By Mark E. Smith
At this writing, it’s the week of my 38th birthday, also marking 32 years of my using a power wheelchair (though, not the exact same one, as that would be downright weird considering that my career is in wheelchair design and manufacturing – it would be like Apple’s Steve Jobs using a Sony Walkman from 1982 instead of the iPod that his company invented).
32 years of power wheelchairs – think about that for a moment. That’s 11,680 days that I’ve spent in a power wheelchair, or approximately 186,880 hours – the literal equivalent of 16 hours per day, 7 days per week, for 32 years. Yet, when I maneuver through a restaurant, people still comment how well I “drive that thing.” After, 186,880 hours of practice, one would hope that I can maneuver past a freakin’ table and chairs without smashing Bubba into the buffet.
In fact, after 11,680 days of power wheelchair use, one would assume that by now I can operate it blindfolded – not only through my house, but for blocks at a time. To the amusement of my friends, I’ve actually done it, too – a Chris Angel mind trick, where I forewent illusion and safety for luck and stupidity.
But, it took me a long time to get to where I could not only operate my power wheelchair blindfolded, but also simply keep it upright. In the 1970s, before engineers understood fiber optics or cellular technology, power wheelchair engineers apparently didn’t understand gravity, where they made power wheelchairs that were dangerously unstable outdoors, tipping over in the slightest breeze. So, like learning to kayak, I reckon that I spent my first 23,360 hours learning to simply keep my power wheelchair upright. At some point my mother should have put a “This-side-up!” decal on my wheelchair, so passerbys knew to pick me up. Still, the beauty of the industry back then was that they didn’t make true child-sized wheelchairs, so when I tipped over, I was surrounded by the finest, over-sized adult wheelchair – I was like an egg in the center of a gigantic suitcase, sliding side to side, without breaking. Humpty Dumpty had nothing on me.
And, in those days, I inadvertently found my first soap-box speaking platform, too – by sitting on it. There was no such thing as “pan” rehab seating – only vinyl slings – so if you needed custom seating, the therapists went Fred Flintstones on your butt, and built the finest, rock-hard, plywood seat insert that money could buy. After all, why rely on soft foams and rehab technologists when there’s a sawmill and woodwright around the bend?
Of course, reliability was a given – as in, there was none. I suspect that each power wheelchair was manually pushed off of the assembly line, as actually running it would have cut too much into the motors’ life span. And, then there were the parts that were so poor that they must have been made in a plastic spoon factory, right next to the plastic knives that always break. In fact, when you bought a new power wheelchair, you had to buy aftermarket “Davis Forks” to replace the Dixie-Cup cardboard ones that came on the power wheelchair. I suspect that the standard-issue, flimsy forks that broke upon first use were a practical joke gone too far – after all, there’s nothing funnier than seeing a little kid with cerebral palsy tip over in his wheelchair when the front wheels fall off; but, when, as a manufacturer, you do it to every wheelchair user in the country for years, the humor eventually wears off, even for Jerry Lewis, I suppose.
But, make no mistake, power wheelchairs have made my life. I was able to be one of the first severally disabled students mainstreamed in a public school because of a power wheelchair – sure, the teachers and other kids were a initially a bit freaked out by my wheelchair, but it got me around, mobile within in the public education system, ultimately to where they then couldn’t kick me out even when they tried out of sheer discrimination. As long as I could get myself to class, they couldn’t stop me from attending – they didn’t count on my power wheelchair as my secret weapon!
I’ve been to the top of Yosemite’s Glacier Point, and to Maui’s Black Sand Beach, both while using a power wheelchair. In other highs and lows, I met my true love while using a power wheelchair; then she dumped me while I used a power wheelchair; then lots of other chicks dumped me while I used a power wheelchair; and, then my true love eventually married me while I used a power wheelchair.
I met the President of the United States, senators, congressmen, and celebrities while using a power wheelchair; I graduated college with two degrees while using a power wheelchair; I authored books, appeared on television, and have raised my daughter – all while using a power wheelchair.
I’ve been hired – but never fired! – while using a power wheelchair. And, yes, I’ve even made whoopee while using a power wheelchair (actually, that’s a complete lie, but you know that you were wondering!).
And, that’s what makes power wheelchairs simply amazing to me: The life-building liberation that they provide. When I think of the unbridled empowerment that my power wheelchair has afforded me for the past 32 years – education, career, family, and success – I can’t fathom another device that I would have rather spent 186,880 hours using. It’s all taught me that the moment that one truly realizes that a wheelchair isn’t about confinement but is about liberation, a world of opportunity opens up, where one’s life is no longer centered around disability, but is about parenting and employment, black sand beaches and sunset strolls, if you wish.
Now, despite my successes, I’m sure that some might still look at my life – my severe cerebral palsy, my power wheelchair – and think to themselves, “I can’t imagine having to live in a power wheelchair for 32 years….”
And for them, I have a very simple reply: I can’t imagine living without one.