I came across an Atlantic article the other day in which I found this quote that set off a string off thought:
“A fallacy of modern medicine is that anything less than perfect health or complete recovery is failure, or at least concession.”
It’s not just a fallacy of medicine, but of society in general. I felt this myself as a freshly disabled person: “my life is now over”. This line of thinking stems from the belief that life can only be truly fulfilling if you have a body that is at your beck and call: complete control of the physical.
This bleeds into our ideas of love as well. This is the way love supposed to go: you and your partner start from square one with bodies untouched by infirmity. Decades go by, and then your bodies start failing, and they fail together as you age, with both of you ending up in rocking chairs on the porch in a matching pace of mutual breakdown. But what do you do when your loved one already has a fucked up body to begin with? This is likely the reason my last relationship ended; he probably felt we could never even really begin because our bodies were mismatched from the outset.
I think another reason it never began for him is because I, and my body, do not exist in a single place from which a relationship can be launched. That is, I am physically stable, my health is not in danger -- but neither am I “cured”. To many people, I live in a limbo that never comes into focus as one or the other: I am neither healthy nor unhealthy. I am reminded of the first book I read about disability after my accident – hell, the first I read about disability, period: Crip Zen: A Manual for Survival by Lorenzo Milam. Now that thirteen years have passed and I have read numerous books about disability since, I look back with relief that Milam’s was the first one. Crip Zen was written by an ornery man who has post-polio syndrome, and it is completely unapologetic in its beautiful and cleansing rage, its unwavering, precise insight into the interaction of the disabled with the able-bodied. He cuts no corners with his calling-out. In short, it was the perfect book for me. It was in this book that I first came across the term liminal: to be in an intermediate or transitory phase or state.
In the eyes of society, I will spend the rest of my life in a liminal state. People don’t know how to react to me; is she sick or is she healthy? Do I pity her or treat her as an equal? Should I be overly gentle and patronizing with her as someone who is convalescing, or should I bypass that urge and instead interact with her as directly as I would any other, healthy person?
Which brings me to this question: why do we treat “unhealthy” people as less-than to begin with? The comments section of a New York Times article about the choice of whether or not to share a cancer diagnosis with your circle of friends and family illustrates that people are well aware of this issue. Several people wrote that the reason they chose to not share their diagnosis with more than a few carefully chosen people was that they did not want everyone else to start treating them differently. They did not want the pity, the discomfort, and the patronization that would surely follow.
Do these reactions to those who are dealing with health issues stem only from fear, or is there something else at play? I believe there issomething else at play, and that is consumerism. What is the engine of consumerism? It is the drive for perfection. How else would they get us to keep buying stuff? It’s so important for us to be perfect, we’re told, that we must spend money on the pursuit of it, even if we don’t have much to spend to begin with (just put it on the card!). We invest so much in this never-ending chase…and when you are heavily invested in something, the last thing you want to think about is the chance that you’ve been doing it in vain.
Perhaps one of the reasons people react to severe disability with discomfort is because its very existence puts the lie to the consumerist myth of the attainability of perfection. There is no product I can buy that will put me back on the racetrack now; I have been “opted out” of the drive for perfection. There is no amount of money I can pay that will fix my broken spinal cord. Yes, Virginia, there actually is a state in which nothing they can sell you will ever help you get back into the game.
Finding myself exempt from this race for perfection has both ups and downs. On the downside, I never see myself represented in commercials – it’s like people like me do not exist. On the upside, I never see myself represented in commercials – it’s like the heavy yoke of corporate and media influence has been lifted off my shoulders.
Being removed from the scope of consumerism has helped me turn inward and remember my humanity -- my wondrous, fragile and flawed humanity. My life is not, as many see it, a consolation prize; disability is a facet of being human, not a removal from it. After all, if the only whole, healthy person is the one without imperfection, then we are a world of broken people. And that’s just what the commercials want us to believe.
I am slowly returning from my writing hiatus; I've been crippled by a broken heart for a while, and I'm now finally emerging from my cocoon.