Mobility Empathy

By Mark E. Smith

I asked a buddy of mine how he like his accessible van dealer, and he gave me an unforgettable answer: “They remind me of my wheelchair dealer. Every time I go to either one, even though they’re surrounded by equipment needing immediate service, it’s like they’re just sitting around playing cards on a Tuesday afternoon.”

While there are many terrific mobility providers, my buddy is on to a reality about some providers that runs deeper than most realize. After all, one would think that with wheelchairs so critical to consumers’ lives, providers would scramble to get each job done as quickly as possible. So, then why do some providers seem so sluggish – that is, seemingly playing cards on a Tuesday afternoon while you’re stuck in bed waiting for your wheelchair?

For those types of providers, the answer is quite blunt: They simply don’t recognize the critical role of wheelchairs in our lives. See, I don’t think that sluggish providers merely lack professionalism. Rather, I believe that sluggish providers lack a far more crucial trait: Empathy.

As one who’s used a wheelchair my entirely life, nothing has proven more alarming to me than when my wheelchair has failed – that is, whenever it wouldn’t turn on, or an error code appeared, or the batteries suddenly died. The realization that my life had just come to a halt, that I was entirely helpless, and that my independence was gone always ushered in my most disconcerting emotions. For those who don’t have a disability, I explain the feeling of a suddenly-dead wheelchair as like that of being in the middle of a Nevada desert, countless miles from a town, on an unpopulated road, in 110-degree heat, with no cell phone, and your car simply dies in its tracks – now what do you do?

I didn’t grow-up in the greatest of families, where I experienced and dealt with some very harrowing experiences. But, none ever placed the sick feeling in my stomach like when my wheelchair simply stopped working. Why is it that I could handle a volatile home life with seeming nerves of steel, but the minute that my wheelchair wouldn’t turn on, my heart raced and I felt alarmed?

Because the entirety of my life has depended upon my mobility – it’s that simple. Even as an adolescent, I knew that as long as I could move via my wheelchair, I could handle anything. If Mom was having one of “those kinds of nights,” I could roll to the phone and call for help. If I needed to get to the store to buy my little sister and me food, I could do it. And, most importantly, I could get myself to high school each morning, no matter what went on at home. As long as my power wheelchair worked, I had control in my life.

However, the minute that my wheelchair died, I was helpless and vulnerable. My sense of control was gone, all abilities lost. I felt my pulse quicken, the blood seemingly rush from my head, thinking to myself, Please, Lord, not now….

And, I can never forget that feeling, never shake it. I can’t help but wonder, then, if the career path that I chose in working with mobility products – and, more importantly, toward serving my fellow users – had something to do with my subconsciously wishing to control the one aspect of my life that I never felt completely in control of: My mobility?

Of course it did. In fact, in not only wanting to avoid feeling that raw pit in my stomach for myself by preventing my own mobility issues, I’ve built a life that strives toward ideally helping others avoid that feeling. I take it personally when I learn of anyone, anywhere, with any wheelchair that has an issue. In fact, the pit in my stomach is rawer than ever, where I feel my gut wrench every time I see a message board post, receive an email, or get a phone call that someone’s wheelchair isn’t working, where I recognize that one’s life may have just come to a screeching halt without mobility – and it resonates within me, where I just want to help. I suppose that my experience is a lot like the fact that recovered drug addicts make the best recovery counselors because they see themselves in their clients, knowing their struggles first hand, with absolute empathy for what others are experiencing.

And, that’s what I think some providers lack – that is, the empathetic reaction to mobility issues that’s needed to truly pour oneself into one’s work. Sure, some providers are terrific, while others are downright terrible. But, there are some in-between who aren’t bad people, they just don’t get it – they don’t recognize that one’s life can come to a halt when one’s wheelchair isn’t working – and it hurts their business and harms consumers.

What can a consumer do, though, to help a provider have some semblance of empathy? In my experience, simply trying to make a real connection with such providers – saying, I’m going to be stuck in bed until you get my chair fixed. I’m sure you can imagine what it would be like to be stuck in bed for a week, so I trust you’ll do whatever you can to get my chair back to me in a day or two… – is worth a try. Providers don’t always register the importance of a wheelchair in one’s life, but sometimes when we sincerely, patiently try to explain it to them, it works wonders.

No, one doesn’t have to have a disability or first-hand knowledge of what it’s like to be stranded by a dead wheelchair to be a great provider. However, having empathy – as in realizing how one would feel if stranded in the Nevada desert by a broken-down car – certainly wouldn’t hurt. See, empathy doesn’t have to come from an identical experience; rather, empathy comes from simply appreciating the plight of others, and sincerely striving to be of assistance.

It Gets You There

By Mark E. Smith

We’re heading toward the end of another school year, and college graduates across this great country are asking themselves the same question: I have my degree – now what do I do?

For some graduates, it’s a question of not knowing where to start on their career path, while others may know precisely what they want to achieve, needing to merely choose from several terrific opportunities. All graduates, however, share a common position at the moment of graduation: They possess the tools and promise needed to achieve a remarkable future if they pursue it.

Wheelchairs, likewise, serve as empowered tools of promise in our lives. A wheelchair acts as a key that can unlock one’s future, a vehicle that gives one access to opportunity, a rolling degree of sorts that affords one the ability to achieve a remarkable future if one wishes to pursue it.

And, yet, it forever amazes me that more people don’t realize the promise that their wheelchairs offer, that some choose to view their wheelchairs as reasons why they can’t pursue many aspects of life:

“I’m not even bothering to look for a job because I know that no one will hire someone who uses a wheelchair like me.”

“I could never join the church choir – my wheelchair would make me stick out too much.”

“I couldn’t imagine being a parent – I could never handle a baby from my wheelchair.”

These are the thoughts that some have. And, here’s a reality check: Such negative outlooks toward using a wheelchair are not only self-serving – after all, if one follows such thinking, one never has to make any effort in life – but, they’re also entirely self-defeating, preventing any opportunities for success.

What some don’t realize is that a wheelchair actually removes many of our limitations – and, ultimately, excuses – making us increasingly accountable for our successes and failures. And, that’s an empowering realization, in that a wheelchair fosters an undeniable sense of self-determination in our lives, that if we can dream it – and are willing to apply ourselves – our wheelchairs are prepared to take us as far as we seek.

Truly, a wheelchair remarkably removes the foremost obstacle in our life – the lack of mobility – granting us an incredible level of opportunity for our taking in education, employment, community involvement, and relationships. But, like a graduate with a degree, it’s up to us to make the most of our wheelchairs, to answer the question, what will I do with it?

Sure, despite the opportunity that our wheelchairs create, there are still other obstacles in our lives. For example, social stigmas remain, where some will put up road blocks for us based on their own skewed, negative perceptions about wheelchairs and disability. Yet, a wheelchair even goes as far as freeing us from many of those seeming limitations, as well, by allowing us to continually seek new opportunities when others don’t workout.

And, that’s the astounding nature of a wheelchair: It allows us to consistently seek new opportunities, to literally roll up to doors and knock. And, if someone closes the door on us – and some will, no matter our qualifications or tact – that same wheelchair will take us to fifty more doors, finding those that open. In this way, a wheelchair is an amazing tool of promise and opportunity, one that should inspire us to rid our excuses, push our boundaries, and grow our lives, propelling us full-speed toward education, employment, community involvement, and relationships.

I’m reminded of a conversation that I had after I spoke at a conference recently, where a young woman came up to me and explained that, in using her wheelchair, she’d never have such courage to roll onto stage, that she was inspired not only by the messages of my talk, but by my confidence to simply get up in front of 300 people and perform.

With a mischievous smile, I teased her that I had no intention of giving the keynote address that day, but that I was simply in the habit of following wheelchair ramps – and when I followed the ramp located on the left of the banquet room, I unwittingly landed on stage, with no choice but to just start talking!

In actuality, there’s a lot of truth to that tale, where I do believe in simply pursuing the ramps – read that, opportunities – placed before me. If my wheelchair will get me there, I believe that I have an obligation to myself, my family, and my community to live up to the promise that it presents, following my opportunities as far as I can – that is, my wheelchair removes many reasons and excuses why I shouldn’t pursue making a difference in the world to my fullest potential.

I know, contrary to my view, it’s a lot easier to look at our wheelchairs as reasons why we can’t succeed. In fact, it takes no effort at all. What’s more, we can even find support for such a self-defeating position, where if we tell people that we are disabled, that we use a wheelchair, many will buy into outdated cultural stereotypes about those with disabilities, allowing us to use our wheelchairs as 1,001 reasons why we can’t do this or that, why we can’t succeed. Indeed, doing little with our wheelchairs – with our lives – is so easy to justify.

But, the minute that we solve the equation properly, understanding that a wheelchair isn’t a variable, but a solution, we begin succeeding in the course of life. Like a college degree, our wheelchairs then become tools of empowerment and promises, allowing us to approach doors of opportunity, where it’s solely up to us to decide whether we’re willing to apply the desire, courage, and tenacity to knock on them. And, it’s when we make the choice – the commitment – to go as far as our wheelchairs will take us, even when we have to stretch our comfort zones and capabilities, that we find remarkable successes in life.

In this way, every morning, when I awake, I glance to my right, consciously noting that my power wheelchair is sitting beside my bed. And, that glance at my power wheelchair is my affirmation that, with the new day, I have the ability to follow my opportunities without excuses, where success isn’t limited by my disability, but pursued by my will.

No, my life with disability isn’t easy, and neither is yours – there are factors everyday that knock us down and slow us down. However, if we’re to be successful, we must understand that using wheelchair isn’t one of those limiting factors, that a wheelchair simply, faithfully moves us forward.

When you awake tomorrow morning, glance over at your wheelchair, realizing that it removes many reasons and excuses from your life as to why you can’t achieve greater success, and make the commitment to live up to its promise and opportunity by getting out in the world, pushing your boundaries, growing your life, propelling forward to make more of a difference in the lives of those around you. After all, your wheelchair will allow you to take your life as far as you wish, turning excuses into determination, and dreams into achievements – that is, your wheelchair proves your truest partner for success.

Removing the Mobility Ruts from Our Roads

By Mark E. Smith

Have you ever wondered how NASCAR drivers maneuver their cars with such precision at such death-defying speeds, slipping between each other, inches apart, at 190 MPH?

It turns out that in their professional training as drivers, NASCAR racers are taught a vital psychological skill: When driving a race car, only focus on where you want to go, blocking out everything else from your mind.

Now, if you realize how you, yourself, think when you’re driving a car, you likely take the opposite approach, telling yourself, “Watch out for that pothole,” or “Don’t sideswipe that guardrail!”

Put simply, professional race car drivers focus on the positives in front of them, while everyday drivers typically focus on the negatives.

Of course, we don’t need to be race car drivers or psychologists to realize that what we focus on plays a major role in our success in any situation. If we focus on the positives, the successes that we seek are more likely to occur, and, conversely, if we focus on the negatives, we diminish our odds of success. In other words, if we focus on the smooth road ahead, that’s where we will go, and if we see nothing but potholes, surely we destine ourselves to a bumpy ride.

I’m amazed by those with disabilities who take a bleak outlook toward their mobility products, only seeing the negatives, where they’ll tell you that since the day that the began using wheelchairs, their lives have been nothing but potholes. “Every provider is a jerk, wheelchairs stink, and it’s all part of a system out to get me,” we hear people say.

Along these lines, I ran across someone recently who remained upset about an experience that he had five years ago, where he explained to me that his provider had done him wrong. No, I wasn’t involved in the situation, and I have no way of knowing the whole story, but clearly the man was upset, even after all of these years.

As one who always looks in a positive, forward direction, I asked the man if he had a sound wheelchair now, and if he had a good provider? “Yes I do,” he told me. “But, that doesn’t matter. At any moment this chair’s going to break, and my provider is going to stick it to me.”

On the road of life, the gentleman was doing nothing but looking for those darn potholes. He was so bitter about what had once happened, that he simply refused to trust a provider or wheelchair ever again, unable to appreciate the mobility and support that he now has.

Sure, you might be thinking to yourself, “See, Mark, poor provider experiences ruin our lives.”

Yet, I ask you, does a bad provider experience or an unreliable wheelchair truly have the ability to ruin our lives, to make us forever bitter, to despise every moment that we spend in a wheelchair?

Only if we let it.

I didn’t choose my disability – or the fact that I have to use a wheelchair – but I sure as heck can choose the attitude that I use toward dealing with it. And, I can tell you that bitterness and disdain never got me anywhere, not in life, nor with mobility. Heck, if I were to follow the lead of some with chips on their shoulders about wheelchairs, I wouldn’t be where I am today. I mean, I was a kid stuck in bed, who couldn’t go outside, who missed school because my wheelchairs were so poorly made and the industry was so unregulated when I was growing up.

But, I never got discouraged, I never wrote off the world and focused only on the potholes in my path. Rather, I realized that there were still great people who were a help, not a hindrance – as with those who ultimately repaired my wheelchairs. I realized that wheelchairs were a liberator, not a restriction – as they allowed me to pursue my passions in life. And, most importantly, I realized that when I simply focused on the positives of my mobility, my life became better than I ever dreamed.

Surely, disability experience proves a difficult emotional struggle for many, and issues with our wheelchairs and providers can prove painfully distressing at times. But, holding onto that distress does nothing but hold us back. At some point, we have to stop viewing our wheelchair issues as lifelong afflictions, and regard them as what they are, temporary situations. We mustn’t ask ourselves, ”When will my wheelchair break again?” or think, “I need a new wheelchair – here I go again dealing with nightmare providers.” Instead, must wake up everyday looking forward to where our wheelchairs will take us, how they will allow each and every one of us to fulfill our purposes in life.

No, I can’t guarantee you that your wheelchair will never break down – they’re physical products, and issues occur. Similarly, I can’t guarantee you that you’ll never have problems with your provider – they’re real people, where some have real problems.

However, what I can guarantee you is that your perspective ultimately rules every aspect of your life, including your mobility. While we all face the ebbs and flows of life, with low points occurring – as with issues with our wheelchairs or providers – we must remind ourselves of the old adage that these times, too, shall pass, and refuse to allow temporary situations to become permanent afflictions.

Be confident in the smooth road ahead for you by banning bitterness, trusting in the goodness of people, and believing in the awesome power of mobility to foster your life on a superhighway of success.

People First, Then Wheelchairs

 

By Mark E. Smith 

What if I told you that even the most liberating wheelchairs have virtually nothing to do with technology? You might very well think that I’d lost my mind, namely since with all of the aerospace materials and advanced electronics used today, surely wheelchairs are technology-based.

However, I ask you to hold off judging my sanity for one moment, and consider one all-important question: If the most liberating wheelchairs have little to do with technology, what do they have to do with? 

In a word, people. It’s interesting how as users, providers, and manufacturers, we can get so wrapped up in the fundamentals of wheelchair technology that, at times, some forget that wheelchairs are less about technology, and more about people and the lives that they lead. I mean, surely we have to look at wheelchairs as high-tech solutions that empower our lives.However, in the purest form, a wheelchair isn’t about its technology; rather, it’s about the person who uses it. After all, you can have the most advanced wheelchair in the world, but if it doesn’t fit your lifestyle, it’s a moot point.

I recently had the pleasure of meeting with a family who was in the process of selecting a new power wheelchair for their daughter. As it turned out, the daughter was exactly my own daughter’s age, ten. While their daughter had spina bifida, she of course had everything in common with my own daughter – Webkinz collecting, adoring Hannah Montana, obsessing over Lip Smackers fruity lip balm, and all of the other subjects that ten-year-old girls are into these days.

Now, while it would have been easy to jump right in and speak with the family about typical power wheelchair specs – seating, speed, the differences between models, and such – we spoke very little of it to begin with. What we did discuss was how the daughter liked to play tetherball during gym at school, how she participates in a Girl Scouts troop, and how she spends a lot of time at her grandparents’ home. Surely, these topics may seem a bit off from the conversation of selecting a new power wheelchair; however, they were as important to the selection process as any other technical specifications – and, arguably, more so.

The fact is, the most important role of the young lady’s new wheelchair would be to allow her to live to her fullest, to be as independent and active as possible in every aspect of life sought. In this way, selecting a new wheelchair wasn’t about selecting a device; rather, it was about serving her needs – that is, playing tetherball, volunteering in her community with her Girl Scouts troop, or bopping out at the Hanna Montana concert. Put simply, a new power wheelchair had to be about her needs, wishes, and wants, not merely four wheels and a seat or the latest-greatest technology.

I heard from the family last week, and they expressed how much the young lady is now enjoying her new power wheelchair. The power elevating seat allows her to be at the height of the other kids when playing tetherball; the large batteries allow her to go from school to her Girl Scouts meeting without worrying about range; and, the ultra-compact power base allows her to maneuver all but effortlessly in her grandparents’ small home. As it turned out, a wheelchair was successfully chosen that allows her to be her in every sense.

Of course, wheelchairs have everything to do with technology, where advancements have dramatically improved our mobility. However, above all else, wheelchairs have to do with people, where selection and use is about one’s individual lifestyle, not sterile technology.

No matter if you’re a wheelchair user, provider, or manufacturer, it’s vital to remind yourself from time to time of the foremost rule toward mobility products: People first, then wheelchairs. 

Pondering Wheelchair Prestige

Name almost any topic – politics, sports, religion, education, cars, pets – and people argue over it, talkin’ trash, as the hip kids say, about whose perspective is more valid.

But, who would think that such heated discussions would occur regarding wheelchairs? After all, the fact is, few items in mainstream culture are as seemingly sterile, void of any prestige to the masses, as a wheelchair, where able-bodied folks rarely note the exact model of wheelchair that you use, and none would ever challenge your personal taste in wheelchairs, as in, “Dude, what’s up with that hooptie – get a better chair, bro!”

Yet, people in the wheelchair community sometimes do just that – that is, challenge others on the validity of the types of wheelchairs that they use, or mock their brand loyalty, talking smack. And, such contention over wheelchairs is ridiculous, if not harmful to disability culture at large.

On Internet message boards, you’ll occasionally see claims where one person says that their wheelchair will out perform others, and the bantering gets going. And, in real life, you’ll hear users, providers, and reps dishing innuendos and spite toward other wheelchairs and brands to make their personal product preferences seem more valid. “Why’d you pick that chair – don’t you know that it’s just going to break?” is along the lines we sometimes hear.

But, among the worst I’ve encountered lately was at an event where I heard one user ask another user, “What, did you steal that piece of crap wheelchair from a nursing home?” diminishing the user’s lower-end wheelchair. As funny as that line seems, the guy who served it was serious and biting with its delivery, talking down to the other user, hassling him because he didn’t have the latest-greatest gig on wheels.

At some point there has to be a reality check that a wheelchair is ultimately a tool of necessity, not an item of bravado – that is, the one with the biggest, baddest wheelchair doesn’t win an award in the official I Can’t Walk Club.

What’s more, in the world at large, a particular type of wheelchair doesn’t socially distinguish one wheelchair user from another, either. Most folks in the mainstream aren’t judging us based on the brand and model of wheelchair we have – they don’t even know what makes one wheelchair different from the next. In fact, ask a guy in line at Walmart if he knows what a Quickie is, and he’ll give you an answer that will surely make his wife next to him blush, but it won’t have anything to do with wheelchairs!

Sure, a “cool looking” wheelchair will get comments from some – and that’s a great, inclusive sentiment. Yet, in whole, you have a disability, I have a disability, and others in the mainstream simply don’t see our actual wheelchairs as a distinguishing charachteristic among us. Put simply, those in the mainstream acknowledge that we use wheelchairs, but beyond occasionally noticing eye catching paint or upholstery, they make no distinctions between one wheelchair model and the next – the exact model of wheelchair we use is of virtually no significance to them.

But, some in our community do use their wheel chairs as bravado, a prestige symbol that they believe differentiates them from other wheelchair users. Why is that?

Well, we live in a materialistic society, where we often believe that what we have is what we represent, all of which supposedly defines who we are – from the cars we drive, to the clothes we wear, to the homes we live in. And, wheelchair users aren’t exempt from this cultural force, with some putting an overtly materialistic emphasis on their wheelchairs. And, within reason, that’s a healthy, empowered outlook, where one is proud of one’s wheelchair, just like pride in one’s other posessions.

Yet, the problem comes in when some with disabilities take “wheelchair prestige” too far, viewing one’s wheelchair as a true status symbol, believing that the quality of one’s wheelchair socially elevates them above others. I suspect that this outlook stems not from disability experience, but from personal values, where such individuals place an oversignifigance on all of their belongings, not just their wheelchairs – that is, you’ll hear them bragging about everything they own, not just their wheelchairs.

However, is it really rational to think that a cool wheelchair makes one person somehow better than others?

Of course not. Again, wheelchair use isn’t a choice, it’s a necessity, and anyone who skews it into a perceived status competition is missing the point entirely – of wheelchairs and life. We should ebrace our wheelchairs as a realistic part of our lives, and appreciate them for the liberation that they provide. But, we shouldn’t make them divisive objects of materialism between us – no one is better than another based on the type of wheelchair used. To the contrary, relying on wheelchairs for mobility should be a common experience that brings us together with shared understanding and camaraderie.

Esteem in one’s wheelchair is a positive force. Like crisp clothes, when we like what we see in the mirror, we feel better about ourselves – and, a cool wheelchair can make us feel better about ourselves, as it’s such an intimate extension of one’s body. But, let’s not be fooled into thinking that any caliber of wheelchair can truly define class distinctions among us – we’re all in the wheelchair world together. In this way, when we see other wheelchair users, we shouldn’t judge them by their wheelchairs’ characteristics, but by their true characters, where wheelchairs don’t distinguish us, but unite us.

Propelling Change

The only constant in life is change. We’re born, we die, and in-between we age and we learn, we get jobs and we switch jobs, we find loves and lose loves, we succeed, we fail, and we grow. But, the foremost factor toward our successes in life, no matter who we are, is how well we accept, embrace, and foster change. Change is inevitable toward progress, and if we want to succeed, moving our lives forward, we must act upon change, not try to deny it.

I’m perplexed by those who avoid change in their mobility products, where in 2007, some still use wheelchairs from 1967 – not due to funding issues, but solely due to a personal reluctance to adopt modern mobility technology. After all, how is it logical that people choose to continue using 40-year-old wheelchairs when there have been such marked improvements in mobility technology over the decades?

I’ve recently ask several such users that very question, and they all had answers along the same lines: “It works for me, so why make a change?”

If one applied that logic to all other areas of life, one would never achieve any progress. A high school diploma works, but pursuing an advanced college degree certainly provides more career options and greater income. A marriage of convenience works, but one of passion and shared interests certainly inspires one’s life. Put simply, just because something works doesn’t make it the best alternative, and pursuing change is part of improving our lives.

And, that’s my answer to the question of, “Why change my old wheelchair if it works for me?” — that is, just because a decades-old wheelchair works doesn’t mean that it’s the best mobility solution.

In fact, in many cases, using an outdated wheelchair is the worst mobility solution, detracting from one’s life, just as potentially stifling as avoiding changes in our careers and relationships. It’s entirely possible that an outdated, 50-pound, steel manual wheelchair literally holds one back, where moving to a modern, 30-pound, aluminum wheelchair could literally moves one’s life forward through enhanced propulsion efficiency and increased transportability.

Another argument people make about not wanting a modern wheelchair is that a new one won’t fit as well as one of twenty-something years. And, to a point, they are correct – after all new shoes never fit like old ones. However, a skilled wheelchair specialist and manufacturer can replicate almost any seating and positioning needs, where even if one doesn’t want any changes to positioning, newer, more liberating wheelchair technology can still be worked in conjunction with existing preferences.

On this topic, I had the pleasure of meeting a gentleman at MedTrade this year. He explained to me that he’d always used E&J’s circa 1970 one-arm-drive manual wheelchair because it better met his needs than newer wheelchairs, that they didn’t steer or fold as well as his old, trusty E&J model.

Still, he eventually recognized that he was almost certainly missing out on modern technology, that a lighter, more efficient manual wheelchair would likely allow him greater mobility. From that realization, rather than holding on to what he new simply worked for him – the old, steel E&J – he had a current manufacturer custom integrate his existing E&J one-arm-drive mechanism into a new titanium wheelchair model. The result, he shared with me, has been profound, where his mobility is so enhanced by an ultralight wheelchair that he wished that he’d made the switch in the 1980s, rather than in the 21st century – that is, he wished he’d pursued change sooner.

Nevertheless, despite the countless examples of lives that I’ve seen positively changed by consumers who moved from decades-old wheelchairs to modern technology, some might say that it’s none of my concern if one prefers a trusty, old wheelchair over a newer one.

And, they’re right. We live in a fabulously free country, and just as no one has the right to tell another how to live life, no one has a right to dictate what type of mobility one uses.

But, as an individual with a disability, and in my consumer-focused roles, I recognize the remarkable liberator that enhanced mobility plays in our lives, where I know that, for example, a decades-old, 50-pound manual wheelchair can be replaced with 30-pound modern wheelchair, and dramatically change one’s life for the better. One can’t fault another for simply wishing everyone to have utmost mobility, especially when the advantages of modern mobility technology as a whole are indisputable.

Surely, comfort with the wheelchairs that we know and use offers utmost security – and, there’s merit to the notion of not fixing what isn’t broken. However, just because a product works for someone doesn’t mean that it’s the best solution, namely when dramatic advancements in technology have occurred. The fact is, wheelchair technology has improved dramatically over the decades, especially in the past twenty-five years, and it’s improved many of our lives.

What I ask is, the next time that you encounter someone stubbornly using a decades-old wheelchair, take a moment to find out why, maybe let them know how a modern wheelchair has improved your life, and how it could likely improve his or hers. No, we don’t want to drag anyone toward change against his or her will; however, getting them at least rolling in the right direction is a meaningful attempt toward fostering the mobility of others.

When Wheelchairs Can’t Buy Happiness

You’ve likely heard the expression, “Money can’t buy happiness.”  However, have you ever heard the expression, “Wheelchairs can’t buy happiness?”

 

Surely, you’ve never heard the expression related to wheelchairs, but such an expression is increasingly true among those of us with disabilities, which can prove both inspiring and defeating all at once.

Undoubtedly, wheelchair culture continues culminating, where wheelchair design aesthetics play an ever-increasing role in consumers’ lives, where having the latest-greatest wheelchair model has utmost importance for a growing number of those with disabilities. 

Toward the positive, where wheelchairs were once a sole device of necessity, something dreaded by many, wheelchairs have now assumed aspects that are objects of desire, where cool colors and cutting-edge components are enthusiastically sought – a transformation that undoubtedly changes lives for the better.  And, this trend transcends wheelchairs, liberating many other aspects of disability in that when we feel better about our wheelchairs, we feel better about other aspects of our lives.

However, in this era where wheelchairs are increasingly seen as objects of some prestige, I’ve also witnessed a downside:  The emotional drain of “chasing the next best thing.”

There’s no question that products are finding their way to market in an increasing number, at a faster pace than ever before.  Twenty-five years ago, there were around 5 powerchair models readily available on the U.S. market.  Today, there are close to 100, with countless configurations and options.  And, the models keep advancing, resulting in better and better products.

In today’s market, when one buys a wheelchair, there’s certain to be a newer model or enhanced features shortly to come tomorrow.  For most users, this market reality is of no consequence, as they are happy with the wheelchairs that they have, knowing that as time passes, new products will come and go, and they’re enjoying the liberation that their existing wheelchairs provide.

Yet, some wheelchair users, like other mainstream consumers, are emotionally captured by the thought of not possessing the latest-greatest wheelchair, especially when they see others getting one – that is, they are suddenly disappointed by their existing wheelchairs, dwelling on wanting the new, latest-greatest one.

And, here’s where the troubling aspect of “wheelchair prestige” truly shows itself in this trend:  Dwelling on having the latest-greatest wheelchair is as self-defeating as dwelling on possessing the latest-greatest of any product – it’s an emotional chase that ultimately proves pointless.

Now, I’ll be the first to say that few aspects in our lives are more important than our wheelchairs — and innovations in wheelchairs have changed our lives.  However, wanting a new wheelchair simply to have the latest-greatest version rarely proves life changing.  Will moving up to newer electronics or a newer frame style offer slightly better performance, convenience, or function over one’s current wheelchair that’s, say, seven months old?  Maybe.  But, will it truly change one’s life?

Usually not.  Surely, tilt seating for pressure sores or upgrading from one class of wheelchair to another, for example, can change one’s life.  But, that’s not what we’re discussing.  Rather, what we’re discussing is wanting the latest-greatest model or features simply to have the latest-greatest – not out of necessity, but desire.  And, in that way, one’s life won’t change.  After all, chasing the latest-greatest of any product does not bring sustained happiness or liberation.  The latest-greatest car, computer, or wheelchair may distract one’s attention away from other aspects of life for a while, creating a false sense of happiness in its obtainment, but once the latest-greatest model or feature is topped by another, the quest starts all over – one can’t find sustained contentment by always seeking external sources of promised contentment.

Still, the reasons why some wheelchair consumers get caught in this cycle, however, can’t be dismissed as flawed consumerism or dysfunctional emotional pacification through buying – it’s a much deeper issue. 

Wheelchairs are intrinsically a foremost tool of promise and liberation – they literally mobilize our lives.  At the same time, they can also prove a focus of limitations, where they can’t always take us everywhere we wish, physically or emotionally.  The cumulative result is that one can view a wheelchair from a very seductive perspective:  If only my wheelchair was a little better, my life would be better – I could go farther, faster, easier, looking cooler.

At some point, though, that outlook becomes defeating, unable to deliver its promise.  Yes, it’s great to have esteem and passion about one’s wheelchair, and even want the coolest one ever.  However, we can’t hinge all of our hopes and frustrations on our wheelchairs, thinking that if we somehow just obtain the latest-greatest one, we will somehow find sustained fulfillment and liberation in life.  Unfortunately, contentment over disability isn’t so easily obtained. 

Great wheelchairs liberate and inspire us, captivating us with their coolness, proving a positive force in our lives.  However, dwelling on having the latest-greatest wheelchair – believing that if we can only obtain the newest model or features, our lives will change – proves an ultimately unfulfilling quest.  In this way, successful mobility doesn’t come from dwelling on possessing the latest-greatest products in hopes that they will fill a void.  Rather, successful mobility comes from allowing our current wheelchairs to assuredly foster the quality of our lives day after day.

Count On Composure

I’m raising my daughter with a foremost principle that I trust will serve her well: Always treat others with respect, kindness, understanding, and composure – even when others don’t treat her with the same accord – and she’ll go far in life. No, it won’t always be easy, but it will prove successful.

As one with a disability and in my public roles, my striving to live that principle by example has proved a key component to my own successes. From rude airline agents to angry customers to people publicly criticizing me, I approach all others with respect, kindness, and understanding, believing that no matter how others behave, it’s no reason for me to respond poorly, that under all circumstances I should offer others the levels of respect and kindness that I wish. As my mother said when I was growing up, two wrongs don’t make a right, you attract more bees with honey than with vinegar, and an eye for an eye only results in two blind men.

Unfortunately, we don’t live in such a consistently forgiving world. Many people do believe in an eye for an eye, where you reap what you sow, where they’re glad to throw the ball back at you even harder than you threw it at them, not calming situations, but exacerbating them. And, that goes for the wheelchair world, as well.

It amazes me how many wheelchair consumers believe that screaming at their providers will help resolve their wheelchair issues. Are wheelchair issues frustrating? Sure. Can providers act like uncaring, unprofessional jerks? Absolutely. Yet, the fact is, treating others rudely – even people who seemingly deserve it based on their own attitudes – makes situations worse, not better, including when it comes to wheelchair service.

Sure, when you’re frustrated – your chair’s in the shop, and your provider’s not returning your calls – complaining, threatening, and yelling seems like a natural reaction. After all, doesn’t complaining, threatening, and yelling get a provider’s attention? Of course it does. But, does it get results?

Usually not. If the provider is ethical and inspired, he’s likely doing the best he can in working with your chair, and treating him with complaints, threats, and yelling isn’t going to speed up the process. In fact, such antagonism will likely slow down the repair, as the time that could be spent fixing your chair may be directed toward having to address your upsetting phone calls and emails.

Likewise, complaining, threatening, and yelling at an inattentive, jerk provider can also do nothing more than make the situation worse. Even jerks don’t like jerks, and just like angering a rogue airline agent can result in your luggage being rerouted to Timbuktu when you’re flying to Orlando, antagonizing an already less-than-ideal provider might cause your wheelchair to end up at the end of the repair line. No, it’s not ethical, but neither is raising heck with your provider – and when two poor attitudes collide, an eye for an eye can ensue.

Fortunately, composure proves beneficial in almost all circumstances – that is, the principal that I strive to live and instill in my daughter, that addressing others with respect will bring positive results. Just as jerks will prove vindictive to other jerks, jerks will almost always respond positively, at least in small ways, to respect and kindness extended to them. No, being nice in a frustrating, combative situation isn’t easy, but it is fruitful – and it’s the surest way to positive results.

Now, some might say, “Mark, my provider is already an unconcerned jerk, and I have nothing to lose by treating him as poorly as he treats me – I’m going to show that jerk what it’s like to deal with a real jerk, me!”

Again, there’s no value in that position – there’s no opportunity for progress. The opportunity for progress is in getting your provider on your side, where he helps you because it’s the ethical, professional, understanding role to serve. And, sometimes, like it or not, it’s up to you to set the example, to set the standard – it’s up to you to demonstrate that respect deserves respect.

Certainly, treating everyone, including providers, with respect, kindness, dignity, and composure isn’t always easy, and doesn’t always guarantee the positive relations that we seek. However, as a whole, composure will succeed over complaining, especially when it comes to wheelchair service. The next time you find yourself ready to blow steam at your provider, remember that while anger is easy to vent, it’s not so easy to live with, where it can harm your mobility. Save yourself some grief in dealing with your provider by maintaining composure, and see if respect, kindness, and understanding foster progress in the situation.

The Color Of Mobility

In the selection of a new wheelchair, there are dozens of choices, ranging from the model wished, all the way down to the type of footplates, with a myriad of choices in-between. But, there’s one choice that consumers overwhelmingly see as especially important: Color.

One would think that comfort and functionality would prove key decisions in wheelchair selection, aspects that certainly are important to one’s mobility. However, color selection is an aspect that many users debate the most – sometimes for weeks – before ordering a new wheelchair. In fact, I’ve known users who selected one model over another simply based on a particular color offered. Surely, some might view placing such importance on color as trivial. But, in my experience, placing utmost importance on color makes entire sense, and literally enhances one’s mobility.

If you think about it, color is one of the few true choices that we have toward our wheelchairs. Sure, we pick the model, seat size, armrest style, and such, but those really aren’t choices – they’re just variations of must-have items that are dictated by using a wheelchair.

However, color is completely at our whim. When it comes to color, no one needs an Octane Orange ultralight wheelchair, or Purple Passion powerchair – but, it’s what one wants. After all, the colors we choose broadcasts who we are, how we feel, what we wish to project. From brilliant black to lime green, the color of our wheelchairs is the taste, texture, and tone of our lives, expressed through our wheelchairs. And, it’s in this context that the importance of color – the vibrancy it adds to our lives – begins to prove itself.

Imagine for a moment that you’re newly disabled – or, maybe you can think back to such a time in your life. You’re in a rehab facility, getting fitted for your first wheelchair, and it’s all foreign and frightening. You’ve gone from relying solely on your body, to seeming confinement to a wheelchair, with virtually no time to emotionally adjust. And, now the clinician is running you through a litany of wheelchair specifications – to which you can’t relate.

But, then there’s selecting the color of your new wheelchair. Maybe you’re into sports, so you go for silver and black because the Raiders are your favorite team. Or, maybe you’re a hip young lady who has the pink Motorola Razor cell phone, so you pick pink to match. Or, maybe you’re a motocross fan, so you pick orange, KTM’s signature color. Or, maybe you want your wheelchair stealth, so you go with a black-on-black color scheme like seen on choppers and SUVs nowadays. Color, in this way, is a connection, from you to your wheelchair – it’s of you and for you, the opportunity to apply your personality to your wheelchair and express it to the world. 

The fact is, the moment that you feel better about your wheelchair, you feel better about your life.  And, that’s the color – the power –  of mobility.

How Onset Of Disability Influences One’s Wheelchair

At onset of disability, if you want the best wheelchair that money can buy, make sure that you get run over by a bus.

As ridiculous as that advice sounds, it’s seemingly true. What my extreme example eludes to is that not only does the type of health insurance one has determine the quality of the wheelchair one receives, but so does how one incurs disability in the first place.

As discussed by Dr. Fabrisia Ambrosio of the University of Pittsburgh in a recent article, those who experience disability due to sudden trauma, such as spinal cord injury, receive higher-end wheelchairs from the start than those with non-traumatic injury disabilities, including multiple sclerosis or muscular dystrophy, to name a few. And, in my professional experience, this assertion absolutely proves true, with ramifications not only toward one’s initial wheelchair, but also potentially affecting every subsequent wheelchair one ever receives throughout life.

The fact is, a traumatic injury is a hot-rush, non-stop ticket to the heart of our healthcare system. A spinal cord injury, for example, dictates a linear path from a trauma unit through advanced rehab, where, along the way, most patients go through state-of-the-art rehabilitation programs like those of Kessler, Shepherd, Craig, and Casa Colina rehab centers. And, it’s during rehabilitation that the best-of-the-best clinicians fit patients with cream-of-the-crop wheelchair technology, with newly-injured individuals leaving in among the most advanced manual and power wheelchairs.

However, those with progressive disabilities, such as multiple sclerosis, are far less likely to go through such an intensive rehabilitation program, never receiving such focused, all-encompassed healthcare, such as that geared toward traumatic injury. As a result, wheelchairs for those with progressive disabilities are fitted and prescribe on a more throttled scale, by local therapists and providers who may not have the cumulative resources and experience of advanced rehab centers. Further, toward progressive disabilities, therapists and providers, as required by most insurers, often only assess one’s needs in the immediate, prescribing and funding wheelchairs that aren’t of the most advanced technology, even though one’s condition may become more involved, where in several months or years, a much higher-end wheelchair may be needed.

In this way, during the fitting and funding of first wheelchairs, traumatic injury patients typically have access to higher-end mobility technology over those with progressive disabilities. However, such inequities don’t stop at the issuance of one’s first wheelchair.

Many insurers use the level of one’s current wheelchair as historic precedent for one’s next wheelchair, meaning that what you have is what you get, unless there’s a dramatic change in condition that warrants higher-end technology. The consequence is that if one is initially issued a lower-end wheelchair, one is likely to receive the same type of wheelchair at the time of replacement if there’s no change in condition, keeping one in a funding cycle of low-end mobility products.

Surely, hindsight is 20/20, and there’s nothing that any of us, as wheelchair users, can do to change our own first wheelchairs. However, as members of the disabled community, it’s vital that we look to help others new to disability. If you encounter someone about to get fitted for his or her first wheelchair, take a few minutes to point him or her in the right directions, toward consumer sites on the web, toward an outpatient seating clinic at a rehab center, toward the knowledge that everyone should ideally have when selecting a first wheelchair. In fact, your timely advice could affect the quality of wheelchair that he or she receives for decades to come.