While doing my Ph.D. the guy below me was studying the 17-18th century idea of “Terror” and the attraction of ‘freaks’. He had read Pepy’s own handwriting of his journey to London to see ‘freaks’ and what he had physically felt. That was the obsession then, that it was believed that certain things: like seeing a human who was all twisty or didn’t look “human” (meaning like regular Able Bodied) produced an INVOLUNTARY reaction – goose-bumps, heart increase, sweat, nausea, etc. And to this day, I think many people believe that the reaction upon seeing someone physically different, the NEED to gawk, to stare, to turn the person into a spectacle, is one which is involuntary. That when the people, having seen behind the veil of Merrick hounded and chased him, desperate to see while simultaneously nauseated were acting out of “instinct.” That they were not to blame, they were only acting as anyone would.
And truth be told, if you go to a restaurant where a person with severe physical disabilities or disfigurements is there eating, the actions of the patrons and the raised level of conversation buzz from “Look over there” to opinions is not that different really than the crowd in The Elephant Man.
After I grew up, I saw myself in the film as the Anthony Hopkins figure, the “sensitive” one who could recognize that yes, there really was a human, and maybe an interesting human underneath. I could challenge myself to look BEYOND just the scientific curiosity of it. This of course made me the hero, the soul who WOULD go and be around Helen Keller or WOULD try to talk to those other poor unfortunates who admittedly were not like ME, were not ever going to be like ME, but like many people on earth, like the woman who mutters constantly at the supermarket, should be treated with the kindly tolerance and trying to reach out. I did not know yet mine was an elitist privileged view.
You could say that I am viewing my late teen and 20’s in an overly harsh view, as I was an ASL translator (though I left, because of the politics but also because as a translator I never had a voice of my own). You could equally say that I am being overly kind. For people at that age often view themselves as special and more sensitive or brilliant or open and take a weird sort of pride in that, indeed a possessive pride in thier 'special tolerance.' I am sure I displayed all the subtle arrogance of that.
But living in LA, one was trained not to stare, since in my work I served movie studios, Leonard Nimoy, Vidal Sassoon (yeah, he was a real guy), Ray Bradbury and some of the exiled nobles from the WWII period, Baronesses and Dukes. So not staring was something I was trained in. But as someone in retail my greatest desire regarding a wheelchair user, or something with a speech difficulty or a physical impairment was that they go away. I knew how to take care of the thousands of people I interacted with from neurotic studio types, to arrogant rich bitches who would drive their Jag up onto the sidewalk before waiting for us to come and open their door. I did not know how to deal with these customers, those with disabilities, and not knowing what they would want or how I could appropriately assist them made my skin itch, and so I wished they would go away. Go away and leave me with our normal customers who carried around porta potties for their child to take a poo in front of the register: “Training during this time period is crucial!”
Only now in my 30's, world traveled, my aura of accomplishments and experiences around me, I was a person of significance. Until 10 months ago, that is. As the Freak Show Barker in The Elephant Man states to his audience before the unveiling, “Life is full of surprises.”
First went not just the life of the elite able bodied, but the expectations of those around me. That I would want to leave the apartment seemed to amaze people. That I should try and continue a type of life I was used to: training, writing, and interacting. This determination seemed not only absurd (and offensive) but many tried to explain to the incredibly dense person I had become the unwritten laws regarding attempting to pass as AB, or do AB activities as a non-AB. To get the permission to do boxing took weeks of planning and meetings, doctor’s notes, as well as the individual approval of at least four different people (three of which I have still never met). Even today, though I regularly drop into the Y, people who don’t recognize me by sight faces blanch when they pull up my card screen which has explicit warnings that I am not to be allowed to do any activity in the building without specific written permission.
Second went my identity, which, despite corsets and mini-skirts, degrees or life experience, was reduced to the box inside the head of 99% of the population: wheelchair bound, disabled. Disabled is a word which has no past, no future, only a continuous state of being. I was to forever be whatever the person I was interacting with thought was ‘disabled.’ The idea that I had held a job amazed them (much less over 15 and owned two business). The idea I traveled amazed them. The idea I traveled while IN a wheelchair offended them, that I must be breaking some international regulation.
So, my physical passions, my love of sports was reduced at best to “accommodation” (which anticipated only a hollow shadow of the sport I was attempting, if my attempts were not simply allowing some form of pathetic denial), to spectacle. But I was far too obsessed with proving to myself that I was capable physically of SOMETHING, to worry too much or get hurt for more than a few days or weeks over another comment or obstacle put in my way. I knew I could not be AB, yet, I did not want to become what everyone expected of me. So in 10 months I did: disabled indoor rock climbing, wheelchair rock climbing (yes, up rock inclines), wheelchair jogging, a 5K, boxing, tennis, sailing, wheelchair gym workouts, badminton, and was stopped for liability reasons from kayaking. I was also taken to the hospital from more than a few of the above sports.
The boxing, which I continue to do, is in decline, doing 1/3 the time, weaker and having slower neural response times. It looks like the window on an exhibition bout is closing. The fact that I WANT to demonstrate the sport against an AB person has had virtually everyone I have physically talked to respond in a violently negative fashion. That I am turning it into a spectacle (and myself into one as well), no different than women doing cat-fights in hot pants. I will say that I don’t give a flying fuck, but that is not true. Do you think this is the way I want to be seen, perhaps for the final public time, as an athlete? No. But I must accept that every time I roll into class, and every time I am rolled out to cool down or get oxygen, the eyes follow me with pity and maybe concern. But no one there is thinking, “That could be me.” No, now I am the one who draws eyes as my body starts to spasm and shake without control.
When I went to badminton, even on the second week, when I had proved I could play and 11-12 people where there, filling all three courts, I could not get anyone to play with me. I asked, they made excuses. After 40 minutes where every person in the room knew where I was, yet none would play with me, the Y director of the badminton just went over, pulled two people out of two doubles games and said, “You’re playing us.” That video from the monday was of my first badminton match. If not for the empathy and determination, not of me, but of the director, I would still likely not have played. It turns out that our team winning while the other able-bodied people watched the match allowed me into a second match, and a third (with comments of “I watched you, you’re pretty good!”). I had proved, but only with the determined help from others, that I was to be allowed on the court.
As time progresses, my ability to find sports within my limitations will be difficult. And to go out head held high, month after month, with the watching eyes, knowing inside that I am now a weak imitation of even my disabled self of months ago...that will become increasingly difficult. People will and have already said and done things which make me feel that I am sullying the tennis court; that this sport or area should be left for the REAL athletes. Or just the people, who walking stop and stare, and stare, while I struggle after a tennis ball, or transfer onto a weight bench, or wheel into the gym. I am not a spinal cord injury; I will not be strong, or have endurance, I am, I like to say with a smile, “a degenerate”, a neuro degenerative.
Currently, I am pushed to boxing, I box for 25-30 minutes and I am pushed home, where I suffer, waking for pain pills and ice through the night, my heart erratic, and on pain pills for the next 24 hours. Some day that will become 15 minutes, or ten minutes. One day it will be fifteen minutes of badminton or one game of air hockey. I am an athlete, and the only standard I hold to is my own. And if I can only do ten minutes a week, then ten minutes a week I will do. Yes, how people look at me, how people act toward me makes a difference, but I must not let it stop me. So now in the movie of The Elephant Man, the person I see myself as is Merrick, who in final defiance yells, “I am a human being!” In less than a year, I am already so used to being shoved down or aside, and I am looking into a future which holds only more of the same. What veil can I use to hide my secret self from the gawking crowd, when my slurring twitching self is a spectacle in itself: even the trailer for The Elephant Man offered scant hope: “But if you come to know him, you will begin to see beyond the perversion of his form.”
Knowing who I was, and how I acted, do I deserve better? Yes.
Acting like an idiot at 20 doesn’t mean the world must continue forever as idiots. As a side note, Ian says that I bruised two if his ribs at our last bout (oops, sorry!), but he seemed proud of me for doing it. Ironically it is from other bloggers that I learn to not give up my identity, those who are chronic and often fatigued yet continue as artists, as photographers, as writers, as bakers, as workers in various crafts. It is from this that I will continue to be true to part of who I am: Athlete. No, not spectacle, not “plucky”, or “trying”, or “giving it a go.” Athlete.
I was thinking of maybe ping pong next. Ironically, I have been invited to join kick boxing (she says she’ll adapt it). I have a rapid neuro degenerative disease. I am STILL an Athlete. I will not give up to those doubting voices inside of me, or the voices and eyes from the world around.
To quote from Eliot:
We shall not cease from exploration
And the end of all our exploring
Will be to arrive where we started
And know the place for the first time.