Category: Wheelchair Wisdom

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.

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.

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.

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.