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.

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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.

Stories In My Pocket

Several times per week, I make the trip from my office near one end of my company’s building, down the back utility hall, clear to the other end of the building, a city block’s length, to our shipping department. I often need to ship an object that’s small enough to fit in my shirt pocket, but more valuable to its recipient than anything purchased on Rodeo Drive, all but irreplaceable: A wheelchair component that someone needs to get his or life back in motion, where such a seemingly mundane piece of metal, or plastic, or wire means the difference between passing finals in college or not taking them, enjoying a vacation or being confined to a hotel room, arriving to work on time or getting laid off, or being mobile to join family in the backyard or being stuck in bed – the difference between truly thriving or merely existing.

I’m reminded of the gentleman who flew from Minnesota to Maui, for the honeymoon he and his wife skipped decades before because of the accident that left him a quadriplegic just weeks prior to their original wedding date. As they rolled him off of the airplane in Maui via an aisle chair, approaching his powerchair on the tarmac of paradise in March, he immediately noticed a glaring omission: The goal-post joystick knob that he needed to drive his powerchair was gone. The difference between independence and dependence on the trip of a lifetime came down to a formed piece of plastic that fit in a shirt pocket, that cost less than a couple of Starbuck coffees to get it to the user within 48 hours, restoring his ability to stroll the walks of Kaanapali Beach with his wife for the following 11 days.

Indeed, some stories tell more cinematic than others, but there’s no difference among them, where the woman who can’t use her powerchair in her house because the joystick cable broke by catching on a doorknob isn’t any less impacted by not having a vital wheelchair component than the young lady set to march in the Rose Parade, who’s puppy got a hold of her charger cord, preventing her from charging her powerchair days before the big event. When life is on hold, there’s no hierarchy, just need. Like loosing the key to one’s house, suddenly not having among the most common wheelchair components can strip one of the aspects of life needed the most.

Sometimes I pause for a moment in our shipping department, watching boxes of many shapes and sizes flowing down they conveyor line, knowing that other wheelchair manufacturers serve similar needs, where the cumulative stories are endless, where I wish I could follow each package out the door, to where somewhere in transit, the seemingly mundane parts in boxes transform into invaluable keys that open lives.

Playing The Wheelchair Waiting Game

Here we are racing toward fall, the time of the year when the mobility industry debuts many of the new products for the coming year. For some, this is an exciting time, getting a glimpse of what, ideally, is another step in the evolution of mobility products. However, others view this time of year with great skepticism, unconvinced by any new products, unwilling to venture into so-called unproven realms. Indeed, the consumer debate between old and new is clear: Is a new mobility product something to obtain, delivering increased liberation, or should it be avoided, too much of a risk, possibly compromising one’s mobility with unforeseen issues?

The intent of new products is basic, to provide advantages over existing products. Maybe a new product performs better than previous models? Maybe a new product offers comfort beyond competing models? Maybe a new product offers a more cost-effective package than others? Or, maybe a new product offers all of these advantages over current models, with a cool new aesthetic added, as well. Who wouldn’t want a better performing, more comfortable, less expensive, sharper looking mobility product?

Still, with these many advances may come unknowns. Was the new product adequately tested prior to release to prove out any “bugs?” Is there appropriate manufacturer and dealer support for the new product? And, will the new product interface with aftermarket technology, such as seating, vehicle securement systems, and so on? Most certainly one wouldn’t want to place one’s mobility in an unproven product, with questionable support, and poor integration toward existing technology.

The question then becomes, do the potential rewards of purchasing a newly-introduced mobility product outweigh the potential risks of owning a product with an unknown track record?

To answer this question, one must begin by considering the nature of new products. Rarely is a new product entirely new, as they are usually an evolution of technology, building upon the proven and familiar. Specifically in the mobility market, electronics, for example, have a decades-old lineage, where the latest-and-greatest powerchair or scooter controllers aren’t of a technology that is entirely a technological shift or introduction, but rather an improvement and expansion of existing technology (similar to the evolution of personal computers, where we’ve seen a stepping-stone approach toward improvements, ensuring reliability while still consistently advancing technology). The unknowns, therefore, of new technology may not be as profound as one might believe, containing improvements on existing technology to offer both enhanced performance and reliability.

Similarly, a new model doesn’t usually mean unknown product support, and, as a new model, may actually promise more reliability and better support than prior models. Responsible manufacturers, learn and grow over time, improving processes and skills; in this way, a new model may have more knowledge and talent designed into it, ensuring that any enhancements fostered by previous models are automatically placed into new products – put simply, new products often begin where prior products left off, fostering the best of the best.

With some research and understanding, then, the perceived risks of purchasing a new model may not be a risk at all. In fact, purchasing newly-introduced product may prove more sound than remaining with one’s favorite product, making a great product genre even greater — which is the foremost reason one should purchase a new product, to obtain enhanced levels of mobility beyond the present.

Ultimately, there are few areas of life that are more important than one’s mobility. It is true that there is a sense of security in one’s time-proven mobility product. Nevertheless, with life-enhancing technology always evolving, one shouldn’t let the known mobility of today prevent the pursuit of newly-enhanced mobility tomorrow.

Crazy Talk

When I was six years old, I told my great-grandmother that, more than anything, I wanted new powerchair.

“That’s crazy talk,” she said, standing up from the couch where we both sat, pointing her finger at me. “A little boy should want a bike, not a wheelchair – you shouldn’t want something that you need like a wheelchair.”

While my great-grandmother’s frankness may have been well-meant, it certainly wasn’t accurate in my case, where a new powerchair was number one on my list, ahead of a bike or a room full of toys. What I knew even at that young age was that a new powerchair meant liberation, where improved mobility would take me beyond the present physical limitations of being all but housebound. For me, at that moment, a new powerchair certainly promised the freedom to go outside, away from Great-Granny’s old-world lectures.

As Great-Granny and my parents learned, when it came to my getting a new wheelchair, I was anything but patient, where I tossed and turned at night while waiting the three or four months that it took in those days to get a new powerchair. Time crept by, where I couldn’t think about anything else besides getting my new wheelchair. In school, I’d look out the window at a grassy hill, imagining my new powerchair taking me to the top. At home, I studied the brochure of my forthcoming wheelchair night after night till the pages were crumpled and torn from so much handling. And, during all times in-between, all I thought of was my new wheelchair, envisioning how it would handle in every environment I entered. After all, I wasn’t just getting a new wheelchair; I was hopefully getting a new way of life.

And, I was never disappointed. I remember getting my first powerchair, it taking me across the room like a magic carpet ride. I remember getting my second powerchair that had larger batteries than the first, so that I could stay outside playing longer after school. And, I remember getting my third, fourth, and fifth powerchairs, where painted colors, high-speed motors, and contoured seating propelled me ever farther. With each evolution of technology, each new wheelchair, my life changed, where I could go places previously inaccessible, where I could better interact with my peers in such ways as keeping up with them on their bikes, where the silver-on-black racing stripes and fast speeds made me feel more like a hot-rodder than the only disabled kid in my school. New wheelchairs weren’t simply part of life-long disability, they were tools of inspiration.

Today, I’m touched when a consumer asks me to track the order of his or her new wheelchair, wanting to know when it’s built, when it will ship, when it will arrive at the provider – that is, when it will take him or her across the room like a magic carpet ride. I can feel users’ excitement – I live the excitement – as I, too, can’t wait to see where their new wheelchairs take them.

Motocross

It’s early Sunday morning, and my buddy, Bryan, and I are driving due north, out of Pennsylvania, and into New York, heading for the motocross national races. I’ve never been in this part of New York, and the still-green, late summer foliage along this country highway reminds me of the California foothills in the spring, which turn wheat brown by this time of year. The sky is translucent blue, a striking contrast to the pouring Northeast rains of yesterday. I’m no expert, but I suspect this is good motocross weather – sun without dust.

As we get within a mile of the race track – transformed grazing land in the seeming middle of nowhere – there’s a policeman directing bumper-to-bumper traffic on the two-lane straightaway. Bryan rolls down the window, and asks the cop for handicapped parking. But, the cop says there isn’t any, and I suggest to Bryan that we keep driving to the next cop that I see at another entrance, a ways down the road. My never-take-no-for-an-answer policy pays off, and the second cop steers us toward parking in Pit Row, among the diesels that haul the race teams and their gear.

Bryan and I unload from my van, and head up toward the track, a bulldozed haven for motocross racers and spectators alike. The size of the venue is awesome, with herds of vendors and stampedes of fans making nature all but obsolete – a traveling carnival at its best, a metropolis constructed overnight.

I’m wide-eyed, both at the grandness of the event and from the excitement of witnessing the sport in person. When you watch motocross racing on television, you see guys on motorcycles riding through dirt, throwing in a jump here and there, and round and round they go. But, in person, the scale is awe-inspiring, with riders defying gravity, roaring at 60mph up and down hills as steep as the most extreme ski slopes, flying several stories in the air, and bathing in eye-blinding mud – it’s like a real life video game. And, for me, the video game analogy plays itself, too, with my powerchair churning in mud as we make our way up the pedestrian paths intertwined with the track, strategically choosing my course amidst the crowd.

My chair’s in good shape, though. I have the widest possible knobbies on the back of my chair, and the biggest balloon casters on the front – a powerchair that I especially configured to run through muck and mire. Every once in a while, I encounter a deep patch of mud, and my wheels spin, but just when I’m about to ask Bryan for a push or tug, I make it through. I am, however, concerned that if the mud doesn’t dry up and clear from my tires by the end of the day, my wife will have my head for tracking mud into our van and house. Nevertheless, as I weave through the increasing crowd of late-morning motocross fans, noting an exceptional mix of busty, scantily-clad motocross babes crossing my sight – eye-to-chest level – I’m less concerned about my muddy tires or homeward fait. Motocross babes are the best, I tell Bryan as I ogle the countless hot chicks on the arms of their bleached-haired, baggy-pants boyfriends.

Bryan and I watch a few amateur races from the infield, then decide to scope out a better spot for the heats of professional racers coming up next. We wind our way back through the muddy paths, past the T-shirt stands and tobacco tents, ending up by the starting line. As the pro’s line up, revving their engines, I scan the 5-person-thick crowd lining the course, and spot amongst them a fence post with handicapped sign and arrow pointing down a narrow, gravel path. I motion for Bryan to follow my lead over the roar of the race bikes, and we end up in a secured area with bleachers, overlooking a prime part of the course, where the racers fly down the hill, straight toward us, bank a turn, jump a double, hit the whoopies, and blast back up the hill. Maybe a wheelchair isn’t always the best seat, but in these instances, it is, guaranteeing a front-row spot. If I could throw a rock, I could probably hit the racers in their helmets as they race by.

With an open throttle and pop of the clutch, the pros shoot out of the starting gate, and crank around the first turn. Just then, I notice two powerchairs and a titanium ultralight chair at the other end of the bleachers – all of the wheelchairs are shiny and spotless, void of the mud and mire that coats my chair. Somehow the other wheelers traveled the same terrain as me, but stayed clean. I look back to the track, and the pro’s are flying down the hill like a swarm of bees, traveling seemingly twice as fast as the previous amateurs who rode the same course, with the same motorcycle technology. I look back at the spotless wheelchairs, then down at my mud-baked tires, then back to the pro’s flying the course – and think, it must be true that it’s not what you ride, but how you ride it.