Monday, April 28, 2008

My Monstrous Body

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?


yanub said...

Elizabeth, it's very interesting to me that you find the notion of regularly dislocating something or the other to be so, um, icky. And here I am, always thinking that my minor dislocations (and they are pretty minor--mostly subluxes of varying degrees) are nothing of note. I have it in my head that my body works normally; it's everyone else who is weird, what with their ability to stand in place and push themselves up steep hills without a real struggle. I'm given to these delusions: I also think I'm tall, which my daughter, who is near 6 feet thinks is hilarious as she pats me on the head while I stand eye level with her boobage.

You are ever so right about disease and disorder not being understood as disability. Ain't it strange that even disability is pegged with markers of normality--control, reliability, constancy. And the idea that you should maybe not race because, what, it could kill you? When sleeping in the wrong position can kill you, what the heck is a race that it should be avoided? You are rather past even spoon theory. Maybe more into spork theory. You've only got one eating utensil, and it's just going to have to do for all your needs, even though it's made of plastic and makes for both a lousy spoon and fork. But life is a banquet, so attack it with your spork. And laugh as you try to eat the spaghetti with the damned thing.

Linz said...

*gentle hugs*

Btw, I tagged you - don't worry about doing it if you'd rather not. I just wanted to get more people to come and read your beautiful, thought provoking blog.

Gaina said...

I once went to the qualifiers for stoke mandeville games when I was a kid and they classlified me by looking at my spina bifida scar and said I was 't-12', but having done more research into what each 'juction' along the spinal cord means in terms of nerve function, I think I'm a bit higher. It certainly wasn't a very considered or scientific way to classify me.

Maybe you should ask your doctor about the actual level at which your 'message's to the nerves go hooey and that should give you the 't-or-l-whatever' classification (hey, it's the least they can do after you let them tazer your feet!).

The beauty (or otherwise) of tippers depends very much on the wheelchair manufacturer I think. I have some which look pretty good, but they are utterly useless because if I have them down it means no-one can help me up kerbs, because they are just that bit too low to the ground.

My chair tips easily and I nearly fall out if I hit the smallest bump because the seat depth is too shallow for my body (even though I'm a small person) so that may be the same case for you.

I think able-bodied people are so unused to your candour because most disabled people don't talk about how they are affected by their condition because they either don't want to be fussed over (me!) or bring people down, because then people stop hanging out with you. It's rare to find friends who will acknowledge that you aren't going to feel so good from time to time and can be caring but not smothering. Especially when it feels you have different things going AWOL every day!

Lack of consistency in the affects of nervous system malfunction can be really frustrating, because as you say you're not 'one thing' that people can get their heads around.

I encourage people to ask questions, especially children (who are fascinated when they see me in shops) because the more people ask the more enlightened they will be the next time they meet a disabled person, possibly less scared. The kids are even more important to inform because they are the ones who will grow up to be adults that don't stare.

Lene Andersen said...

And yet again, you make my brain grow. Never thought of it quite like that and although I had other plans for today (damn you!), now I'll be off in a corner thinking.

p.s. What dirty joke about the pope?

FridaWrites said...

For some reason I don't mind when people write of themselves as monstrous (I write similarly sometimes), but it does bother me when nondisabled people write about disabled people as monstrous. There's a book I've been meaning to blog about called Schulyer's Monster, written by her dad. He calls her and other kids "broken" and there's the ever-present monster metaphor that makes me really uncomfortable. It's difficult for me to express the difference between the two--maybe it something about insider perspective or feeling versus objectifying?

cheryl g said...

Am I just wired weird because I can't say that your condition intimidates me? Sure you turn odd colors, make unintelligible noises and occassionally flop a bit but so what? You are still you, still the amazing being I am privileged to call Sis.

Neil said...

Hey everyone, Beth doesn’t fit into any particular pigeonhole! Gee, is this news to anyone here? Umm… NO!!!

Beth: I don’t see a problem with the wheelchair sports association not being able to fit you into a category. After all WE all know you’re special! And that’s just fine with us. Besides, fitting in would be just too easy – it’s not your style, dear. 

I can understand the association wanting you to fit within a range so they can categorize you. It’s the same as weight ranges for high school wrestlers, and it would give you someone approximately equal to compete against. What they don’t know is that you defy categorization. That’s THEIR problem, not yours, and if they can’t find a space for you in their system, maybe their system needs another space for “racers without racing chairs but who are more competitive than average” or some such name. There’s certainly a marketing opportunity for them though: a new class of occasional or recreational racers who don’t do a lot of training. They could encourage more wheelchair users to become more active (are the Participaction folks listening?) and to enter races where they’re not expected to compete against paralympic champions.

You’re no monster, Beth. The only things monstrous about you are your best qualities: the amount of passion, humour, determination and eloquence within you, your desire for inclusion, your capacity to find challenges to butt your head against, AND your ability to make crazy ABs like me keep thinking.

Size alone does not make a monster. So you’re tall and don’t fit most clothing shops or statisticians’ graphs. Well, neither do I and neither does gentle giant. Nor do the two ladies I met 25 years ago who were both well over 6 feet tall. And would anyone DARE call the model Iman a monster?

You might make some people nervous with your height; but that’s their problem; and you probably make people nervous with your candour. Again, that’s just you, and dealing with it is their problem. Anyone who takes more than a few seconds to learn anything about you will realize that the only scary thing about you is that Elizabeth McClung might be the one truly unique person they’ll meet in their life.

I’m sorry, Beth, I’m running off at the keyboard again. I get one idea flowing, and can’t stop others from following.

May I suggest you need a sticker on your chair that says “This thing hauls ass!”? Or would that be considered improper to suggest? Oops, too late!

Zen hugs to you and Linda. Wish I lived closer so I could get to know you both.

Dawn Allenbach said...

I'm gonna post my own blog entry at Roadhog in response to this. *giggle*

Blank said...

Most people stammer for a few moments when I tell them I've had a stroke. I'm in my early twenties and appear to be perfectly healthy. (The "paralysis" in my affected side generally only affects my ability to open jars!) Your post is bang on - people don't know what to do with you if you don't fit into a neat category. At least my disability is something that can be fairly easily understood and, despite my age, given a frame of reference. I make a point of encouraging questions, so that if the person ever comes upon it again, they won't be left at the same loss.

I hope they found a way to categorize you in the end! It sounds like a great way to help keep you going and like something you enjoy.

Elizabeth McClung said...

Yanub: well, after my first 30 or so I am sure I would have no problem with dislocation. I too have this thing that everyone else has an odd body and can't they tell that the heat is about to make them pass out?

I like how you condense down what I was flailing at trying to say, it is the control, reliability and consistancy which we crave. Yes, I am sort of beyond the "impairment" theory (was the social) and a few others, like it is like, "You have 20 spoons, but if you use an unknown number, todays spoons AND tomorrow turn into roaches that bite you! Oh dear! The number was 12 and you used 12, now you must simply pay the price!"

Linz: Thank you, I will try and do that tomorrow - HONEST, along with one about books I owe from before my trip.

Gaina: I think here they do a "provisional" which is a sort of "look at you and go" - you're a XX, and then a "formal" which takes like a day or more and two specialist and can only be done in Vancouver under a full moon on a day starting with W. I did offer the reports and MRI and they said they didn't need that. Okay!

Since I have a high back, low dump and straps keeping me in my chair doesn't tip me out except...well when racing downhill and a piece of pavement eats one of my casters.

I understand what you mean about keeping it quiet and often I just keep upright on a bus or somewhere public and then sort of wheel with an elbow around a corner and fall over. The difficulty is that when you turn colors much like part of the Willy Wonka film, it is pretty obvious when something in wrong. So pain I joke about, and the rest, well, I try to joke to keep people calm.

I would ask kids to ask questions if I had like....answers. haha.

Lene: Sorry, very sorry, and you had to try and spend and hour to direct your "helper" to get the post too!

I have a moth ball in my left hand

I have a moth ball in my right hand

What have I got?

A very happy moth!

Frida: Well you did you the online name of Frida which talked a lot about pain and perception in different venues. I too do not like the objectifying from non disabled people of "this is normal" and "this is freakish or monstrous!" - though they have been doing for hundreds if not thousands of years (Pepy's was obsessed with it).

Cheryl: however amazing I might be, Linda tells the night workers that I scare HER, or rather my condition does so yeah, I guess that makes you a bit odd - nice and calm in an emergency but odd!

Neil: Well thanks but I find a problem if the can't put me in a catagory becuase then I can't race except as "able bodied" which everyone who had seen me do my tricks (about half the people) though was a laugh and a half.

I hope I will be in the "has a racing chair but don't expect any fantastic times out of her" class along with, "She can go out once or twice a week...if she is lucky!"

Actually some days I would like to NOT have that capacity to be a magnet for people who I end up butting heads with, but they just keep COMING!

Yes, it is funny, but only people who seem a wee insecure or insecure in thier authority find me at all threatening, the rest find me pretty funny or odd or interesting. And I do try to be polite. I wrote, "Thank you" and "I'm sorry" on the sheet at the first aid tent. I mean, I was taught my manners.

Zen to you too Neil, it would be nice to meet you (and maybe the rest of the clan?)

Dawn: Thank you for that post, I really really appreciated it, and I recommend everyone to go read it over at her blog (just click her name and then Road Hog). A completely different viewpoint!

Blank: Yup, I could see how you could break a few conceptions and catagories with "I had a stroke" - do you get the "You're too young" or "you're too pretty" one - ARG! Sorry, I guess the medical condition didn't used the "who is voted off the island" version of chosing who to attack.

I find that sometimes I forget how much *I* didn't know about this condition and I though I knew ALL neuro conditions and my doctor is going "You have Reynaud's" and I had NEVER heard of it and now I asssume everyone know what it means when my hands look like eggplant gone squish!

rachelcreative said...

Wow. Great post.

It seems that the wheelchair sports association needs some kind of loose recreational type category. There's no classifying all those 'able bodied' runners in 10k races into exact sub-categories by ability (Prone to Blisters, Gets Stitch after 1k, Flaps Arms As Runs, Can't run Without Ipod, etc).

You need a category only to get race organisers to SEE you. The association should embrace opening up more sport to "normal" wheelchair users for goodness sake!

I'd have to be in the "needs to be pushed by someone else" category myself.

Caoimghe said...

Interesting post (and blog I'm now flicking through).

I've been approached recently about getting into wheelchair fencing, and I'm in mixed minds about it. Hearing that there are ability tests is definitely a putting-off factor, but that's because my experience of people testing my ability has always related to benefits officers trying to prove that I'm putting it on!

I have ME, and am luckily only an occasional wheelchair user (though a very regularly mobility scooter user... the problem is I can't self-propell, otherwise I would be in a wheelchair a lot more often). So I would feel somewhat fraudulent in wheelchair fencing, even though I'm assured there are competitors who walk to their chair. I also fenced for many years before I got ill, and very occasionally do something that approaches fencing now (if standing mostly still trying not to collapse until the match it up, and poking counts!)

I get that look as well, the "but you're too young" disbelief.

Thanks for the post.