For the past two years I have been unable to hold down full-time – or even part-time – employment due to a progressing, chronic medical condition.
I am disabled.
Last year I officially switched my major to ‘pre-med’. I was determined that despite my progressing disability, I could still find a productive way to give back to society; nail down a vocation that would both utilize my goals and by stimulating my intellect, help me to constantly form new ones. I was looking for a short-cut around my own physical limitations. I was looking for a way to avoid a particular type of conversation.
Half an hour into the first Chemistry lab of the year I knew something had to change. That night after I returned home from a grueling 15 hour day at school I found myself in an all too familiar situation.
Everything has to change.
My performance that semester ebbed with every single twist and turn; my body was totally unreliable and equally unpredictable. Biology labs were particularly hard on my neck, which had over the summer become increasingly painful and unstable. Even though I was suffering extreme chronic pain, fatigue, depression and frustration, I ended the semester with a B and two A’s – I had to drop two courses and missed about twenty hours of Lab time.
However, the real tribulation wasn’t the physical pain I felt, and the personal frustration that comes with failing to meet the standards you set for yourself (standards which you use to define your self worth). The problems started piling up when unanswered questions were given answers; my hand was forced.
In a vain attempt to sever the emotional ties, the decathat, I began to shrink away form social interaction, adumbrate of what would become a long period of loneliness, fear, and derision.
It was bad enough that my friends and family didn’t believe me, and bad enough that society and my school didn’t believe me, but it was being tasked with revisiting my own failures and limitations that made life seem briefly unbearable; I was forced to show people examples of my own short-comings and failures. I had to show them why I was unable to perform at one hundred percent. That process is at the same time the most familiar, and the greatest threat to a disabled persons sense of well-being.
I remember one night in the summer, after getting in a fight with my mom I rode my bike down to a park a few blocks from my house; I needed some fresh air. Along the way I made a de-tour, stopping at a grocery store; I hadn’t any idea what I wanted to buy, I just knew that I had to get something. It was as if I was subconsciously stocking up supplies in preparation for a big storm.
I ended up back at the park a little while later. While I was sitting there, an open knife in my hand, completely determined to end my own life, a man slowly walked by me. This particular park isn’t much of a park, but more like a small open field; there is a play structure and tennis court, but they are tucked away at one end, leaving a vast open veld which makes up most of the ‘park’ itself. I watched as this guy somberly trudged through the grass. I imagined what he was thinking, burdened by his stupor and loll. I pictured where he was going, who he was and where he was from. I wondered if he was a potvaliant character, ready to strike at any moments notice. He looked a little haggard and worn-out; he was dressed a little alternatively, bearing the unmistakable signs of someone who really enjoys ‘metal’ music. I imagined he was poor and unsuccessful. I thought his family probably deserted him because he never amounted to much, and so after a night of binge drinking and regret, he was making his way back to his mold-infested, one-bedroom basement apartment. That the greatest thing he had accomplished in his long, drawn-out life, was probably something most people would be eager to hide; or at least they wouldn’t lead a job interview saying ‘well, I own the entire ‘Between the Buried and Me’ discography, and I’ve been to every Atreyu concert.
Anyways, to make a long story short, my mom pulled up in our van. I cried and told her about the guy I saw and how afraid I was of becoming someone like him; an unsuccessful loaf who can’t hold a job and lives in poverty.
At that moment in my life I was so enamored by this ‘ideal of success’. An incongruous standard of life, impossibly hard to define. I didn’t know much, but I did know that I didn’t want to be like that man I saw walking through the park. I knew that at all costs, I had to be successful.
As a disabled young adult, I can tell you that the picture the media paints about fairness and equality is an illusion. T.V. shows like Glee and Degrassi portray a utopian world where even though there are obstacles in life, in the end everyone gets what they want. The leading roles are played by stunningly beautiful actors and actresses. These are shows were even the ugly and downtrodden house some ineffable quality of character, or else some hidden yet profound talent or skill.
Our world is nothing if not complicated.
I think most people want to believe that life is governed by some principle of fairness; in the end good triumphs over evil, and the shy guy gets the girl. The only way our world can be fair is if we make it fair; no one is going to do it for us.
We are forgotten.
This fall I finally made the choice to apply for Disability. Although I knew I would probably only receive eight hundred and fifty dollars a month, I would have all of my prescription medications paid for (except for a minimal two dollar co-pay, a co-pay most pharmacies wave). This was a big incentive for me since over the summer I had to add three new (and very expensive) medications to my pharmaceutical arsenal. I treated it as ‘supplementary income’; I distanced myself from it.
Again I was faced with the embarrassing and demeaning task of proving that I am an incapable, inferior human; remembering all the while that at the end of the tunnel isn’t actually a bright, white light, but a tribunal that 50% of the time denies new applicants first applications… and their subsequent initial appeal. Not only do I have to prove I am disabled in more ways than one, the more ways which I can prove, the more likely the provincial government will be to approve my claim. In a sense, I am asked to reduce myself to my absolute worst qualities; the worst case scenario becomes the only scenario… depressing?
To be perfectly honest, I didn’t really think too much about it at first. I had the end-goal in sight: an income and health coverage – approval. The small stuff that happened to occur in the interim didn’t concern me too greatly. I tend to be phlegmatic.
It seemed that only during the immediate affronts to my worth as a human being was I extremely uncomfortable in my own skin. I tend to quickly forget things that are bothersome or cause great emotional distress; who has the time and the faculties to absorb and evaluate every attack on one’s sense of self-worth?
Only now, after having ‘completed’ my first semester back at school (where I only registered for one course) am I thinking back on the way I was treated with a more analytical eye.
Over the course of the last year I have suffered bouts of extreme elation, and extreme depression. I have fought and lost, and fought and won battles against my own body; my own disease – the former of which being the greater of the two. I have had to mentally digest the reality that I can no longer take my dog for a walk that lasts longer than five minutes, or stand on my feet for longer than ten.
I have had to re-learn how to live.
Having to define myself by all the negative aspects of being disabled completely unravels all the hard work that has gone into proving to myself that I am not a useless failure; that the meaning and value to life is not found in what a person can do, but who a person is… by what being ‘human’ means, collectively. The only thing worse than having to prove to others that you are disabled, is having to do so for a group of people who don’t know you from Adam. The inculculation eventually wins over.
Picture asking a paralyzed man to fill out this questionaire:
Check Yes or No for any of the following:
- Can you climb a mountain?
- Can you run a marathon?
- Can you climb a flight of stairs?
- Can you do fifty jumping jacks?
- Can you do thirty squats?
- Can you win a potato sack race?
Funny yet sadistic.
Our society requires that its disabled continually prove that they are disabled. Our society forces its disabled to literally define themselves in terms of their disability; a definition, mind you, based completely on stereotypes and stigma, and butressed by A definition which is in no way exemplary of the many types of disability. But if any able bodied person hears a disabled person leading a conversation by stating what they cant do, they accuse them of ruminating and giving up.
Our western culture has a profound stigma and distrust towards the disabled. This impulse extends to all minority groups: homeless, racial minorities, economic minorities. Some believe it stems from our imperialist and colonialist western culture. Others say that fear drives our judgemental attitude towards the disabled, or the homeless, or the poor; we are so afraid of becoming likewise that we need to distance ourselves. Even if doing so requires profound moral deprivation.
We need to be far-sighted.
Nietzsche said that our society will crumble around us unless we abandon our traditional approach to morality; a fear based morality will only serve to hold us back. To the able bodied, the rich and the white Protestants, such notions are not only provocative but downright socialist. I’m by no means a communist, a political theorist, an anarchist or a conspiracy theorist. I am a disabled young adult capable of maintaining a cohesive string of thoughts, imbued with a deep sense of responsibility to pursue a solution to the biggest problem facing my sense of self-worth.
That problem is long and complicated and adumbrative; the solution must therefore be even more so. I’m not interested in the social and political implications, or the economic and religious ones either. I don’t care about the reasons or causes of others behavior towards me; no matter how valid. The only thing I care about can be found right here, right now; I’ll let the more qualified, sedulous, and more skilled put all the pieces together.
In essence, I’m a reporter; coming live to you from the front-lines. And although I’ve lost the ‘joie de vivre’, and the aplomb that were once staples of my personal character, what I have to say is no less important: when we demand from our disabled constant reification, we undermine the very core of their sense of self-worth. What we are telling them is that we don’t believe them, that they are a drain, and most importantly, that we are better than them. By using a black-and-white white which pits disabled and abled against one another, our government constantly reinforces an entirely incomplete definition of disability; presented as the ana of all things ‘medically decrepid’. It reinforces the idea which lingers in the back of every disabled persons mind; that voice in the back of your head that tells you ‘you’re not good enough’. The irony is that the very system which is supposed to determine whether someone is ‘disabled’ reinforces the very problem that they are supposed to fix. The narrative they paint is at the same time one of extreme inequality and one of extreme immiscibility.
Now, although I admit that I don’t know the solution; I have a few ideas and, more importantly, a few hopes. But they don’t know that there’s a problem. And the most insiduous threat to knowledge is the illusion of knowledge.