When Disability is the Story

By Mark E. Smith

I’m all for remarkable stories about remarkable people, from the historical and the famous to heroes next door. In fact, much of my free time is spent studying great people, where I’ve learned that we can discover much of our own potentials through the examples of others.

Yet, what’s discouraging is all of the mainstream-distorted disability fribble that we must wade through to get to great stories that involve disability. Sure, there are lots of so-called “inspiring” stories about disability on the newswire and television every day; but, very few are actually newsworthy when you take out the disability aspect.

For example, there’s nothing newsworthy about a 17-year-old kid with a great smile and lots of friends. But, if we give that young person a disability, then you have a feel-good cover story for your local paper, where, …Jimmy may not have all of his limbs, but he still has a smile that lights up the neighborhood. Or, there’s nothing remarkable about two parents with four kids who live on a farm. But, if those two parents have a disability – dwarfism – now it becomes a sensational reality TV show, Little People, Big World. Why is that? Why do we, as a 21st-century, westernized culture still see disability, in itself, as newsworthy and sensational, without requiring any real substance?

Unfortunately, the answer is, because our culture still doesn’t recognize the fact that many with disabilities live strikingly “normal” lives, where we work and raise families like most others. People still buy into the myth that disability, in itself, somehow makes every day “different” – and it’s captivating and mysterious to those readers and viewers who don’t know any better. It’s really tying into stereotyping and ignorance in the name of newsworthy.

Nevertheless, some with disabilities argue that such news stories and television shows about strikingly average people who happen to have disabilities are positive and educational, showing them in a “normal” light. However, that doesn’t prove true, as if that was the case, those with disabilities wouldn’t be profiled in the first place. The network, TLC, would never produce a show about an “average” family on a farm – that is, because no one would watch such a mundane subject. Yet, once disability is brought into it, then there’s sensationalism that sells. The X-factor is disability, and it reflects poorly upon everyone involved, including those of us with disabilities at large. The consequence is this: When people see those with disabilities applauded for living ordinary lives, it actually diminishes our equality, where if the ordinary is seen as our peak, then our true potential is lost in the message.

Interestingly, those of us with disabilities can likewise be falsely drawn into seeing the disability experience of others as inspirational, when it’s truly not inspirational at all. We can look at a story on television, just like everyone else, and say, Wow, isn’t it inspiring that a guy who’s a quadriplegic can play rugby, get tattooed, and pick up chicks? Yet, if you remove the disability, there’s no inspiration in that story – it’s every jock at your local bar. What we should do is remove the disability from the story, and see if true inspiration remains? For example, a 27-year-old preacher who travels the world speaking to millions is an amazing story, especially when you realize that he’s done it on his own, starting when he was 19, where religion is only part of his message, where he is also dedicated to speaking to youth about staying on positive paths, no matter the temptations or challenges that one faces. The fact that this amazing individual, Nick Vujicic, was born with no arms or legs simply adds to the story. The inspiration to look for, then, isn’t in the fact that one simply has a disability, but that he or she is truly impacting others in extraordinary ways.

Of course, worst of all is when the media portrays those with disabilities as inspirational when, in fact, the individuals’ lives are absolute train wrecks. TLC recently debuted a documentary on “Kenny,” the gentleman known from the Jerry Springer Show, who has no legs and walks on his hands. As the documentary showed, Kenny, a high school drop-out, caught the attention of some in show business, landing a decade-long career on the Jerry Springer Show, where he would sneak-up on guests and “freak them out” as “the man with half of body.” However, as the documentary chronicled, Kenny left the Jerry Springer show, and was living in a transient motel with his fiancée and her two children, one of whom Kenny thought might be his biological child because he had slept with his fiancée seven years earlier when she was still married to her husband, the legal father of the two children. Kenny and his fiancée’s goal was to have a paternity test, but Kenny insisted that no matter what, he would be there for the two children – and they even called him ”Dad.” Well, the paternity test came back negative – Kenny was not the father – and the documentary ends with an update that Kenny left his fiancée and the two children, and is now living with his parents.

Now, where the documentary crossed the line was in perpetually stating what a remarkable, inspiring individual Kenny is, seemingly oblivious that his life and choices are horrendous at best, devastating to others at worst – after all, how does a man of any moral fiber whatsoever vow to raise two children, have them living in poverty in a transient motel, then split? That may be a Jerry Springer episode, but it certainly isn’t inspirational, as TLC insisted.

Surely some reading this might argue that disability defines my own life story, asking the question of, Mark, if you remove disability from your own story, is there anything left to your merit beyond a guy with cerebral palsy?

It’s a valid question, and I believe that the answer is, absolutely there’s more to my life story than cerebral palsy. See, my roles – through the mobility industry, writing, speaking, and charity – aren’t centered so much around my own disability, but are ultimately centered around serving others. Yes, my disability adds to the story, but it’s ultimately my larger efforts in life that create what I hope is a legacy of positively effecting the lives of others in many different ways. And, that’s how we should all assess the merits of our own lives if we end up in the public light in any way, where we candidly ask ourselves, Am I being acknowledged solely based on disability, or because of the larger merits and accomplishments in my life? Again, individuals like Nick Vujicic are great examples, where disability, by nature, may be part of the story, but it’s not the whole story – and I strive to follow their leads by making my own life less about disability and more about making a difference in the world around me.

Indeed, I applaud mainstream media stories about those with disabilities, but only when they’re warranted. I don’t want to read about how 17-year-old Jimmy’s smile cheers up the neighborhood as one with a disability – it patronizes and reduces Jimmy to less than his potential, as it ultimately does everyone else with a disability. Nor do I want to see absolute train wrecks with disabilities presented as inspirational, making the inexcusable, excusable based solely on disability.

However, what I do enjoy seeing are stories like when 17-year-old Jimmy, who happens to have a disability, gets a summer internship on Capitol Hill – that’s a great news story, as it would be about any 17-year-old with such accomplishment. Put simply, let us find inspiration in stories about the sum of one’s humanity and accomplishments, not the singularity of disability, where stories don’t patronize but honor.

Author: Mark E. Smith

The literary side of the WheelchairJunkie View all posts by Mark E. Smith