I am supposed to be working on the Ouch piece and on a story due on the 30th and what am I doing instead, I have made a significant breakthrough on something not due for a month: a paper on my monstrous body for the 'Feminism for Freaks' anthology which I found listed on Questioning Transphobia.
I cannot say I am in love with the title nor so much with the use of the word “monstrous” since I have recounted in my earlier posts some of my experience with being dehumanized because of my size, before other things came along. Being called “It” or “That” a few times a day is never really big ego boost, such as “Look at that!” when you stand up on the bus. But that wasn’t really what I wanted to talk about in regards to Monstrous. And the emphasis on tall women, on women in non-traditional sports was ones I had already written about in this blog. And by the reactions shown as far as I could tell, feminism couldn’t give a flying toss that the same sports that empowers women gives them eating disorders. Or how the more atypical the body shape and sport, the more overcompensating of “traditional” feminine stereotypes; the boxer who in interviews emphasizes how much they love high heels (some irony that the interviews read very much like those of some transitioned females, whose interviews are held up for mockery/attack as ‘not the views of real women’, is lost apparently).
Anyway, what I realized over the weekend which was only emphasized to me today in my interactions with the BC wheelchair sports association, the paraplegic association, and others is that the most monstrous thing about me right now IS both my disease and its manifestation. It is not the disfigurement which terrifies people but the normality of my appearance. I was told by an SCI rehab worker that “anyone would be threatened” by my condition: the complexity, the speed, the extremes and the variation. I was trying to get classification today for doing other 5K or 8K events in a wheelchair but the BC wheelchair sports association, even the person who does the assessment was leery of what to say or do or to allow me to be classified at all, because I do not fit into 'typical' classifications. On the one hand I can be stood up for a short period of time with assistance (though I may lose voice and left arm function). Which means I am not a “quad”, but I cannot feel several of my fingers, torso, feet, lower legs, use my left leg and during a race lose the ability of independent truck function as well as wheel open handed later in the race (to avoid breaking fingers I can't feel), or just use my thumb and forefinger, which apparently is a higher functioning quad style of wheeling. I don’t have micro motor skills, I require oxygen while racing to stay conscious, I require first aid and cooling upon finishing an event. I lose speech function while exercising, I may temporarily lose consciousness, may not have a great deal of blood or even a pulse in my extremities. I don’t sweat. And while autonomic control is a PART of classification, it is not the primary part, yet to classify me as able bodied, according to the paraplegic association seems absurd (they said, not me). As they pointed out I have to carry WITH me about seven to tens pounds of oxygen, cold packs, ice vest, neck coolers which others do not. Also, since I have to focus on the oxygen to stay conscious, I will have neither the consistency of control of my extremities nor the ability to use the oxygen I am sucking in (since my diaphram doesn't really work) to go faster. Because of the way my muscles cannot rebuild, I cannot exercise or train more than once or twice a week. This and other complexities and the fact that I have limbs which turn green, purple, red, yellow or blue for no apparent understandable reason bothers people.
We are used to humans being explainable. This person cannot breath because of X, this person will have problems with Y, this person can use their hand in this way. So when I come along with a hand that sometimes works okay-ish and at other times is completely paralyzed and that's when I use my elbow to roll my wheelchair then it 'sounds' or 'looks' or 'feels' wrong, and people get scared. This isn’t the way things are supposed to go, people aren’t supposed to pass out mid sentence and then stop breathing and then come back 20-30 minutes later and laugh about it because it is just an every day thing for them. But it is. I got a taste of that when I read Yanub talking about dislocating her shoulder and how common it is but how hard it is to find people who won’t freak out and will put it back in place. And I realized that the THOUGHT of being around someone whose joints did things that my entire life had taught me was NOT how joints worked scared me. That I did not want, as much as I LIKE Yanub, to put my hands on her dislocated anything.
And I suddenly understood the odd laughter from the guy at the parapalegic association when I asked him why the BC wheelchair evaluator asked if I used back tippers. And he explained that was an indication of ability to keep balance. I said that I just got the wheelchair shop to adjust my chair like they did a few weeks ago (and will need to do again) because when I passed out I would fall backward on my head, seemed a better solution than tippers. I mean tippers are...well, not so beautiful looking. And he made a funny, choked laugh and said, “You say that like it is so ordinary (about passing out).” And I said, well, it is, I mean, it was 3:00 pm and I had passed out at 1:30 pm already. And he made another little uncomfortable laugh. I said that the more I exercised, the longer I was going to live and so doing it where people give me cookies seemed to make sense, but I didn’t want to threaten the way things were done or make people think I was some Able Bodied person trying to take over, I am just doing my thing and trying to get what motivation I can. But I can't do it without classification (I am told), and the people who do classification are SCI or deal with SCI and are leery of me. And he said, “just your condition is intimidating” and I guess saying that I am dying and trying to motivate to live longer which is the truth isn’t what the Wheelchair Sport or the SCI people are used to hearing either (or really WANT the people they classify for sport to say: "I want to do a 10K in a racing chair so I die a little later...and hopefully not this race").
So that is my monstrous body, that I can smile for pictures three minutes AFTER I was in a first aid tent for 30 minutes and had stacks of ice on my groin and couldn’t speak and was on oxygen and later I smile and look so, NORMAL. I looked good holding up Mr. Soot. And yet, in a few hours I would be in moaning pain which continues to now, I am weak and pass out, I have problems breathing, swallowing, talking, finding words, using my left arm and yet, I look Normal (or within "What humans should look like if somewhat healthy" classifications). As my somewhat scared night worker says, “This is life and death, and yet you keep making jokes.” Well, I could sob all the time if that helps. If I did limp, or when I do have dropsy on my face, or drool that I am understood, understood as something 'different'; it is the going from dirty jokes about the pope at the film shop to turning green and flopping about on the floor which is so monstrous, so un-human. That the basic aspects of what it is to BE human, to have a beating heart, to breath, to have blood pressure, to have oxygen convert, to process food, to breath in without thinking, to make sounds with your voice – that all these can be taken away at a moment, and some not returned, all in doubt. That is disturbing….well to everyone but me who is so used to my hand turning purple.... (as it is right now, actually I should do something)
(I took a short break to put on the oxygen), that what it means to BE human, to remain HUMAN is called into question.
These are the same questions when AIDS occurred and people died of disease no one had heard of in a human, it terrified people. Why, because nurses had never seen a lesion or someone having problems breathing? No, because no one had see THAT MANY lesions. And when I am covered with bruises, my faces spotted from burst or sunken capillaries, I think it will be the same with me. What terrifies everyone from doctors, home care and even people who are supposed to be helping me get out there (exercise is good - can you believe the BC wheelchair race people asked me "do you have a doctor's note to race" - hahaha!) is that what is in me, what is part of me, this disease doesn’t act like a “normal” disease. I get problems that no one has heard of, and all that can happen is that it gets noted in the book, the one my GP has. It doesn’t make me monstrous, but it is outside what we know as female, outside of what females in their 30’s who are articulate construct as. This isn't simply a body constructed for dependency (sorry, but mine ain't). I am not visually always in need. I am not a condition with a name which is understaood. Yet, I am not different than you, I just am losing what you never think about, that which is autonomic.
There is no great truth or end. I wish people didn’t fear so much, but I understand why they do – because, “It’s not supposed to act like that!” Well, says who?
3 hours ago