all, there’s little tangible about disability – you can’t literally see or touch genes, cells, or nerves in everyday life – but a wheelchair is unmistakably touchable, there’s gravity to it. And, many resent the reality that a material object like a wheelchair seemingly represents: Disability.

We sometimes see a denial of disability directly linked to the literal denial of using a wheelchair. Parents of children with disabilities will sometimes put off getting their children wheelchairs past the age of when they’re ready, opting to keep them in “mainstream” strollers till the age of four or five, and sometimes even longer. For these parents, a wheelchair is so representative of disability that they can’t bring themselves to physically place their children in wheelchairs because they’re not ready to fully accept that their children have disabilities. We rationally know that a child is no more or less physically disabled whether seated in a stroller or a wheelchair (and most children could, arguably, gain greater independence by using a wheelchair instead of a stroller); yet, in the minds of some parents, the tangible nature of seeing their child in a wheelchair declares disability once-and-for-all – a declaration that they don’t wish to face.

Similarly, some adults with progressive disabilities will avoid mobility products as a way to psychologically avoid fully acknowledging disability. Despite a lower quality of life due to a lack of mobility or a risk of falls, some adults simply refuse to use a wheelchair, thinking that it defines disability, rather than realizing that their actual medical conditions define disability (and, again, the fact that they overlook is that a wheelchair would make them more mobile, not more disabled).

Then, seemingly to the contrary, but of the same troubling emotions, there are those who hyper focus on their wheelchairs, dwelling on every little nuance, day in, day out, where it consumes their thoughts. Using a wheelchair is so emotionally wrenching that their feelings are transposed onto the wheelchair – and they’re not letting any of it go. Their wheelchairs become the central focal points of their existence, where a sense of loss of control over their bodies becomes a compulsion to control their wheelchairs. Their whole lives revolve around thinking about their wheelchairs, where room for other interests and interactions diminish.

Of course, some take an unhealthy over-personalization of using a wheelchair and project it onto others. If a therapist recommends a wheelchair for a child, parents can sometimes see the therapist as an enemy. How dare you try to make my child more disabled! And, there are adults who will tell you that everyone in the mobility industry is evil. Again, it’s reflective of some taking all of their emotions surrounding disability, and projecting them upon anyone or anything associated with a wheelchair. In their eyes – subconsciously or otherwise – a wheelchair is disability, and anyone associated with it is the enemy. And, some individuals simply can’t get past such self-destructive thinking surrounding disability – that is, they need a scapegoat, and the wheelchair is there.

Unfortunately, none of these outlooks are healthy, and all are trauma-based behaviors – that is, from denial to obsessive compulsions, these are unhealthy reactions toward disability. A wheelchair should physically liberate us, but not emotionally restrict us. A wheelchair may relate to disability, but it shouldn’t represent disability. And, a wheelchair may enhance our lives, but it shouldn’t consume our lives. It’s such negative projections upon a wheelchair – which is merely an inanimate object – that can dramatically debilitate the lives of some, whether avoiding a wheelchair or obsessing over its every nuance.

The fact is, a wheelchair is ultimately a small part in the grand scheme of a healthy life. Yes, it’s a vital tool that we can’t live without, and let us feel blessed by its liberating roles. But, when a wheelchair is at its best, it’s not in the forefront of our lives, but in the background – the vehicle that gets us to the far more meaningful aspects of life like education, employment, family, friends, and community service.

Let your wheelchair quietly be in the shadows while the entirety of your life shines in the spotlight. Sometimes we all have to remind ourselves that a wheelchair is just a wheelchair, and living our lives unencumbered by it – physically, emotionally, and mentally – is where true liberation is found.

People Talking as People

By Mark E. Smith

A friend recently had me send him a replacement thumb screw to optimally secure a shroud piece on his power wheelchair. It was held on by a remaining screw on one side, but, absent the second screw, it sat crooked, ajar. “I just want to shut people up about it,” he said, noting the non-stop comments from his family and friends, constantly asking, Aren’t you ever going to fix that thing?

It really is amazing how bold people are toward commenting on our wheelchairs – and, when I say bold, what I really mean is unoriginal, idiotic, and even disability-phobic. After all, when was the last time a stranger made a creative, intelligent comment about your wheelchair? Chances are, rarely, if ever. …It’s always an unoriginal, idiotic comment like the greeter at Wal-Mart saying, Now, no burning rubber in here!; or your uncle, Harry, who says, We should soup that up with a gas engine!; or the nurse who asks, You’re not going to run me over with that, are you?; as you follow her down the hall at the doctor’s office.

My personal favorite – and, when I note favorite, I mean the most unoriginal, idiotic, never-ceasing comment of them all – is during every winter, when all I hear for six months is, Do you have snow chains for your wheelchair? And, undoubtedly, each person who asks me that wise-crack question thinks that he or she is the funniest, most original comedian out there – except that he or she really isn’t, merely stating the unoriginal and idiotic. Sixteen people made that comment to me on a single snowy day – I counted! – and I simply started replying, No, but I have duct tape… and I’m going to put it over the mouth of the next person who asks me that idiotic question! But, people kept asking, no less – there apparently isn’t enough duct tape to stifle the unoriginal and idiotic.

The other one that I love – to hate! – is when people ask me why I don’t clean my power wheelchair, when they know that it’s been raining or snowing for a week. I always want to reply, If you drive your car to work in the rain or snow, it gets dirty, just like when I drive my power wheelchair to work in the rain or snow, it gets dirty. What part of this equation don’t you comprehend, Einstein?

Most recently, I’ve inadvertently brought the unoriginal, idiotic comments toward my power wheelchair to whole new level, where they’re strikingly consistent, no matter the weather or occasion. I’ve had my “everyday” power wheelchair for about four years, and it’s gone through hell and back – driven thousands of miles, through countless thunderstorms and winter snow, caked in road salt for months at a time. And, so after such abuse, I understandably needed to replace my rear caster beam. In today’s limited funding climate, where many struggle to get basic mobility, it would have been unethical and immoral of me to simply order up a new caster beam for my wheelchair through my own company’s inventory system – there are too many people in need for me to be patching up my own wheelchair with new parts when such parts should go to others in need. Instead, I waited till our Service department had a used caster beam in reasonably good shape, and I had them recycle it onto my own wheelchair in need. The beam, as it turned out, was a different color than my frame; yet, that was of no concern to me – my goal was to have optimal mobility without impacting others with disabilities, so I was merely thrilled to have a good, used caster beam, regardless of color.

However, I didn’t consider the single, unoriginal, idiotic question that my mismatched-colored wheelchair would forever invite: How come your hood doesn’t match the fenders? As if I’m stuck in a never-ending episode of Seinfeld, every unoriginal, idiotic Neanderthal asks me that exact question, thinking that he or she is freakin’ hilarious: How come your hood doesn’t match the fenders? I suppose that I could take the time to explain the socially-responsible reason why my caster beam doesn’t match the rest of my wheelchair, but it would be like trying to explain the moral dilemmas of Dostoevsky’s Crime and Punishment to a three-year-old.

The larger issue is, however, why are people so quick to make unoriginal, unintelligent comments about our wheelchairs? After all, as those with disabilities, we don’t make unoriginal, idiotic, stereotypical comments to strangers about their appearances, nor do those who are able-bodied make such comments to each other. For example, a Wal-Mart greeter is allowed to say to a wheelchair user, Now, no burning rubber in the store!, but would be fired if he or she said to every overweight person, Now, no eating everything in the store! Both comments, at their core, are offensive; yet, culturally, one is allowed to call attention to a stranger’s wheelchair, but not allowed to make a wisecrack regarding, say, a stranger’s weight – what’s the basis for such a discrepancy of socially-acceptable behavior?

The answer resides in remaining disability phobia, where some people just don’t know how to act around those with disabilities, so they try making small talk centered around one’s wheelchair – and much of it ends up sounding really, really stupid, if not downright offensive to some.

I know a guy who works on the motor end of the power wheelchair industry, and based on my understanding of his background, prior to his entering the industry six years ago, he knew nothing of disability – and possibly still doesn’t. See, he knows me – and those around me – very well, but treats me very differently from others. When he sees everyone else, he greets them by name; however, whenever he encounters me, he simply says the same thing every time: Man, those motors are quiet!, referring only to my wheelchair. He’s said it to me hundreds of times, in every sort of setting. He could be talking to a group of people, and as I roll by, he’ll shout it at me – Man, those motors are quiet! It’s never, Hi, Mark, how are you?, just the same old, annoying comment: Man, those motors are quiet!

Why, though, does he insist on shouting that singular phrase at me year after year, rather than simply greeting me like everyone else? The first possibility is that he has a clinical fetish for wheelchair motors, and can’t control his “urges” when I roll by. Of course, a more likely possibility is that he lacks the capacity and comfort level to interact with those who have disabilities, and instinctively focuses on that which he’s comfortable with – motors. Therefore, saying, Hey, Mark, how are you?, to me, the guy with the disability, is so far outside of his comfort zone that the best that he can squeeze out is, Man, those motors are quiet!

Indeed, it’s a striving toward comfort level that ultimately motivates most of the unoriginal, idiotic comments that we receive toward our wheelchairs. People truly aren’t trying to be stupid and annoying, but actually gracious. Many without disability experience want to reach out to us as people, but aren’t sure how, so they stumble over themselves, using the obvious – our wheelchairs – as a conversational ice-breaker. And, that’s an effort on their parts that we should appreciate. Rather than avoiding those with disabilities as an unknown, others are taking the chance to start a dialogue with us – albeit, awkward, with unoriginal, idiotic comments – and it’s our role to then seize the opportunity, where we have a chance to engage with them in dialogue, where they then can see us as just people, after all.

The next time that someone makes an unoriginal, idiotic, comment about your wheelchair – Do you need a license to drive that thing? – try not to be annoyed or dismissive, but use it as an opportunity to open an immediate dialog, where the conversation quickly moves from your wheelchair to you as a complete person. You’ll likewise be amazed at how quickly you, too, will see the individual in front of you transform from an unoriginal moron to a sincere person, where everyone’s initial assumptions breakdown, and you just become people talking as people.

Learning the High Road

By Mark E. Smith

Most are lucky to have one influential figure in their life, and I’ve been fortunate to have several. Arguably my closest mentor today is Poppop, who everyone in New York City and West Palm Beach knows as my grandfather.

Poppop isn’t my biological grandfather. See, I married into a traditional, patriarchal, New York Jewish family – a stretch for me coming from the wrong side of the tracks, of divorced parents, where I was raised borderline catholic at best. Yet, almost 20 years ago, Poppop welcomed me into his family, not just as his grandson-in-law, but over the years, closer to his literal grandson or son.

Poppop is the real deal, a pull-yourself-up-by-your-bootstraps-and-make-something-of-yourself Jewish immigrant. He came to the U.S. as a child, and began selling leather wallets on New York City street corners during the 1920s. By the 1930s, he lugged a bag full of leather goods, selling door-to-door, experiencing tremendous discrimination as a Jew. By the 1940s, he was the top salesman of a leading leather goods company. And, by the 1950s, he was president of the company where he was once a salesman. Then, his business accomplishments really skyrocketed. In the 1960s and 1970s, Poppop owned the largest percentage of the U.S. leather market, where if you bought any leather goods, from purses at Macy’s to the leather interiors of Cadillacs, it was from Poppop’s company. As he reached retirement age in the late 1980s, Poppop sold off the various components of his company, heading off to follow his passions of golf, travel, and charity, till this day dashing between West Palm Beach and New York City.

As I went from academics into the mobility industry years ago, Poppop became my foremost mentor – my business school of sorts, teaching me much of what he’d learned about customer service, quality products, and, above all else, extraordinary ethics. What’s more, in recent years, Poppop has brought me into his circle of friends, where I’ll spend Saturday afternoons outside the kosher deli near his home during the summer, listening to stories by some of the greatest businessmen of all time, who founded mega companies that we all know today, who have over-the-top accomplishments like winning the America’s Cup in sailing. I admit that I don’t contribute much to the conversations – as I can’t hold a candle next to these guys – but I use every opportunity to ask questions and listen, learning all that I can from these amazing men in their sunset years.

You’re only as good as your product, and your product is only as good as you.

If your product or service isn’t self-evident, then you don’t have one.

The only way to make money in the longterm is to put people before profit.

Never, ever speak ill of a competitor or product, as it does nothing more than reflect poorly upon you.

The only opinion that counts is the customer’s.

These are just a few of the creeds that I’ve learned from Poppop and his peers, and they are tenets that I’ve striven to apply without compromise within my roles in the mobility industry, where my goal isn’t to be a titan of business, but to merely do what’s right by my peers with disabilities. In this way, you’ll always see me practice what I’ve learned and believe, and noting my now trademark consumer-centric phrases like, The question isn’t what’s the best wheelchair; rather, the question is, what’s the best wheelchair for you? and, If you think it’s the best wheelchair on the market, then you’re right – your opinion is truly the only one that matters. And, as I trust you’ve witnessed, I live by those mottoes. Sure, I work for a specific manufacturer, but like a doctor who’s taken the oath, my moral, ethical obligation is to put a consumer’s mobility above all else – after all, that’s what the mobility business requires.

I’ve been inspired that many others in the mobility industry share my ethics, where many recognize that no single product is right for everyone, that we must have equal respect for all products that liberate consumers. Yes, there’s business competition, but there’s also an unspoken, ethical agreement that you don’t engage in any practices intended to deceive or harm consumers’ interests to simply sell your product over another. And, all have followed that business ethic in our industry to a remarkable degree – that is, till now.

I’ve been disheartened in recent weeks as I’ve witnessed the mobility industry become fractured by a sole manufacturer who has violated our code of conduct by distributing a video that ultimately bashes many of us competitors in the industry. Even worse is that the video intentionally strives to mislead consumers, a ploy to put money before mobility, profit before people. For the sake of integrity and standards, I’m not going to mention the manufacturer or link to the video, but in no uncertain terms, they use trickery and video editing to make virtually all leading power mobility products look really, really bad – to the point that if their efforts weren’t so shameful and unconscionable, it would be comical. To give an analogy of how rigged the video is, it would be like a boat company showing how their competitors’ boats will sink, while they’ve clearly drilled holes in the bottoms.

Of course, mobility products aren’t luxury items like boats, but are profound, life-sustaining devices that we rely on for our independence – and that’s why I find the manufacturer’s tactics and video so disturbing. For a manufacturer to spitefully disregard the value of our lives as those with disabilities by putting out a deceptive, misleading video of trickery, designed to scare consumers away from all mobility products that compete against theirs, crosses a line of basic human integrity.

The question, however, that I have is, Why did the manufacturer – and ultimately its individual employees – go as far as to make a video bashing among the mobility industry’s most-proven products and strive to deceive consumers?

To answer the question, I have to go back to sage advice from Poppop and his peers: Nothing clouds business judgment like desperation.

If the manufacturer is losing the battle in the mobility market bit by bit, I suppose they figure that they’re down to their last option: Play dirty.

Undoubtedly, some will fall for their skewed, deceptive, heavily-edited video, so they’ll get some results. And, maybe they’re even glad to have gotten under my skin, high-fiving each other in their cubicles, saying, See, we even got Mark E. Smith talking about us! However, any scant results from the video can’t make up for the loss of respect that they’ve invited by offending virtually everyone associated with mobility products.

Indeed, their video makes me angry, and even a bit ashamed to know that a manufacturer in my industry would stoop to such low levels. However, I ultimately have to cut them some slack, knowing that they haven’t been as fortunate in life as me, where I’ve had Poppop to not only teach me the right ways to succeed in business, but, most importantly, how to live with true integrity.