Apologies to James Brown for the title of this post, as his 1968 funk classic “Say It Loud, I’m Black and I’m Proud” (click here to listen) helped galvanize the civil rights movement in America, offering a joyous rallying cry to people who for far too long had suffered at the hands of racism and oppression. The song was not only a shout of protest, but an admonition to embrace the very thing that conferred minority status on an entire people and turn what for some had at one time been a mark of shame into a badge of honor. On top of all that, the song irresistibly generates the urge to get up and shake your groove thing. That is, of course, if you are able to get up at all.
Those of us whose disease has progressed to the point where shaking our groove things is a distant memory and has left us visibly disabled – reliant on canes, walkers, or wheelchairs – also find ourselves members of a minority group, the disabled, the inclusion in which leaves some feeling invisible, helpless, and diminished. Much of the world simply isn’t designed for people who don’t have full use of their limbs, and the fully functional folks who populate it can be insensitive, uncaring, ignorant, and sometimes even intolerant. Though much progress has been made in in the fight for the rights of the disabled, the struggle is closer its beginning than its end.
Throughout much of history, victims of chronic illness, particularly of the kind that deform or disable, have often been looked upon with scorn, as if getting sick was somehow a mark of shame, the afflicted somehow responsible for their own affliction.
In some cultures it was considered bad luck to merely let your gaze fall upon such a person, and even in those societies with a somewhat more sophisticated purview, it was often thought best to sequester these people away, if only to keep the more fortunate from feeling uncomfortable and ill at ease. Even within the last hundred years, the Nazis saw fit to exterminate those with chronic or genetic illnesses, to keep their precious Aryan gene pool from being polluted by such wretchedness.
It’s no wonder, then, that the sick can sometimes feel some vague sense of shame, wondering what on earth they’d done to deserve such a fate. The human mind seems programmed to search for reasons, yearning for clearly defined cause and effect connections in a futile attempt to make some sense of the world and our place in it. The sheer randomness of getting hit with a miserable disease is in itself unsettling; in some ways illness might be easier to deal with if we could discern some reason for our demise, if we could appease ourselves with the knowledge that our current sorry state was brought about by some heinous act we’d committed in the past. No dice, though, the truth is that in the giant poker game of life we were simply dealt a crappy hand. Remember, though, that played the right way, with just the right amount of bluffing, sometimes even a handful of rags can be turned into a winner.
As I whiz around the city in my wheelchair, I often encounter fellow members of the electric chariot club, and always attempt to give them a friendly nod and a hearty hello. Many eagerly return the favor, but others seem to fold into themselves, clearly wishing they could become invisible, embarrassed that any attention be shined on them. My heart goes out to these folks, particularly because I completely understand where they’re coming from, and then some. I was once quite the prideful jackass, mortified at the thought that the wonderful me could wind up in a wheelchair, and when the day finally came and the damn thing was delivered, I stared at it for several hours feeling quite nauseated before working up the gumption to actually get in and give it a try.
I’ve never felt more acutely self-conscious than those first few minutes wheelchairing out on the streets of the city, thankfully with my wife by my side. Soon enough, though, I realized that most of the people on the street were so self-absorbed that they didn’t even notice me, as was evidenced by their propensity to walk right into me and my mechanical monster, as if anything below chest level was invisible. Before long I chafed at the idea that some freaking wheelchair was going to define me. Screw it, I would define it. I am not a chair, a cane, a walker, or an ankle brace, I’m Marc, and maybe now an even better version than the old Marc, having survived and learned from the endless gauntlet of physical and emotional affronts so thoughtfully provided by my disease and the modern medicine machine into whose belly I’ve forcibly been thrust.
Chronic disabling illness provides quite the double whammy; not only must the patient deal with the sobering psychological realities of being sick, but also with the physical handicaps wrought by their affliction. I’d imagine that even for the most stalwart among us, the burden can sometimes be just about too much to bear. Despite always attempting to publicly put my best foot forward (ha ha), each landmark on the road to disability has caused me emotional turmoil and plain old heartache. I’ve stumbled down a path familiar to far too many, marked by a succession of assistive devices, each one more obvious and discomfiting than the last. The anticipation that preceded my needing each of these devices was undeniably gut wrenching, so much so that in retrospect I realize that I put off reluctantly accepting their help for far too long. Frantically holding on by my fingernails to a self-image that had simply ceased to be, when I finally relented and allowed these mechanical aids into my life, they brought with them much needed relief and liberation, rather than the shame and revulsion that I had been so fearfully expecting.
Overcoming the mental and physical hurdles represented by accepting my increasing vulnerability has certainly given me a new sense of perspective, and maybe even a pinch of wisdom. The strange truth is that although my disease has left me exceptionally weaker physically, it’s also made me immensely stronger psychologically. Like each and every one of my fellow patients, I’ve overcome obstacles before which I thought I would simply shatter, and by so far surviving the raging battlefield of illness I’ve gained self-knowledge and an inner fortitude that I never previously could have imagined myself capable. I’ve witnessed bravery and guts in other patients that have oftentimes had me verging on tears, daily displays of strength often nonchalantly expressed with nothing more than a smile and a shrug. I tip my hat to all of you, and invite everyone to join me in raising a big middle finger to any thoughts of shame or self-doubt brought about by the random bad luck of being socked by a serious illness, to any notion that we as people have somehow been diminished by our disease, and to the goddamned disease itself. Having and living with MS sucks, but the challenges it presents give ample opportunity to display grace, courage, and powerful determination.
Say it loud, I’m a gimp and I’m proud!
Marc Stecker worked as a DVD production director before being diagnosed with primary progressive multiple sclerosis in 2003. He requires a wheelchair to get around New York City, where he lives, and he takes videos and still photographs of the city from his vantage point. He blogs at Wheelchair Kamikaze where this post originally appeared.