Crumbling the Clay that Surrounds Us

By Mark E. Smith

An acquaintance recently emailed me a “day-in-the-life-of-a-disabled-person” video. Of course, I watched the video, and what I saw was a gentlemen with a severe disability getting himself up in the morning – bathing, shaving, and dressing, then catching a bus to work. Then, in the second half of the video he went through his day at work, returned home, went for a swim, had dinner, surfed the web, and went to bed. Put simply, the video showed the gentleman living a strikingly average life, just with the physicality of profound disability mixed in.

What intrigued me about receiving the video, wasn’t the video, itself. After all, it was about as boring as watching myself get ready for the day. Rather, what intrigued me about the video was the forwarded chain of emails that accompanied it, containing countless people writing of their amazement at the gentleman’s day-in-the-life abilities.

This email chain got me thinking: How is it that some still remain so seemingly culturally ignorant toward others that they are somehow enlightened by a video of a guy with a disability doing what everyone else does? I mean I understand that some folks aren’t familiar with those of us with disabilities, but if one sees a man or woman who has a disability, isn’t it a given to assume that he or she has to bathe, eat, and work like everyone else?

The answer, as insane as it sounds, is, no – some people have no understanding that those with disabilities live lives just like everyone else, where bathing, eating, and working are givens. Surely, those with severe disabilities have to overcome more than others in daily tasks, and I argue that those with disabilities cannot live mediocre lives if we wish to succeed, where we must pursue higher levels of education, and push ourselves above and beyond the everyday standards of others if we wish to make our ways to any success in the world at large. But, it shouldn’t be a surprise to anyone that we do mostly the same tasks as everyone else when it comes to daily living.

Last year, I wrote a piece about the television reality show, Little People, Big World, where I expressed my annoyance at the Roloff’s monologues that explain the obvious, such as that those of short stature have difficulty reaching high cabinets – and I noted that television viewers must be smart enough not to need such explanations. However, I received a host of emails stating that I was, indeed, giving the viewing public too much credit, that some folks truly are clueless when it comes to acknowledging those with disabilities and the lives that we lead. In this way, reading the comments on the forwarded email video that I recently received confirmed that notion, where some on the email clearly had no prior understanding that those with disabilities can lead independent lives.

Yet, I don’t believe that disability, in itself, has any influence toward provoking ignorance in others toward how we live. Truly, anyone who’s impressed that those with disabilities get up and go to work in the morning certainly has an overwhelming lack of cultural awareness as a whole, likely clueless toward countless cultures and backgrounds. After all, no one is going to exercise understanding and enlightenment toward people of all races, ethnicities, religions, orientations, and backgrounds, only to exclude disability. Truly, if a person is genuinely astounded that someone with a disability can get himself up for work in the morning, there’s no doubt that that person is uninformed about many others of diversity, where disability is simply one topic among many that’s escaped his or her radar screen.

However, we can’t fault such people – that is, we can’t presume that ignorance toward disability is an offensive act, or that others being impressed by our abilities is patronizing. What we should do is treat others with the same understanding the we, ourselves, seek, and give them the opportunity to learn and embrace us in their own time. Sure, some will watch such a video of the gentleman with a disability getting himself ready for work – or, even see you and me going about our days – and give no thought to the experience of others. Yet, some will watch such a video, or see you and me living life, and it will truly serve as an education, a lesson that they take to heart, an understanding that people are more the same than they are different, a realization that they will apply to many others of diversity, well beyond disability.

I heard the story once of an ancient Asian clay monument that sat in its location for centuries. The government sought to move the statue, needing to make way for a city’s expansion. With the statue being clay, they didn’t want to damage it in the move, so they called in the best cranes and operators, striving to delicately lift the monument. Unfortunately, in the process, the clay began crumbling, piece by piece. And, what was exposed underneath the clay astounded everyone: A solid gold core. The outer clay was simply a facade, where no one had ever sought to look at what was beyond it, leaving it’s true value unrecognized for centuries.

As people, we’re often quick to not only hide behind our own facades, but also to go through our lives oblivious to the tremendous depths of others around us. In this way, what I found truly remarkable about the gentleman’s day-in-the-life-of-disability video, was that he was generous enough to expose the intimacies of his life to others, and as illustrated through the forwarded email chain, others were receptive enough to learn from the video, to ultimately see past the clay, to recognize the gold within each of us.

And, that’s the answer to my question of, when will some people stop being so culturally ignorant toward those with disabilities – that is, when we, as those with disabilities, are gracious enough to forgo our facades and welcome all others into our lives, presenting them with invaluable opportunities to learn.

Sounds Of Success

The White Stripes are a cutting-edge band that creates some of the most complex, loud rock-and-roll music that you’ll ever hear, filling stadiums with bigger-than-life sounds – and, it all comes from only two people, playing a guitar and a set of drums. “Because we’re so limited, we have to be creative in what we craft,” says Jack White, guitarist, lead singer, and song writer.

Disability experience can prove a lot like playing in a two-man band, trying to compete with bands of more members and instruments. At what point, though, as the White Stripes prove, do limitations breed inspiration and success, on levels where one finds a way to turn seeming restrictions into liberation, where a lone musician can rival the power of an orchestra?

In many ways, limitations encourage focus, and focus is what’s needed to achieve success – all of which often takes place within the realm of living with disability. You’ll encounter those with disabilities who have experienced tremendous hardships, yet have achieved tremendous success in many areas of life. Indeed, it’s a seeming contradiction that hardship and tragedy – facets of many disabilities – allow or foster success, just as with two musicians filling a stadium with sounds that can only come from multi-piece bands. And, yet, time and time again, limitations – disability and otherwise – provide the focus needed to achieve success.

When Richard Pryor recently died, his widow said that Pryor’s multiple sclerosis brought clarity and comfort to his life that he’d never known, where disability encouraged him to look at himself and others with a new perspective, one stemming from understanding rather than angst. And, limitations have such an affect on many, where they’re often encouraged to see what they may have previously overlooked or ignored. Limitations, in fact, narrow one’s field in a way that clarity and focus are all but demanded, where one inherently maximizes potentials. In Pryor’s case, his focus was more demanded by circumstance than idealism, where he was always running, chasing drugs, chasing women, trying to flee his demons. However, once he literally couldn’t run anymore as a result of multiple sclerosis, he had to focus on himself and those within his family – his physical limitations created emotional focus and growth. In this way, Pryor achieved greater success as a husband and father under the limitations of his disability than previously without, proving that limitations can inherently empower.

If limitations can inherently empower, then even more remarkable success is achievable through consciously knowing how limitations can foster success. In working with many wheelchair users over the years, I’ve witness countless specialty control needs, where a user must only use a single body part and movement – a finger, foot, or tongue – to control his or her powerchair, where with focus, creativity, and tenacity, expansive mobility is achieved. The same conscious effort that goes into maximizing physical abilities – working with constraints to achieve success – applies to so many aspects of life. If a stock broker, for example, applies the same creativity, tenacity, and foresight to maintaining portfolios as one does in addressing one’s disability – identifying potentials amidst limitations – he’s bound to succeed. The key to success in all aspects of life, then, is to consciously focus on the sole areas of opportunity that you have at any given moment, and work them to fullest potentials. If your disability relates to your legs, what can you achieve with your upper body and education? If stocks as a whole are tanking, where is a sector of potential growth to enhance your portfolio? If your relationship isn’t fulfilling, in what steps can you identify that will improve it? There are ingredients to life, ones that are never constant or equal – and, it’s in assessing the ingredients in your life at any point, recognizing what can be created, that breeds resiliency and success – it’s where single instruments are played to fullest potentials.

For the New Year, all of us – disabled or not – have the chance to view our limitations as opportunities, where we can fully assess the potentials that we have, thriving and empowering our roles. You may have a few less instruments in your band than others, but play them with more skill, talent, and creativity than most others – and you will fill stadiums with the sounds of your success.

Rolling Resume

Scroll EBay under the search term, “wheelchair,” and every couple of weeks you’ll see someone trying to auctioning off the back of his or her wheelchair as advertising signage, where for very little money, a marketing marvel will roll around with your business’ slogan on the backrest of his or her wheelchair. Brilliant – as brilliant as the guys who auction off their foreheads, or the women who auction off their cleavage.

Or, is it?

There’s a difference between auctioning one’s wheelchair, and auctioning one’s forehead or cleavage for advertising. If auctioning one’s forehead ties into a Howard Stern stupid stunt, and auctioning one’s cleavage ties into our culture’s adage that sex sells, where does using auctioning one’s wheelchair as advertising land as an object of entertaining value in pop-marketing?

It doesn’t. What auctioning off one’s wheelchair as signage does tie into is historical need, where those with disabilities have been portraits of charitable empathy, not empowered earners. In this way, auctioning one’s wheelchair as signage is a step backward, conjuring images of times past, eras where wheelchairs, signboards, tin cans, and street corners were acceptable means for those with disabilities to use in raising money via panhandling.

In fact, the view of auctioning off the back of one’s wheelchair as a cry for charity isn’t lost on the mainstream, as the media wrote about a recent auction, “He is looking for a sponsor for his wheelchair. Finding a sponsor would mean a great deal, as it would help him to finally be rid of SSI.”

I certainly can’t know why any one individual tries to auction off one’s wheelchair as signage – maybe it is charitable need, a stupid stunt, or good ol’ greed, all without an understanding of the harmful portrait of disability that it paints. Nevertheless, whatever the reason, I say keep the sign, but change the message and venue. I say that such wheelchair-draped signs should be printed in bold with one’s education, skills, and work history – one’s resume’ – where one pounds the pavement as a rolling endorsement of employment for oneself and others with disabilities, advertising strengths, not portraying weakness.

Then again, don’t settle for just a sign on the back of your wheelchair – make your entire life a rolling billboard of your education, employment, and empowerment, where the only backer that you need to succeed in life is yourself.

Segregating Segregation

Timmy and Jimmy are at the forefront of disability thought.  You know, Jimmy and Timmy, the two disabled characters of the foul-mouthed television cartoon, South Park – truly, they’re among our community’s most profound thinkers.  As the story goes, Timmy, who uses a wheelchair, and Jimmy, who uses crutches, were upset at Christopher Reeve, whom they didn’t view as a real “crip” because he wasn’t born with disability as they were – disability, according to Timmy and Jimmy, is a culture you’re born into.

This episode hit home with me not only as among the most daring topics – as with mocking Reeve’s struggles – but also as among the most true, bringing to light the common but rarely discussed lines of dissention within the disabled community among those born with disability and those whom received disability later in life.  As one born with a disability, and active among all forms of disabilities, I have been acutely aware since a young age of how the disabled community divides itself based on the origin of disability.  The standard fallacy of those born with disabilities says that because you received your disability later in life than at birth, you haven’t lived the full disability experience, you’re not a full-fledged member of the disability club.  On the flip side, the fallacy is that those whom received disabilities later in life don’t see themselves as “one of them,” those with so-called true disability, because they’ve lived a “normal experience” to a given extent. As a result, you end up with a divided community where our brothers and sisters face each other, stating, “You’re not one of us,” or “I’m not one of you.”  

On a similar note, South Park is not the only television show of recent to bring to light division among those with disabilities based on how we view each other.  Christy Smith, a hearing-impaired competitor on TV’s Survivor, has undergone a barrage of bashing from the deaf community for not complying with a code of conduct that many of her deaf peers follow regarding using sign language at all times.  Smith, a graduate of Gallaudet University, chose to read lips and speak by voice on the show, rather than using sign language and an interpreter.  On the web and in the press, many members of the deaf community have labeled Smith as somewhat of a trader for not staying true to her deaf culture’s form of communication.  Again, we see the phenomena of segregating each other within the disabled community based on status policies that we create.

Beyond the interpersonal, organizations within the disabled community set up similar fractions, striving to support one particular classification of disabilities over others.  If you use a wheelchair due to paralysis, one group will assist in your ADA complaint. However, if you use a wheelchair due to any other disability, you’re not eligible to use their services – you need to go through a cerebral palsy, or muscular dystrophy, or multiple sclerosis, or other disability-specific organization to get assistance. And, let’s not overlook wheelchair sports like quad rugby or events like United Cerebral Palsy sports that have both implied and formal rules stating that you cannot participate unless you have that particular medical designation.  You may have all four extremities affected by disability or have a disorder of the central nervous system, but unless you’re a card-carrying medical member of this or that “disability” group, you’re not allowed in the door.

If all this sound absurd – that is, differentiating others based on origin or type of disability – it is.  In my mind, segregating others based on differing disabilities is as absurd as Timmy and Jimmy labeling Reeve as not really disabled, or members within the deaf community calling Christy Smith a trader for using her communication abilities as she wishes.  No matter our disabilities, or how we handle them, for the most part society doesn’t distinguish among us – lack of access, employment discrimination and similar “mainstreaming” issues impact all of us.  Why, then, do we discriminate against each other, why do we divide amongst ourselves when we face common struggles?  

There are many possible answers to such a complex question.  From the interpersonal, maybe it’s hard to witness your own struggles in another person?  From the organizational, maybe resources are so scarce that groups feel a need to protect their own?  And, from the societal, maybe we struggle to maintain our culture while still striving to be part of the mainstream?  Indeed, in the grand perspective, all of these aspects play a role in division within the disabled community.  However, ultimately, individual action supercedes all, and we have an obligation to support others with similar situations to our own, uniting and creating a better life for everyone.