Misery

 

By Mark E. Smith 

Here’s a riddle: What’s the difference between you and me when our wheelchairs breakdown?

The answer is, when your wheelchair breaks down, it’s obviously a very serious issue. However, when my wheelchair breaks down, it’s a Stephen King movie in the making.

Now, I know that some assume that my own wheelchair never has issues. After all, I’m the WheelchairJunkie, himself, and my company makes my own wheelchair – not only am I supposed to have top-of-the-line equipment, but I’m also supposed to know exactly how to use and maintain my wheelchair at the level of a mobility professional. However, there’s one problem with that thought – my wheelchair doesn’t have a clue who I am!

Truly, if my wheelchair could talk, it would say, “Dude, all I know is that you’re a guy with cerebral palsy relying on me 18 hours per day, and when I’m ready to take a break, I don’t care who you are or what you’re doing – it’s lights out for me, brother!”

And, so my wheelchair does periodically have issues, just like I’m sure that Bill Gates finds himself pressing CTRL+ALT+DELETE to unfreeze his darn computer. Machines are machines and, unfortunately, they don’t care who we are. Of course, hopefully Bill Gates and I learn from any issues, and use the experience to help our engineering teams make better products, but we’re real people, using our own products, and surely issues occur from time to time.

Despite my machine – or powerchair, as it is – having little reverence for a mobility man of my seated stature, it at least had a keen sense of where to stop in this situation: On the sidewalk the other morning, about two blocks from my house, on my way to work, in relatively good winter weather – there are certainly worse places to breakdown.

Now, probably a lot like your instinct if your chair has ever stopped in its tracks, I immediately tried to turn it back on, hoping that maybe I just accidentally hit the power button. But, of course, life is never, ever so kind.

Nope! Sure, my chair came back on – flashing error codes, that is. I know that I sound like a rolling encyclopedia when I answer your questions and quickly note what error codes point to what condition. However, that’s when I’m calm and cool in my office – not stranded on a sidewalk, wondering how to get myself out of such a predicament? Therefore, not only didn’t I have a clue as to what the error codes on my joystick conveyed, but even if I did, I couldn’t do anything about it myself, unable to reach beyond my seat. Of course, I caught myself glancing back toward my house like a sailor adrift at sea, wondering if he can swim back to shore, to which the voice in my head reminded me, “Give it up, buddy, you’re stuck!” I hate my inner voice, namely because he’s always right.

I pulled out my cell phone, and called one of my co-workers for help – a true luxury that, unfortunately, most wheelchair users don’t have. However, while I waited for him to arrive, a woman came out of her house, noting that I was obviously stuck, smiling and glad to see me. She mentioned that she knew who I was, acknowledging that she knew where I worked, and called me by name; but, I had no clue who she was, other than a woman seemingly delighted to see me stuck in front of her house at 7:30 in the morning.

“Do you think that you can fix it?” she asked, smiling.

“No, I have someone on the way,” I said.

“Well, if you can’t fix it, I guess everyone’s in trouble then,” she replied, laughing. “It looks like Mr. Wheelchair is stuck.”

“Oh, I can fix it, just not here,” I said, clarifying the situation.

 

“Do you know what’s wrong with it?” she asked, looking at one side of my chair, then the other, as if she might see something wrong.

“No,” I simply said, looking up the street, hoping I’d see my co-worker coming my way.

“If you don’t know what’s wrong with it, how are you going to fix it?” she asked, still smiling, clearly enjoying this Q-and-A of the WheelchairJunkie stuck on the sidewalk.

So, it’s just my luck that I not only had my powerchair stop dead on my way to work, but in front of Annie Wilkes’ house, the Kathy Bates character from the movie, Misery, who holds her favorite writer hostage out of obsessive adoration.

Then, I swear, the woman popped the exact question reminiscent of Misery that I didn’t want to hear, “Why don’t you come inside the house and get warm.”

Firstly, again, I’ve seen the movie, and I wasn’t about to fall for that trick! Secondly, I was strapped into a 300 lb. powerchair that was dead in its tracks, and there were four steps into her house – she couldn’t get me in her house if she wanted to. Lucky for me.

“My co-worker will be here any moment,” I said, hoping I was right.

“Well, I just think this whole situation is hysterical!” she said, raising her voice like she’d won something.

Fortunately, my co-worker showed up with my accessible van that he’d picked up from my house, whisking me off to work and repair.

It turned out that earlier that morning, while I waited with my daughter at the school bus stop, my daughter was horsing around, and caught a cable on the back of my powerchair, sending my powerchair into an error code, which promptly went away. At the time, I reckoned that she’d simply jostled a connection; however, as I later learned, she’d pulled the cable to a point where the connector barely had contact, and it waited patiently to lose entire contact two blocks later, leaving me stranded. As I’ve explained to my daughter, accidents happen and once we found the issue at my office, a new cable allowed me to quickly get rolling again.

All of this reminds me of two important lessons: Firstly, my powerchair and daughter are just as quick to wreak havoc on my mobility as the next guy’s, as they don’t give a hoot who I am. And, secondly, from now on, I should avoid the sidewalk in front of that lady’s house – I may not get away from her next time!

Pop-Up Disability

 

By Mark E. Smith

What ever happened to the Internet as the great equalizer, where our disabilities weren’t supposed to matter? How is it now that seemingly everywhere I surf on the web, so-called disability-related banner ads are plastered on my screen, illustrating that someone somewhere has me clearly tagged as a web surfer who has a disability?

My brother-in-law is a computer geek by profession, so he clears my cookies and caches, and all of the other cyber stuff floating around in my machine that can splatter my Dell’s DNA on the Internet. Still, when I log on to sites like Google or MySpace, disability ads blaze across my screen (how is it that the MySpace staff can’t tell a 41-year-old perverted predator from a 14-year-old Hannah Montana fan, but they know instantly that I have a disability the minute that I log on?).

One theory for my getting pegged as a wheelchair user online is that because I visit my own site, WheelchairJunkie.com, that other sites that I visit simply see ”wheelchair” as a popular term in my browser, and cater ads to me accordingly.

Nevertheless, what amuses me is that the so-called disability ads steered toward me as a demographic are always totally wrong. I often get an ad pushed at me for an adjustable bed, with a 70-year-old lady propped up with a fried chicken TV dinner on her lap. Show me a 25-year-old blond, in a bikini, on a water bed decked in silk sheets, and then I might click – but, show me 70-year-olds eating fried chicken in bed, and I’m clicking the other direction in a hurry.

My favorite disability-related ad is one I call “Gangster Guy,” which pops up every time I visit Fox News (which I guess I deserve for visiting Fox News!). I’m so distracted by Gangster Guy’s ridiculous nature that I don’t even know what he’s advertising, but if you’ve seen him, you know who I’m referring to: He’s a thugged-out gangster-looking dude in a wheelchair, complete with baggy Sean John jeans and a Gucci hat swiveled to the side like he just rolled out of an inner-city rehab, gunshot wound and all. Yet, in all seriousness, what disturbs me about the ad is that I’ve been to the country’s inner-city rehab hospitals, where the vast majority of in-patients are gunshot victims who look just like the dude in the ad, many shot as a result of gang affiliations, where they’re not allowed to be discharged in red or blue wheelchairs out of fear that such gang colors will simply get them shot again. So, as charming as a hip-hop disability-related ad may seem, clearly the advertiser has never been to an inner-city rehab to fully understand the demographic portrayed by Gangster Guy.

The fact is, I’m a 36-year-old dad, working a white-collar job by day and pontificating as a writer by night. I don’t have anything in common with old ladies eating fried chicken in adjustable beds or gangsters wearing unlaced Adidas – and I certainly don’t click on such ads.

Nevertheless, there’s still hope for me as a revenue-generating ad clicker online. If the advertisers stop stereotyping me as a surfer with a disability, and slip content on my screen that might tie into my true demographic – men’s business attire, parenting, reading, minivans, bikini models on water beds – then they might sucker me in after all.

Disability Rights or Child Welfare?

 

By Mark E. Smith

 

They say that there’s always two sides to every story, but aren’t the facts still the facts? This is one of those cases – surrounding a parent with a disability, no less.

 

“A disabled mother fights again for right to raise her child,” is the headline of a circulating news story this week, And, if you’re a parent with a disability like I am, that headline is sure to capture your attention, conjuring natural thoughts of, “You mean someone, presumably a court, isn’t allowing a mother to raise her child because the mother has a disability?”

 

Then, the opening of the article confirms such a thought:

 

The first time Sabreena Westphal went to court to try to keep her children, she became a celebrity. Suffering from cerebral palsy and unable to walk or fully use her arms, she was still determined to care for her two young sons. Disabled parents and advocates rallied behind the young woman with the pixie haircut and impish smile who, at the time nearly 20 years ago, went by the name Tiffany Callo. She was the subject of a book, “A Mother’s Touch: The Tiffany Callo Story.” She rode in a limousine to an appearance on “Donahue.”

But the book didn’t come with a happy ending. Her little boys were adopted and taken far from her San Jose home.

Five years ago, she became pregnant again. And now she’s back in court.This time, Westphal, 40, is trying to prevent her 5-year-old daughter from being adopted by a couple in San Joaquin County. This time, she has the Americans with Disabilities Act of 1990 on her side and a political landscape that has changed substantially for disabled Americans.

As if those details aren’t alarming enough, it turns out the Westphal and the father of the 5-year-old have had an additional streak of bad luck, with Westphal having been hit by a car in her power wheelchair, and her child’s father being hospitalized for lupus.Surely, Westphal sounds like a mother with the world against her.

However, as one learns more of the story, another side comes out, one generated more by facts from social workers, courts, and family members than by a heavily-spun disability rights story: Westphal’s disability clearly isn’t the reason why her kids have been taken away. In fact, as reported, Westphal has a 20-year history dating back to drug use, relationship volatilities, a lack of developing a healthy support system, accusations of child abuse, passing her children off to neighbors and family members, and habitually failing to comply with the standards that social workers put in place to care for her children.

Line up Westphal, the disability-rights activists, and the media spinning the story, and it becomes obvious that they’re all overlooking the most important part of the issue: The 5-year-old child’s welfare.In fact, this story isn’t about disability or the ADA at all; rather, this is a story about a child whose needs were reportedly neglected by her parents, including a mother who failed to provide adequate support for all three of her children at different times.

I appreciate that Westphal wants her child back, using disability rights as a soapbox; however, is that really what’s best for the child?

Based on what I’ve read, of course not. The 5-year-old needs a stable, safe, functional, caring home, and, disability or not, Westphal has reportedly failed to meet those obligations, arguably through making poor decisions over and over again.

Beyond my own fatherhood, I’ve known many couples with disabilities raising children, where social workers have never entered the picture. And, there’s no secret to the success of these parents – they simply provide stable, safe, nurturing, responsible homes, where the child’s needs come before their own. These are principals that all appropriate parents follow, regardless of disability.

There’s no doubt that the Westphal story is ultimately sad all the way around, where everyone in the story seems on the razor’s edge of life. However, the real tragedy is the experience of the child. Westphal, by all accounts, has been given chance after chance to turn her life around, and has failed to do so. Yet, the child never had a chance, born into a reported unfit home, shuffled to neighbors and family, neglected by her parents, never to know the parental bonding, trust, and stability that every child requires.

And, that’s where I, as a parent, believe that this case comes into a clear, concise perspective: It’s not about disability rights in the least. Instead, it’s a case exclusively about responsible parties – family, social workers, and the courts – determining what’s best for a child.

That Kind of Dog

By Mark E. Smith 

“Special-Needs Dog Finds Happy Home with Special-Needs Family” – that could be the sappy, sentimental headline to this story. Or, maybe not. 

Indeed, we’ve been raising a new addition in our family, 16-week-old Lola, a French Bulldog that we’ve had since she was 8-weeks old. We’ve been huge English Bulldog fans since getting our archetype of a Bully, Rosie, several years ago, as it’s tough not to love such original characters – licking, lumbering, drooling souls, who just want to hang out with you. So, with Rosie trained and settling in to adulthood – basically sleeping, with intermittent excitement over my coming home from work or dropped food from the table – we thought it was time to get her a playmate, or lounge mate, as the case may be.

 

However, rather than get another English Bulldog, my wife and I thought that we’d take inspiration from Brad Pitt and Angelina Jolie, seeking to create a kaleidoscope of ethnicities among our Bullies, opting for a French Bulldog. By breed, English Bulldogs are extremely lovable and loyal, but admittedly lazy. In comparison, French Bulldogs are just as lovable and loyal, but more active and comical, with ridiculous Mighty Mouse ears that standup.

After quite a search, we found Lola, who’s everything a French Bulldog should be: Lovable, loyal, and comical as heck, complete with ridiculous Mighty Mouse ears. What’s more, Lola is snow white, with a black ring around her left eye, looking every bit the part of a petite, French version of Petey from the Little Rascals. Oh, and did I mention that Lola is completely deaf?

Lola has congenital deafness that’s genetically linked to her pigmentation – white dogs of her breed are prone to deafness. However, what’s especially interesting to me is that Lola has no clue that she’s deaf.

Now, you’re likely saying, “Mark, she’s a freakin’ dog – of course she doesn’t know that she’s deaf!”

Fair enough, but she’s 100% adept, where deafness doesn’t seem to have any impact on her. In fact, she comes running when we set her bowl down even when she’s not looking – I suppose feeling the floor vibration. The only notable difference between Lola and a dog with hearing is that she doesn’t react to startle noises. A banging hammer next door or a compacting garbage truck gets most dogs riled up. But, not Lola – she remains completely calm, oblivious to such noises, happily playing, sleeping, and hanging out. Surely, in the wild, hearing is a vital sense, a protection mechanism; however, in a suburban home, where she lives a lush life, Lola doesn’t seem the least bit at any disadvantage over other dogs, acting and responding typically, right down to potty training and learning the type of gesture commands that are used for obedience with many dogs.

Of course, the big Bully, Rosie, is oblivious to Lola’s deafness, too – though, sometimes looking puzzled as to why the pup doesn’t awake when she barks at her, wanting to play? Nevertheless, Rosie has caught on to getting Lola’s attention with another sense: A whack with a paw!

Certainly, some people have general hang-ups toward disability, including when it comes to dogs, as I’ve learned. Both English and French Bulldogs of registered blood lines are very expensive, and hard to come by. But, whenever a pup has a disability, as with Lola’s deafness, price and demand drop. Due to her deafness, Lola was about one-third the price of her siblings, and some of our friends even questioned why one would pay for – or want - a deaf dog?

I’ve observed that people’s reactions to dogs with disabilities says a lot about how we view disability in our culture as a whole. The fact is, if I didn’t tell someone that Lola was deaf upon meeting her, one wouldn’t know – Lola’s just an adorable, loving, smart, attentive pup of pedigree. Yet, the minute that we, as humans, label her as disabled, her literal value becomes less. The dog’s own adeptness at living without hearing is proof to me that disability is more abstract and subjective as a label than many of us realize. While disability is very clear-cut in some cases, as with my cerebral palsy, it’s more a projected label on others who are far less physically impacted, and it’s startling to realize how quick we are as a society to devalue even a pet strictly based on the label of disabled.

I absolutely agree that I have a disability, that I’m disabled by virtually any definition, and I have no concern with anyone labeling me as such. But, I can’t say the same about my silly little dog, Lola, whose adeptness and complete unawareness of our labeling her as somehow less capable truly transcends what we call disability. And, there’s tremendous inspiration to watching her live so unabashedly as her entire self – a dog being a dog, hearing or not – unconcerned and unaffected by the social baggage that we humans label as disabled.

In actuality, then, I have to change the headline to a more realistic, less projected tag: “Dog Finds Home with Family.” Sure, there’s no sap in that headline, but at least it’s accurate.

Crazy Like Brett in the New Year

(Brett pictured with Sophia)

By Mark E. Smith

When I meet fans of WheelchairJunkie.com in-person, they always have a million questions. However, almost everyone asks one specific question, word for word, “Is that guy, Brett, on the message board, crazy?”

“Absolutely nuts,” I confirm. “I’m waiting for him to mail me his severed ear like Van Gogh.”

Of course, in real life, Brett isn’t crazy in the least – but, he is among the most inspired individuals I’ve ever had the pleasure of knowing, where he quietly strives to empower those around him, making his community a better place in the process, day after day, no matter how his life has changed.

I’m not sure how long I’ve known Brett, but my first encounters with him must have been seven or eight years ago. And, I’ve been a fortunate witness ever since to the powerful life journey that he’s lead.

In 1991, Brett was graduated with both a B.S. in biology and a B.A. in art, going on to pursue a doctorate in neuroscience. In 1997, his education goals were achieved, earning a Ph.D. from Temple University. And, in-between, Brett pursued his passion for teaching, pointing to a likely path as an inspired young professor.

However, as you, yourself, may know, there are no certainties in life, no guarantees that if we simply work hard and live well, we are assured of calm futures. For Brett, this reality was presented in the first-person when, in 1997, just one week before receiving his doctorate, he was diagnosed with multiple sclerosis.

By 1999, Brett used a wheelchair and scooter, facing the progressive realities that many with M.S. experience. As I knew Brett through correspondences and meeting up with him at expos, I saw that there were obviously tough changes occurring in his life, the ebbs and flows of romantic relationships complicated by disability, the realization of losing portions of his independence, and the necessity to make changes in his living arrangements due to his progressing condition.

Yet, the more Brett’s life changed, the more focused he became, finding safe harbor in his two truest foundations, religion and art. It was these two passions that compelled him not to let M.S. slow him, but to inspire him. In the 10 years since his diagnosis, Brett has become a fixture in the M.S. community. Not only has he played a key role in championing 21^st-century awareness for M.S., voicing the need for more research and a cure, but he’s a tireless volunteer and participant at Good Shepherd Rehabilitation Hospital in Allentown, Pennsylvania, where he helps lead the art-wellness program and raises funds through such activities as an annual M.S. Walk team. In fact, in 2007, Brett embarked on the acclaimed Faces of M.S. Mask Project, an art endeavor in which participants created plaster masks of their own faces, painted as an expression of themselves in light of the disease. Of course, with such a positive outlook, it’s no wonder that Brett is a sought-after speaker, including delivering keynote addresses at M.S. conferences.

Personally, Brett is an artist in the truest sense, his paintings coming from within, the canvas calling him, a passion that is a bit hobby, therapy, study, and vocation mixed in, recognized by galleries, showings, and patronages. And, when not volunteering or working on his art, Brett practices a deep devotion of faith, leading prayer groups and singing in his church’s choir – a clear source of his inner-strength.

Of course, Brett will tell you that much of his success comes from his not being alone on his journey, with unyielding love and support from his parents and family, as well as his best friend, Sophia, his extraordinary German shepherd service dog who’s always by his side as confidant, partner, assistant, and cheerleader.

Despite the countless lessons that Brett’s zeal teaches many of us, what strikes me most of all is that his life prove among my own foremost beliefs: Life doesn’t always work out the way we want, but if we have faith, it does workout exactly the way that it’s supposed to – that is, presenting us with opportunities to learn, grow, and empower, making a difference in the lives of many others along the way.

In the New Year, let us all strive to follow Brett’s lead. Let’s not dwell on what we’ve lost or don’t have, or concern ourselves with what unwanted life changes may come our ways next. Rather, let’s draw upon our strengths and passions, and allow them to lead us toward making a difference in our our own communities and in the lives of those around us. Let us know that although we may not be able to control what happens to our bodies, with dedication, fortitude, and perseverance, we can control the impact that we make in the world – an impact that offers understanding, hope, and empowerment to others.

Conspiracy of Three

I’m not superstitious – except when it comes to the number 3 and wheelchairs. 

Black cats can cross my path all day; I’ll roll underneath ladders without a care; and, my muscle spasms have caused me to break countless mirrors in my life. And, none of it worries me a bit.

But, if I encounter two users with wheelchair issues, I have to close my eyes, and count backward to negative 100. Why, you ask?  Because if I don’t break the curse, another user will experience a wheelchair issue.  After all, I don’t want anyone to have any wheelchair issue, ever, let alone three people.

But, it’s a proven fact that users have wheelchair issues in groups of 3. You’ve heard of people dying in groups of 3, well wheelchairs break in groups of 3, too. I don’t know why wheelchairs have issues in groups of 3, but they do. If someone in Tampa has a battery issue, and someone in Toledo has a seating issue, within ten minutes, I’ll receive an email from someone in Tempe with a funding issue. It’s always 3. Is it completely bizarre? Sure. Does it consistently occur? Absolutely. Read the WheelchairJunkie.com Message Board, you’ll see.

Of course, I’ve tried to figure out the cause of the Mystery Pattern of 3, looking for a scientific explanation – is it based on weather, or the seasons when people are outside more, or during months when more new wheelchairs are sold than others?  Maybe even the lunar phases somehow affect wheelchairs?  But, alas, I haven’t found an answer – at least, not based in science.

What I have concluded is that it’s a conspiracy.  No, I don’t normally believe in conspiracies – but, this one is just that, a conspiracy. After watching Oliver Stone’s JFK, and reading countless books on Area 54, I’ve determined that it’s probably not that wheelchairs break in threes, but that there’s a secret network where users make plans – even scheduling dates – sending me their issues in groups of threes, trying to freak me out (no, I’m not paranoid, either – except, of course, when it comes to people who are out to get me). 

I mean, how else do you explain the fact that Elvis, Jimmy Hoffa, and Amelia Earhart all contacted me the other night about their wheelchairs needing repair?

Sitting Tall

After 33 years of wheelchair use, I recently got my first elevating seat. Surely, I’ve known countless people who have had elevating seats on their wheelchairs with great success, and my company has manufactured them for many years; however, personally, I just never had one.

 

Environmentally, an elevating seat makes clear sense: It gives the ability to reach high places. Additionally, with the popularity of raised tables and bars at restaurants, an elevating seat increases social access, as well as allowing one to see over standing crowds at concerts and sporting events.

 

However, what’s truly captured my interest was in the common sentiment that I’ve heard users of elevating seats convey, that being able to look others directly eye-to-eye when elevated, as if standing, was a life-changing experience, for once not having to look up to others.

 

This expressed benefit of an elevating seat changing users’ literal perspectives on the world intrigued me. I’ve always lived my life quite comfortably and assuredly by using a wheelchair at a visual height of 4-foot-something, so was I missing out on some aspect of sitting taller at 5-foot-something that I never realized – that is, would being taller change the way I saw myself, others, and the world?

Based on all of the remarkable life-changing experiences I’ve heard, I was admittedly a bit nervous elevating for the first time. After all, was I going to realize all that I’ve missed out on by not being elevated all of these years? Would my wife, daughter, and house look different? Or, would I possibly feel different about myself, having greater confidence or esteem by being at literal eye level of others?

Nope. I hate to burst your inspired bubble, but sitting a foot taller makes no intellectual difference to me. I mean, sure I can reach higher places, and being able to sit at raised tables and see over crowds is fantastic – it makes the feature well worth buying. But, perception wise, it doesn’t make a darn bit of difference toward who I am. My wife, daughter, and house look the same to me, and, in fact, I don’t visually see any difference sitting about a foot taller than usual – and I certainly don’t feel any difference.

The fact is, I’ve never felt like I look up at the world or that it looks down on me. In my everyday seated position, socially and intellectually, I’ve always felt on a level field, right down to looking people in the eyes when we speak. Some might say that my view stems from my never having walked, that if I walked, my view from a wheelchair would seem different, like others really were looking down to me. 

I couldn’t disagree more. If one has a complex emotional hang-up regarding disability, a belief that one is less of a person when sitting in a wheelchair than when standing up, of course one will view height as an issue, believing that sitting taller somehow makes them appear less disabled. However, I say that height has nothing to do with me as a person or the extent to which others perceive disability. No matter if I’m a foot taller or shorter, looking at eye level or breast level, I’m still the same person. (And, in the interest of full disclosure, even when I’m sitting at eye level, I’m still predisposed to look at breast level, but only on certain individuals – this proves that added height does not change me for the better.) 

Interestingly, I heard a gentleman note that upon elevating his seat, his wife wanted to dance with him for the first time in 20 years. It is a touching sentiment; yet, it’s completely twisted, too. His wife wouldn’t dance with him at 4-foot-something, but would at 5-foot-something – how is that a relationship to appreciate? If my wife based any of our relationship on my height, not on who I am as a husband, father, and person, I’d skip the new elevating wheelchair, and, instead, look for a new wife! 

In fact, upon elevating the first time, I asked my wife what she thought of my new stance, to which she shrugged and noted, “It looks like an elevating seat to me.” 

No, an elevating seat didn’t turn me into Brad Pitt in my wife’s eyes. But, that’s alright – she’s always danced with me no matter how short and dorky I am. 

The fact is, as terrific as an elevating seat is toward environmental access – and we should all have one for that reason – it doesn’t change who we are. Anyone basing one’s self-worth or esteem on how tall one sits is missing out on a fundamental key to succeeding with disability: We are bigger than our bodies, and it’s not what we see, but it’s how we see ourselves. Sitting tall, it turns out, isn’t about height at all.

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.

Monotubing Me

The saying that everything old becomes new again has never been truer than when it comes to today’s ultralight manual wheelchair market, where Rainer Kuschall’s decades-old monotube design is all the rage, with virtually all manual wheelchair manufacturers now offering monotube models. To use another cliché, one might say that the bandwagon is better late then never.

Nevertheless, even though it took 22 years for the monotube to catch on in the U.S., it’s done so for good reason: A monotube makes for a responsive but forgiving ride, in a lightweight, compact package, with a sleek, minimalistic aesthetic.

I’ve used a rigid frame style manual chair for the past two decades, with my most recent built 7 years ago. I’m no jock or super-para by any stretch. In fact, I’m a complete spazzo on wheels – which is all the more reason for me to use a rigid frame, as in for utmost durability and propulsion efficiencies, compensating for my spastic, tone-driven push strokes. So, with my company increasing its presence in the manual chair market, and my needing a new rigid, I was fortunate to be able to put together a frame set of my own this year – a monotube, no less – in time for flying to MedTrade and other upcoming travel.

My frame set aside, the choices that I made toward components – such as rear wheels and casters – are the most applicable topics of discussion, using aftermarket components that are widely available, ones that you might use on your own chair.

Weight is critical toward wheelchair propulsion, especially at the rear wheels. A heavier wheel simply requires more energy to accelerate and propel than a lighter wheel, so the lighter the rear wheels, the easier a manual wheelchair is to push. With this principal, I began with a Spinergy Spox LX rim, which is among the lightest rims available.

If I wished the absolute most efficient, lightest wheel configuration, I would have finished the Spinergy LX rim with an aluminum handrim and a 100psi clincher tire. However, being that I’m using the chair for travel in everyday enviroments, I chose to run a slightly heavier but more practical set-up.

For tires, I went with a 65 psi, 1-3/8” everyday tire. Everyday tires offer better terrain handling, hold optimally with brakes, offer increased puncture resistance, and better maintain air pressure than 100 psi clinchers. Unquestionably, 100 psi clincher tires are far more efficient on ideal, hard surfaces than 1-3/8” everyday tires; but for everyday use on unpredictable terrain, 1-3/8” everyday tires are a sound choice.

The handrims were another choice made out of practicality. I went with ergonomic handrims for better grip over standard tubular handrims. And, indeed, the ergonomic handrims allow a notably comfortable, efficient grip – even on my one hand that doesn’t have a much coordination – and they are tremendously more effective toward uphill pushing and downhill braking. As such, from an ergonomic viewpoint, they are fantastic. However, ergonomic handrims are much heavier than a standard aluminum handrim – about 1 lb. Per side – to the point where the wheel feels heavier. What’s more, because the weight of a handrim is spinning at the outermost portion of the wheel – the most consequential place to add weight to a manual wheelchair – the heavier rotational weight of the handrim surely detracts from performance. However, the question becomes, do the benefits of ergonomic handrims outweigh the drawbacks of extra weight?

In my use, absolutely – the increased propulsion efficiencies that I get from using ergonomic handrims is well worth the trade-off in weight. The ergonomic handrims simply allow me to propel the chair dramatically better (or, at least keep the darn thing rolling in a straight line, which is the best that I can hope for!).

On the front casters, I went big for a monotube with an 80-degree front frame bend, squeezing in 6”, soft-roll front casters. Again, on ideal, flat, hard, smooth surfaces, an 80mm or 4” caster would prove most responsive. However, in everyday use, on unpredictable surfaces, a big, 6” soft-roll makes for an easier, safer ride. And, they are totally smooth, void of chatter on rough surfaces, which is a nice difference from small, hard casters – the chair all but glides. Plus, the aluminum rims are always a classic cool look.

Another practical touch are my quick-release stroller handles, set behind the backrest. On the one hand, I need a low back height for self-propulsion, but then the push handles are too low for others to push me when needed. To address this, I added height-adjustable, quick-release stroller handles that are placed at the right location for a companion, without interferring with my my positioning.

Of course, even though we built my own chair, I wasn’t without fitting issues like many users, where my posture doesn’t like to conform to typical seating and angles – I’m not a sit-and-go kind of fit. As has always been the case, I build my seating as close to my needs as possible, then a lot of tweaking still has to occur with adjustments to angles, cushions, and straps. While I understand this involved process, my ever-teasing daughter viewed it a tad mored bluntly. While fitting myself at home in my new chair one evening, I explained to her that we had to take the chair back to my office for some changes to the backrest, as it wasn’t fitting my angles and posture quite right.

“So, the back is wrong?” she asked

“Yep – I need to make it fit my crazy posture better,” I said, transferring onto the couch, my daughter holding the chair.

“But, you’re the one who made it, right?” she asked.

“Yep,” I replied.

“If you made the back, and it’s wrong…” she said with a smile, “…then that means that you made you’re own chair wrong.”

“Exactly,” my wife chimed in from the kitchen, making my daughter laugh.

“Come here, shorty – let’s see how well you fit!” I said, grabbing my daughter, pulling her onto the couch, tickling her.

“I take it back, I tack it back! You are the WheelchairJunkie!” she exclaimed, laughing hysterically.

Indeed, monotube wheelchairs and kids are fun – and even more fun together.