Karma Of Mobility

When I was nine, we were poor. My father had skipped town, my mother was working part time as a schoolbus driver, supporting my brother and me in a tiny duplex on the bad side of town, never having enough of anything – money, education, self-confidence. Yet, what my mother did have was a sense of empathy for others, understanding that the best effort that she could make was toward helping those more in need than us, where, as she often explained, unconditional good deeds would likely come back upon us in meaningful ways if we were ever in dire straights.

And, time and time again, her belief in helping others proved reciprocating, where she often gave our last dollar to someone who needed a hot meal more than we did, and then when our lives were at a breaking point – our car broken down on the side of the road, or an eviction notice stapled to our door – good karma enacted, with another empathetic person stepping in to help us, where an inexplicable chain of events led a kind-hearted mechanic to the car or a resourceful social worker to the door. It seemed that my mother, through generating good karma, had a surefire system of always getting by – by simply helping others. “Things always just work out,” my mother said. “Do the right things for others, and things will eventually come your way, too.”

As an adult, for better or worse, I’m not as secure running solely on faith as my mother was, understanding that education, meaningful career paths, and financial responsibility are surer ways toward everyday security than living on the edge, trusting that between the door and the street, good karma will rescue you. Yet, in the mobility world, my mother’s belief of generating good karma by helping others always proves true, where I’ve witnessed that users who put others’ mobility needs in front of their own always come out with enhanced mobility.

Most recently, I was at a user’s house, setting him up with some wheelchair technology that I thought might enhance his mobility, and I realized that I didn’t see any other wheelchair in his house besides the wheelchair he used. The absence of multiple wheelchairs struck me as odd because usually upon visiting one’s home, I see an array of wheelchairs, at least an old manual chair tucked in a corner for when one’s regular wheelchair needs servicing. But, in this gentleman’s case, I didn’t see an extra wheelchair anywhere.

“Do you have a back-up chair?” I asked, thinking that he would say it was hidden away in the garage or a closet.

“No, I don’t,” he said. “I had one, but I know this guy who’s a double amputee, and his insurance wouldn’t cover a chair, so I figured he needed my old one more than I did, so I gave it to him.”

“How long ago was that?” I asked.

“About two months ago,” he said.

And, it all then made perfect sense to me – that is, he unconditionally gave his back-up wheelchair to someone who truly needed it, and the good deed was then coming back to him in the form of additional mobility technology. The karma of mobility was on his side.

I hear and witness the karma of mobility everyday, where users who help ultimately receive sustained mobility, themselves. Is the karma of mobility an intangible, entirely anecdotal, impossible for anyone to prove – entirely idealistic?

Sure it is. But, I have never seen the karma of mobility fail in practice.

It Takes One

You’ve likely heard the phrase, “It takes a village to raise a child,” expressing the sentiment that community responsibility as a whole is vital when it comes to making a difference in the lives of those around us.

However, that adage, as well intending as it is, doesn’t always prove true. The fact is, it doesn’t “take a village” to facilitate change, to impact the life of another; rather, it takes only one person to facilitate change, one person willing to assume responsibility, one person to accept accountability, one person to come forward and address an issue, to make a difference.

Every evening, via email, I receive newswire articles relating to the word “wheelchair.” Throughout the year, the news stories come and go, from inspirational to absurd to heart wrenching. However, the ones that jump out at me the most are the ones where people are truly in need, where someone’s wheelchair was stolen, destroyed in a fire, or such. The articles’ photos are always the same scene – a person sitting in a hospital-type manual wheelchair that was donated by the community, that’s far too wide, without a cushion, horribly positioned.

My daughter and I read one such article several months ago, of a 15-year-old young man whose manual wheelchair was stolen from his family’s porch. And, there he sat, awkward, in a hospital-type wheelchair that looked three-times his size.

“What’s going to happen to him?” my daughter asked.

“They’ll either find his chair, or they’ll get him a new one,” I replied.

“What if they don’t find his chair or get him a new one?” she asked.

My daughter was on to a key question: What is the ultimate outcome of such stories? How or when does an individual get back into appropriate mobility after such a devastating event, and does community outpouring resolve the situation?

I contacted the reporter, and he explained that it was terrific that the good Samaritans had donated the hospital-type wheelchair, that the young man’s provider was appealing to the insurance company to buy him a new wheelchair. Understandably, the reporter didn’t seem to know the difference between one wheelchair and another, nor did he seem to realize that the young man was in mobility limbo without an appropriate wheelchair for his needs. Through my conversation with the reporter, it sounded like it was the end of the story – that is, the community had donated the hospital-type wheelchair, and the provider was submitting to the insurer for a new wheelchair.

Yet, the boy still lacked appropriate mobility, where everyday without an appropriate wheelchair was a day lost, where one aware person could make all the difference, where one person could likely order a new, appropriate wheelchair, having it delivered within in a few days. Maybe it meant an inspired individual using some of his or her own money to fund a new wheelchair, or maybe it meant quickly collecting cash donations, or maybe it meant calling a wheelchair manufacturer to donate a custom wheelchair. By any means, one tenacious individual could have helped restore the young man’s mobility in a matter of days, not weeks or months. One inspired individual could have immediately taken action, fostering the young man’s mobility and independence, rather than simply closing the newspaper, trusting that the community at large would address the issue.

In the new year, I encourage you to be that one person to make a difference, the one who doesn’t close the newspaper on such stories, the one who makes the phone calls on behalf of your fellow wheelchair user in need, ensuring that his or her mobility isn’t left in limbo, that his or her mobility is properly restored.

Sure, the “village” may seemingly address issues, but it’s up to you to make a true difference.

The Wheelchair Unconditional

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

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

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

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

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

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

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

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

Cross-over Mobility

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

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

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

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

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

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

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

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

Difficult Customers

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

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

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

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

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

Two Of The Same

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

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

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

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

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

Constitutional Mobility

Has anyone ever told you how lucky you are to have mobility?  Has anyone ever walked up to you and said, “You know, a lot of people aren’t as lucky as you to have that motorized wheelchair.”  Well, I’ve heard countless forms of the tired adage, “Be grateful for what you have,” and it always irks me, recognizing it as the most socially demeaning forms of patronization toward those with physical disabilities.

I, for one, don’t believe anyone is lucky to have mobility.  What I do believe is that those who go without adequate mobility are deprived of more liberties than most prisoners behind four physical walls.  I believe that the fundamental rights specified in Amendment I of the United States Constitution – rights to various forms of expression – cannot be achieved without adequate mobility.  I believe that an individual’s opportunities to succeed in society – education, employment, healthcare – cannot be fully realized without adequate mobility.  And, I believe that one’s emotional and mental health suffer without adequate mobility.  Point blank, I believe that mobility is as important to one’s existence as every word in the United States Constitution, as every cry for equality among the races and sexes, as every human’s rights law ever signed.

For one to suggest that we should consider ourselves lucky to have mobility goes beyond absurd, into the realm of socially destructive.  Imagine the uprising if, in the U.S., it was determined that only the privileged few of a minority group were allowed out of their homes.  Imagine a white person walking up to a person of a different color, and stating, “You’re lucky to be allowed out of your house.”  It would be offensive, discriminatory, racist, possibly illegal, and entirely offensive; yet, this happens everyday to people whom use wheelchairs, and it’s somehow viewed as acceptable thinking, that it’s alright for us as a group to take a lesser role in society, to have the privilege to participate in society, not the right.  

The question is, what steps do we take to help further promote mobility as an essential right, not a privilege handed to us?  On an interpersonal level, when someone suggests you’re lucky to have a chair, take a moment to tactfully explain to them that a wheelchair isn’t a privilege, it’s a necessity, affording you the ability to pursue life to the fullest, to obtain the same rights they have, that everyone is entitled to such societal liberties.   From a consumer standpoint, vote with your dollars, demand that manufacturers build better, more affordable products, do your homework and buy those that are great in performance while reasonable in price.  And, on the government level, if you are drowning in an insurance undertow of funding cuts, get your Congressman involved, let the leaders of our nation know that your voice is as powerful as any other, that you hold your representatives responsible for upholding your liberties just as they do everyone else’s.  Put simply, take a personal approach to demanding your rights, as most other groups have done to achieve equality.

If one applies the rights of everyone else to those with disabilities, it becomes clear that mobility isn’t a privilege, it’s a right.  And, as with all rights, liberties can only be had when exercised – that is, you have the right in society, and an obligation to yourself, to demand mobility, not plead for it.