By Mark E. Smith
It’s a beautiful fall, Saturday morning in Midtown Manhattan, among the few times of the year when the city slows down on tourism, after the summer and before the holidays. Theatre tickets and restaurant reservations are easy to come by, and the winter weather has yet to set in. And, my daughter and I are glad to be here, our weekend getaway.
In fact, I’m hustling to write this because wheelchairs aren’t of much concern to me this morning. I’m thankful that my power wheelchair liberates my life and will escort me around the city with ease today, as it has liberated my life every day for the past 34 years, starting when I began using one around the age of six. But, there are a million other interests on my mind this morning – namely enjoying a day in the Theatre District with my daughter. Indeed, wheelchairs are blessings – and the liberation they bring is astounding – but my use of a wheelchair certainly can’t steal the spotlight from being in Manhattan with my daughter this day – nor can my wheelchair distract me from the countless other joys in my life on a day-to-day basis.
Working in the mobility industry and delving deep in disability culture as a writer and advocate – and merely as a guy who uses a wheelchair – it always disheartens me when I see people so hyper-focused on their wheelchairs as an object that it takes a destructive toll on their lives, removing them from the many potentials around them – a mindset not based in disability, but more so based in traumatic emotions.
Interestingly, a few weeks ago at Medtrade – the mobility industry’s trade show – a salesperson asked me a fascinating question that ultimately ties into where wheelchairs, when over-emphasized, destructively fit in the lives of some: “We’re in this convention center full of fantastic technology and truly caring people, and yet some consumers who we serve seem to despise every product and all of us,” she noted. “Why is that?”
“They don’t truly hate the products or us,” I replied. “Rather, they dread what we and everything in this convention hall represents – their frustration toward disability overall.”
Unlike my realization that my wheelchair is but a liberating tool to pursue the entirety of life, for some, the fact is, disability-related products like wheelchairs aren’t about technology, but psychology, where they transcend mechanical parts and become manifestations of negative emotions. After all, there’s little tangible about disability – you can’t literally see or touch genes, cells, or nerves in everyday life – but a wheelchair is unmistakably touchable, there’s gravity to it. And, many resent the reality that a material object like a wheelchair seemingly represents: Disability.
We sometimes see a denial of disability directly linked to the literal denial of using a wheelchair. Parents of children with disabilities will sometimes put off getting their children wheelchairs past the age of when they’re ready, opting to keep them in “mainstream” strollers till the age of four or five, and sometimes even longer. For these parents, a wheelchair is so representative of disability that they can’t bring themselves to physically place their children in wheelchairs because they’re not ready to fully accept that their children have disabilities. We rationally know that a child is no more or less physically disabled whether seated in a stroller or a wheelchair (and most children could, arguably, gain greater independence by using a wheelchair instead of a stroller); yet, in the minds of some parents, the tangible nature of seeing their child in a wheelchair declares disability once-and-for-all – a declaration that they don’t wish to face.
Similarly, some adults with progressive disabilities will avoid mobility products as a way to psychologically avoid fully acknowledging disability. Despite a lower quality of life due to a lack of mobility or a risk of falls, some adults simply refuse to use a wheelchair, thinking that it defines disability, rather than realizing that their actual medical conditions define disability (and, again, the fact that they overlook is that a wheelchair would make them more mobile, not more disabled).
Then, seemingly to the contrary, but of the same troubling emotions, there are those who hyper focus on their wheelchairs, dwelling on every little nuance, day in, day out, where it consumes their thoughts. Using a wheelchair is so emotionally wrenching that their feelings are transposed onto the wheelchair – and they’re not letting any of it go. Their wheelchairs become the central focal points of their existence, where a sense of loss of control over their bodies becomes a compulsion to control their wheelchairs. Their whole lives revolve around thinking about their wheelchairs, where room for other interests and interactions diminish.
Of course, some take an unhealthy over-personalization of using a wheelchair and project it onto others. If a therapist recommends a wheelchair for a child, parents can sometimes see the therapist as an enemy. How dare you try to make my child more disabled! And, there are adults who will tell you that everyone in the mobility industry is evil. Again, it’s reflective of some taking all of their emotions surrounding disability, and projecting them upon anyone or anything associated with a wheelchair. In their eyes – subconsciously or otherwise – a wheelchair is disability, and anyone associated with it is the enemy. And, some individuals simply can’t get past such self-destructive thinking surrounding disability – that is, they need a scapegoat, and the wheelchair is there.
Unfortunately, none of these outlooks are healthy, and all are trauma-based behaviors – that is, from denial to obsessive compulsions, these are unhealthy reactions toward disability. A wheelchair should physically liberate us, but not emotionally restrict us. A wheelchair may relate to disability, but it shouldn’t represent disability. And, a wheelchair may enhance our lives, but it shouldn’t consume our lives. It’s such negative projections upon a wheelchair – which is merely an inanimate object – that can dramatically debilitate the lives of some, whether avoiding a wheelchair or obsessing over its every nuance.
The fact is, a wheelchair is ultimately a small part in the grand scheme of a healthy life. Yes, it’s a vital tool that we can’t live without, and let us feel blessed by its liberating roles. But, when a wheelchair is at its best, it’s not in the forefront of our lives, but in the background – the vehicle that gets us to the far more meaningful aspects of life like education, employment, family, friends, and community service.
Let your wheelchair quietly be in the shadows while the entirety of your life shines in the spotlight. Sometimes we all have to remind ourselves that a wheelchair is just a wheelchair, and living our lives unencumbered by it – physically, emotionally, and mentally – is where true liberation is found.