Wednesday, May 30, 2007

Beth's excuse for body snatching; "I'm not sick, I'm a HISTORIAN"

Just so you know, after the last post, I’m not sitting in the dark, chewing on a hangnail and thinking morbid thoughts about myself while planning how I’m going to play “The Unforgiven” at my funeral. That’s not the type o Goth I am. Not when I can go to the Titanic exhibit like I did on Monday and think morbid thoughts about OTHER people dying. The roving Titanic exhibit complete with the genuine artifacts recovered from the ocean bottom are at the local museum. Personally I find the whole thing in dubious taste, particularly the recovery and display of the “stewards jacket” which has the name of the guy with the note beside it; “did not survive the disaster” a.k.a. – look at this jacket with the White Star logo which we took once the guy inside had been eaten by organisms at the bottom of the ocean! There are even pop-up cards you can buy in the gift shop (attached to the exhibit!) showing divers looting (sorry, I must mean, historically examining) the wreck. It simply makes me want to wheel on over to our own Victorian Cemetery with a few shovels and do some historical examination of the period myself. I wonder how locals would take it if I set up a special exhibit of things I “found?” (And who says “body snatching” is a lost art?)

As for the exhibit, it was okay, a little missing on info, and high on drama (“once in the water people had 15 minutes to call for help before dying of hypothermia. The air would have been filled with the cries of the dying”). Luckily one volunteer was Mr. Obsessive who knew just about EVERY person who lived or died and how that happened and gave the example of a White Star worker, a baker, who while completely drunk, literally stepped off the stern just as it was going under, swam around for over two hours and was picked up....still drunk. He bragged that he “never got his hair wet.” Anyway, enough about that, if you want to know about Titanic, you can buy one of the several million books which seem to have been published on the subject. By the by, the Titanic, in terms of civilian naval casualties on an ocean liner is about 9th or so; the M/V WILHELM GUSTLOFF lost estimated 9,400 people (including almost 9000 civilians and another 162 wounded soldiers) in 1945 compared to Titanic’s 1,508. True, they were german civilians killed during WWII, which would bring up other certain issues (like the deliberate firebombing of civilians towns) while the Titanic is a much more politically free disaster (and full of rich people and cool pictures of staircases). In case you would like to make your own morbid exhibit, German deep sea divers found the wreck of the Gustloff three years ago.

Yesterday I was busy with doctors and test, seeing an Internist specialist who seemed to know the right questions to ask and getting me even more tests which included my getting 16 blood tests later that day. Knowing my EXTREME needle phobia, you can imagine how fun that was (I was heavily doped; I suggested since they needed so many samples they just siphon it into a jug and take the samples from that. The tech said, “Oh, we have a comedian.” While I peered in a puzzled doped haze at her wondering why everyone though a sensible suggestion was comedy?). So after the blood tests I slept...a lot.

But I will be back, hopefully tomorrow with deep.....eh.......stuff to blog about. I just thought it better that people didn’t think that I was moping about, hiding under black sheets and getting maudlin. My gothic retreat into cobwebbed delusion and madness should be firmly placed under “coming attractions.”

Sunday, May 27, 2007

Sex and Death; getting too little of one and too much of the other

People say sex and death make a good pair; for me, it is only when I am getting the first and someone else is getting the second. Or rather, yesterday morning I woke to find the right half of my body paralyzed. I was surprised and irritated because how exactly was I going to get to the bathroom to take a pee? But also not so surprised at all. Like remembering a car accident, over the last few days, I had been replaying over in my mind that moment a few days before when I realized my right eye had become partially blind. The paralysis? After several hours of sleep, except for some residual numbness in my arm and hand, the nerves on the right side of my body came back…this time. I have to talk about the word now that no one except my doctor has ever used around me the last few months: Dying. Yes, there is a decent chance that whatever I have will kill me, and not in the nice going-to-sleep with a drug overdose I used to fantasize about but rather a horrific and painful death. Or as my doctor said to me three days ago, “Everyone dies.” I replied, “Yes, but some of us prefer it not to be so quickly!”

My present and future are this: Either I am dying or I could get better or things could remain the same. Next week they are going to do a map of my eye so that in a few months they can see what vascular and/or neurological degeneration has occurred. For some reason, I don’t think things will magically go back to being as they were (email me if you need me to break that down for you in a blow by blow). No one more than I would love to find out it has all been a horrid mistake or a peanut allergy issue, but I think that is very unlikely. Two nights ago we talked to the son of a man who is “classified” as having MS, simply because after nine years, with a creeping paralysis moving up from his feet which has now reached his abdomen, the doctor’s still don’t know what it is. We told the son how we were still in the first six months and some of the funny, “ha-ha”, things doctors had diagnosed me with like heavy metal toxic poisoning. It turns out that his father’s doctors had thought that one up too and so removed all of the fillings in his teeth. A year later they admitted it wasn’t heavy metal poisoning. “Ha ha.” And medicine is a “science.”

So yesterday post-paralysis I wore a lot of Victoria Secret. I am not sure why Victoria Secret is my armor. Maybe because I need to reaffirm how I want to see myself when I DO have control over my body. Maybe because Victoria Secret is an expensive wanton feminine luxury and sometimes you do want feel sexy all for yourself. Maybe we just do what we need to do to go on without knowing why we do it.

A couple days ago my holter heart tests came back, ten weeks since the previous one. The short story is that my heart is getting more out of control: 6-9% worse. I can still stand, but a few minutes of light footwork in the evening caused 25 minutes of tachycardia. My doctor who used to be a cardiologist specialist said, "It seems evenings are bad for you." Yeah, good thing they only come every day.

Even with a slightly numb right hand I went for a 5.5K wheel along the coast, racing Linda as she jogged (she won....and hills suck!). No, I’m not just randomly self destructive (okay, I am, but not in this case). I raced because my body can't deal with heat. The reason it can’t deal with heat is because my body and heart are no longer pumping blood to the micro-capillary system. Simply: I don’t sweat anymore. My body is sacrificing what it thinks it needs to survive...for the short term. However, the longer it does this, the more and more easily I go into shock, have heart SVT’s and fever. So I have to force/shock my body backing into using the micro-capillary system a couple times a week if I want my system to last long enough for more tests to be run on it and if I want to stay out of the hospital. I have to push myself hard enough to sweat, even when doing so will lay me up a few days a week.

I am suffering. Nothing can stop that though industrial pain killers help. But that is how things are and no magic pill can make things “as it was”: I cannot be an athlete; I cannot determine how many hours I will be awake on any given day or how much pain or medical problems I will have. Simply getting my assisted breathing every day costs Linda money (my bottled oxygen consumption has doubled, so much they deliver lots of bottles to my door weekly), to enable me to move independently costs Linda money, there is money for pain and other medication, money for home aids, money for taxi’s to go to doctor’s appointments, hospital visits, tests, time and money to help me eat and drink and help me put on clothes. Money so I can stay in the apartment instead of going to the hospital. And money to finance whatever scheme I come up with to motivate me another day, another week. These are costs unlikely that I will be able to pay back. Linda accepts that, so I must try to, and go on.

I found a pleasant use for my purse from Demonia, which was too beautiful with its velvet interior to simply dump my junk in. So a bear was volunteered to be “vampire bear.” Now, when I go out, I put my money in his paws so when I pick up a Mocha at Starbucks, I prop up the coffin on the counter, lift the latch to let the lid swing open (creak!) and take the money from his paws. It helps me convince people I am friendly and well adjusted. “What’s in the coffin?” I was asked as I rolled in one store.

“A friend,” I told them.

Once I could see again last week and the fever was gone Linda and I went clubbing; it was 90’s night at a club called Lucky’s (a girl who does go-go dancing atop a speaker for the club recommended it). This was my first Canadian club experience. I couldn’t wear my special “club” outfit I ordered for my birthday, because my new chair with the clothing guards is being held in Canadian Customs (due to the pornographic nature of wheelchairs, I am sure, though the box from Slash N Burn and the one with skulls on it from ARSENIC came through fine). It is this PVC gloss full length skirt and body cincher with PVC gloss bikini bra as well. I, being the modest PVC cincher type wear my Lip Service hoodie with it. So that being out I had to go with this “make do” Tripp corset and armwarmer set with thigh high tights with bows and my blue knee high stomper boots from Demonia. Wheeling down to the club a woman came out of a restaurant, looked at me and said, “Wow, Hot!” which seemed what I was going for. As for clubbing, once we took the floor, everyone else left, which is fine, as we practiced things like the wheelchair yo-yo (Linda pushes me off, I use the momentum to do a very fast spin using just body lean and then roll back to her), also we did a strange version of the Jive where I ended up whipping around the entire club floor holding onto Linda at the centre as my axis, while I used my free hand to pull wall bars, bar tops or anything I could get my hands on to go faster and faster before doing a spin out. It was pretty fun, particularly after a long island ice tea. Amazing how we could do stuff like that in front of 60 people and not have a single person watching; indeed studiously NOT watching us. Too bad because after being laid up, post-fever and facing my own mortality I was pretty horny and after a few of those long island ice teas was ready to make out with anyone including relatives. However, my only offer came from a guy when I was waiting in line for the loo, which is one of the few times a line falls dead with me (I guess hearing “You’re pretty sexy” from an EMT personnel loading me into the ambulance or from someone holding my hair while I vomit would be my two other “no go” times).

So you see, I am not exactly lying down with a lily on my chest. Though at times the pain, the hours under the oxygen mask, my entire consciousness reduced to Linda’s hold on my hand makes the days disappear quicker than I would like. Let’s face it; this isn’t the life I wanted or choose, this wasn't in the pamphlet: I never smoke, I never did drugs, I rarely drink, I exercised, I spent years (almost decades) in education and degrees. I don’t want to accept even the possibility that I won’t hold another job, or that I might look back on these months as “the good days.” I didn’t get my shit in order to go down like this. But that's the way it is. So I cried this week for the first time in months. I haven’t give up; I meet an specialist internist this week about my adrenal and thyroid, I have a 24 oxygen test. But I can’t fight for “survival” anymore; because that is out of my hands. I can fight to remain and claim an identity for myself outside of this disease. Some days that will be rock climbing only using my arms, an inch at a time; some times that will be corsets and kitty cat ears. And some times it will be morbid jokes told around a breathing mask. An experience like this strips and rips away your masks, your dreams, your futures, and your identities whether you want it to or not. Stripped down, I am still a fighter, even when no one understand that looking reality in the face can be just as much of a fight as spending two hours to shower, eat and dress so you can go outside for 40 minutes before going back to sleep. And sometimes fighting is looking at reality in the face and ignoring it anyway.

Yesterday Linda and I purchased our medical supplies. First an indoor portable air conditioner so that we can seal off a room and stop me going into heat stroke during the next three to four months. And second was a wacking big purchase at the Victoria Secret online sale, including a whole series of VS skull and crossbone bikini’s (in three different colours). Once those arrive, I can finally wear those mini skirts in the wheelchair; I'll be matching from my headband down (and ready for those EMT guys and girls!).

Wednesday, May 23, 2007

Beth runs away, gets stuck up a mountain in a wheelchair, comes home in ambulance

When running away from home, it is important not to get too distracted. Was I in a devil-may-care mood? Well, I was off to the third oldest cemetery in the city to “see my friends”. After a few hills I saw the turn-off to Moss Rock, the closest mountain crag park we have near where I live. I took the turn off. I rolled slowly up the pavement leading up to the park until eventually the pavement ran out and a small ravened gravel path ascended. Did I stop? No. It took me about 20 minutes to make the first 10 feet. Then the path got steeper. In fact I had to put my oxygen and backpack on my feet and legs to stop from flipping the chair backward as I leaned forwarded every time I pushed. I would struggle to do a few inches and then lock the wheels and rest. At 60-70 feet up, I was well and truly stuck. I didn’t have the energy to make the last 30 feet or so but nor could I see any way to actually get back down. So much for running away; I called Linda and told her I was stuck atop Moss Rock. She wasn’t in. Then it started to rain.

I decided after another long time that I should make an attempt to go down as it was now dark, no one was going to come up the rock and I was on my own. Plus, the more it rained, the more slick the trail and my tires and handrims would get. So I marked how far I had gotten (for the next attempt), and started to slide sideways down the hill. I did not believe I would make it without tumbling end over end because a) I didn’t exactly go UP the hill with a plan to come back down and b) much of the time, due to gullies, one of my wheels wasn’t touching the ground at all, on a very steep incline. On the uphill wheel, I pushed sharply while I pulled just as sharp on the downhill wheel, flipping my wheelchair around in a 180, much like a skier flipping from side to side when going down a mogul hill, then I would lean uphill and let the chair slide sideways downhill until I felt ready to flip it again. To my surprise, I reached the bottom of the hill still in my wheelchair (take that Motion Specialties for being three weeks late delivering my wheelchair...see what I am putting your rental through!).

The long pavement leading up to the hill was too steep for me to be able to slow down enough to avoid hurtling into traffic at the bottom. But by this time, I had little fear, or brains and veered off the road willy-nilly going through grass, gravel, up people’s driveways and pretty much anything that would slow me down as I zigzagged down the hill. I am surprised I didn’t bounce off a telephone pole, though I might have and don’t remember as when I arrived at the bottom, again, strangely, still IN the wheelchair, I called Linda to let her know that I wasn’t stuck atop Moss Rock. I decided to wait 15 to 20 minutes just in case she got my first phone message but not the second and was on her way here now. Then I would continue onto the cemetery as planned...in the rain. However, by this point I felt fairly poorly (tranlated: totally crap) and decided to “rest” by curling the top half of my body up and draping it over my legs. Some time passed. A person driving home stopped to see if I was “okay.” I told them I was and I was waiting for someone to arrive. So much for my career in acting as they did not believe me at all, and then at some point (when I am in a lot of pain, time seems to move very slowly, people however move very quickly) other people arrived, and a doctor. They tried to move me and I fell out of the chair. The next thing I know there are TWO ambulances pulled up. Now I was trying to convince a whole crowd of people that if they just dragged me off to the side of the sidewalk, I would be fine (perhaps more convincing if I could have sat up under my own power).

Ambulance #1 was two “classic” EMT guys (like “classic jerks”) who said things like, “We cannot leave you here because then someone else will call us and it will be a further waste of our time.” They took a pressure cuff reading a few times because they couldn’t find a pulse in my extremities. They made the pressure cuff so tight it was painful enough to wake me up a little. So I asked the EMT guy to do it some more, as the pain brought me a bit out of the nausea, stupor and general “la-la land” I was in enabling me to talk. Once the EMT guy realized I was asking him to “hurt me so I can wake up” he took off the cuff and left in a hurry – apparently not the “right” thing to request. Linda by now, had called on my phone, the EMT talked to her, she arrived when I was trying whispering to one that if they just let me lie on the ground for a while I might be better. EMT Ambulance #1 was very against it but EMT Ambulance #2 brought out their rig and let me lie on it – which started a big of an issue as EMT guys #1 reminded EMT crew #2 and Linda that they only have “so much time” for each call. The second ambulance crew put me in the back of their rig, which is when I found I didn’t have any body strength for independent mobility. They told us that as soon as the first ambulance was gone, they were going to take us home since as we all agreed I was either Adrenal, Thyroid, Electrical, sympathetic nervous system or neurological and non of that was going to be treated at ER. Also, as I reminded them, being a friday night, I am sure there were plenty of drunks out there who needed them. (they told me I was their first "non-drunk" call)

So, I wheel away from home and am brought back in a police car (that would be my dream!), no in an ambulance, almost as good. Once inside, I find that not only can I not move, my right eye is mostly blind (it is like a gauze is placed over it, so I can’t read or clearly see anything). Then the pain starts. When I get to sleep after 3 am, I quickly develop a non-infectious fever to the level where I am hallucinating for many hours (I remember calling “help! Help!”, Linda remembers me yelling, “I’m dying, I’m dying!” – either way she turned over and went to sleep). See, the thing about a fever from a cold or a flu is that there are white blood cells fighting it and when they win, you get better. The fever accompanied by nausea (which the EMT says isn’t a specific symptom just a sign my whole system is messed up), means that something bad is happening inside you (like for instance, you could have an infected internal organ, it could be anything). So you ride the wave and if you wake up, then you aren’t dead. Comforting, no? That was Friday night, Saturday and part of Sunday. Later I lost sight in my left eye but now they both seem to be working fine. And that was this years' “running away from home” followed, oddly, by a bout of depression.

Friday, May 18, 2007

Disney helps me run away from home...again.

At 3 am I poke Linda.

“Wha?”

“Do we have a gas oven?” I ask.

“No. Stop thinking and go to sleep.” She tells me.

The next morning when I wake up all the knives have disappeared. Weird how things like that happen.

My annual midnight approaches and I begin preparing for the yearly “Running away from home.” I’m not sure why I “run away” once a year but I like to blame Disney. Kids in the Disney story hour and films were always running away from home and it seemed a good life choice for them.

Why does Disney have such an influence on my life choices? Well, I didn’t have much other input growing up. I mean there were bible classes, bible lessons, memorizing bible scriptures, bible games, going to a private bible school, reading books about parts of the bible and a few Disney movies and the Disney Story Hour. Considering the things the bible teaches you (IF you don’t like someone, invite them to sleep in your tent then pound a stake through their head; Of if you want to disembowel someone, or swallow them up in an earthquake, set them on fire, kill them with a jawbone of a donkey, kill them while their hair is tangled, chop them up in 12 pieces and send them as messages...I learned all that as a kid). So I think we should all be thankful that Toby Tyler and The Black Hole became more of an influence. For example I learned from The Black Hole that cannibalizing your friends or turning them into faceless zombies is BAD....and while it may work for many years eventually you will be found out.

Back to “running away from home”; a friend asked, “Do you get far.” Well, no, not usually since I tend to run away on the exact same day every year. This year, with the wheelchair, living on an island and needing to sleep every 5-6 hours, it will be especially difficult. I’ll need to get one of those suitcases with wheels and tie it to the back of the chair.

And what do I expect to happen with this annual hoboism? Well, there is the possibility of jail for trespassing; only I think that jail probably won’t be as erotic as either the L-word or lesbian exploitation movies make it seem. I also have a hankering for “shank fights” in the railway yard, except being on an island.....no rail yards. In Disneyvision memories, running away usually meant you either a) met someone like pippi longstocking and had great fun usually riding a horse b) you were picked up by a kind couple who happened to run a circus and taught you the high wire act or c) you were picked up by what appeared a kind couple who were actually bank robbers and through a series of adventures you ended up getting some sort of medal from the police. Of course you could pull the old “family hour” trick of “running away” but actually hiding in the barn/stables/old storage room. None of these really work for me anymore (or in a small apartment). In my “new” fantasy; I am instead picked up by a troupe of lesbian erotic dancers and we tour the province, as they work out how to teach me wheelchair pole dancing and I finally return, rich, muscular in unusual places and oddly flexible in my upper body with a satisfied smile on my face.

I’ll let you know how it turns out.

Tuesday, May 15, 2007

Wheelchair indoor rock climbing? Beth pays to get a wedgy.

Can you go indoor rock climbing without using your legs; is this a sport for people in wheelchairs? Well, only if pain is your deep personal friend. The rocks climbed by the ‘man in black’ in The Princess Bride were called the Cliffs of Insanity. Now that I have gone rock climbing, I think they might have been referring to the mental stability of those climbing. See, here is all you need to do, just lift the entire deadweight of your body using little handholds, often with both hands in one hold way above your head (in what I call the “classic” crucifix position) and then just pull your body straight up (nice butt shot!). There is also the two hand holds way out (in the cross crucifix position) but above your head, that can be even more painful.

After being banned from the YMCA/YWCA (long story with my face turning greenish), and with my last swimming experience at the rec centre ending in an ambulance going to the hospital, I was starting to get a little desperate for some sort of independent exercise. Somehow I found Craig X, an indoor climbing gym just a couple miles away, and better yet, only a block from a frequent bus route.

I came, I gave money, they put some sort of harness on me and I met Herb, this guy who looks about half my size and who will be making sure I don’t crash to the ground. Of course first I had to get up the wall far enough for them to take my wheelchair away. On the first wall, I had a lot of handholds and I was feeling fairly strong. This meant I pulled myself up that wall an inch at a time. Herb was very good at saying things like, “Great job” after three attempts to pull myself up an inch or two and finally succeeding. Because you can’t just pull yourself deadweight up a wall, oh no, you have to figure out a way to do it using the holds they have (one here....one WAY over there). Linda asked me on the phone afterward, “Did you have fun?” I told her I booked a session for next week. "Did you have fun?" She asked again. Silence. "Did you find it challenging?" YES. Later I invited Linda along next time but she gave me a look which said sane people don’t pay money to climb up walls.

As I inched up the wall, the dead weight of my legs were giving me the most expensive wedgy I have ever paid for (embarressing? Trying adjusting the leg strap going through your groin while 15 feet in the air with Herb asking if you are “okay” – I would be much more “okay” if this left leg strap stopped trying to have an intimate experience with me). Meanwhile this 11 year old girl I nicknamed “Spider monkey” is literally running up and down the wall next to me while her mother says things like, “Why not try the green tags up this time.....okay, now try the blue ones.” I hope my grunts and groans didn’t distract her too much. On this first wall I made it up over two/thirds, up to the blue handhold above my head in this pic before I had to come down because my heart rate was very, very high (and breathing somewhat erratic) – better to climb again another day.

After recovery, I finished with a second wall where I made about a third of the way up, maybe a bit more (it is the picture up top). I was very tired and am only blogging this now because I think by tonight and tomorrow my ability to type, or even raise a spoon with these arms is uncertain. OW! I certainly can’t deny I got a workout, and I am going back again because, hey, apparently some of the “top” climbers do these routes without using their feet (and I think they take less than 20 minutes, don’t shower the people below with sweat and avoid little screams when doing hard pull-ups). And if they can do it, I am sure I can do it too. And even though I had to be put in recovery twice and had a little oxygen, Herb says he will be the guy on the ground for me again next week.

So final note: no, I didn't tell the doctors I was planning this....doctors are killjoys; Yesterday I asked one for a note for swimming with a companion with me to make sure I don't die, his reply: "Well, I'm not sure you wouldn't die." Geee...thanks doc! So screw the doctors ‘cause I did it, I did it, I did it and you know what, I am going to do it again! Bahahahaha!

Saturday, May 12, 2007

Some Goth clothing, my lanquishing widow dress and various death scenes

There really is nothing better to a goth (even a lesbian goth) than getting a notice that the post office is holding a package for you; some clothing from Slash N’ Burn. Yes, there certainly is a pleasure in going out in your gothic attire and looking so hip that people ask about your partner “Is this your mother?” (a bonus of wearing fashions for teens). Besides finding out the dozens if not hundreds of different and exciting ways skulls can be used, there is also the thrill of the names of the diverse clothing lines themselves. Where did you get those dockers; I got them at the Gap. Hmmmm....little sad and boring, no? I on the other hand wear clothes from Lip Service, Sweet and Toxic, Morbid Threads, Arsenic, Lily and Remains, Trick Fairy, Hot Topic (of course), Kill City, Darque, Demonia, Blacklist and Tripp NYC.

Off I go in my Sweet and Toxic flying skulls t-shirt. While humans tend to either be sucked into my crip gothic fashion gravity well or flee trying to escape it, animals readily approach me, like this tabby here. Perhaps she has confused my stripped “classic” goth tights with Wicked Witch of the West leggings ala Wizard of Oz. Or perhaps she smells the lesbian on me and knows that if she got into our house she would be pampered for life. Either way, we would make a happy pair; it is always good to choose a cat with matching hair colour to yours. I go down the hill and wonder “Am I the only lesbian in the (Cook Street) Village?” I have already been disappointed twice but still hold out hope for the fit, tanned, short haired woman at the post office who plays “a lot of golf” (surely that has a double meaning?). What has arrived from Slash N’ Burn? It is a black velvet and lace corset; another one of the crip goth’s essentials. Fashion note for those attempting wheelchair gothic look: get the short corsets, as in a wheelchair you have what is called “Tip” which means you are sitting not at 90 degrees but with the seated tilted up (this has pretty horrid effects on any slight fat in the front or hips as basically you become the tube of toothpaste and the chair is trying to squeeze you forward – hence, why corsets are a good look, when your chair decides to squeeze; get something to squeeze back!).

I actually now have a personal corset shopper at Scarlett Noir. When one of the guys down at the alternative video store heard that he skipped up saying, “That’s what every boy dreams of!” (I told you they were alternative). I warned him that the woman expects the people she buys for to send her pictures of them in the corsets. “That’s okay, I upload those onto the internet already!” Errr...okay. Anyway, my shopper's name is Andrea and she deals in Tripp corsets which have a lot of variety and endurance and cost only $40-56. Tripp only deals with dealers and Andrea at Scarlett Noir (who includes a "treat" in each order - last time I got fishnet stockings!) is the ONLY person on-line selling the Christabel Victoria/Edwardian Red brocade with black lace and lace ribbon sides, I posted a pic of me wearing one in the cemetery earlier. Tripp is sized in Juniors and is great for smaller breasted women (Size D need not apply), yes you too can FINALLY have that Renaissance Faire look without having to hang upside down to do it. Andrea also seems to be the only person online selling the Dragon brocade corset pictured here. So, if you are like me and think, “Is just one corset for every day of the week going to be enough?” then I recommend giving her a call (very friendly, will send you pictures of corsets endlessly – also does stuff with burlesque for the able bodied, or for the very daring wheelchair burlesque performers). She also is sending me this cool velvet coffin handbag which has rivets so it can stand upright on its own. Not really useful, no, but it has a coffin shaped make-up mirror in the lid. How can I say no to that?

Some may wonder by this point, “is Elizabeth going crazy; has all the pain and oxygen caught up with her?” Maybe, maybe not, but either way, I am already fashion prepared! I got this full length tattered lace widow dress from Lily and Remains for when I break from all the emotional stress and spend my days wheeling back and forth in my 19th century manor house making my neurotic and inbred nieces and nephews waiting for me to die listen intently to the creaking of the boards above their heads. I figure this is the dress for lanquishing, that and my finale when I fall down the stairs in the wheelchair. Until I mentally unhinge, I will try to get invited to some classic reception so I can wear it and just sit in the corner, a mysterious wheeled gothic beauty. That way I will have people come up and ask me which movies I was in.....before the accident (I have to stay in the corner because as you can see, actually trying to move the chair would immediately suck about five pounds and four yards of fabric into the wheels). “I’m ready for my close up!” (did the spider-web nylons peeking out give it away?) I simply couldn’t say no to this dress, it even came with its own tattered lace gloves....now that is real fashion service for the gothic heading toward insanity.

After picking up my corset from the post office I headed back through the park, as lavender was in bloom (you may contest the flower at will), and I was wondering what types of garlands would do for my wheelchair version of “The Lady of Shallot.” (notice that she doesn’t stint on the fabric). I thought it fitting since the lifeguards last week interrupted my version of the Death of Ophelia (she drowned). Planning various death scenes or tragic poses is pretty good, but it is unfortunate that gothic literature doesn’t have any scenes of heroines being hit by a car in a wheelchair, since that is what happens to me virtually every day. I have to assume with people in cars, they just see something with wheels and think, “I can beat that?” I can come up with no other reason why cars constantly turn in front of me while I am going downhill (have not way to stop other than my hands…is that true of cars?), or like the truck that tried to stop me crossing the crosswalk by moving forward, threatening to crush me between his bumper and the car in front of him, and got so close, I had to take my hand off that wheel or it would have been crushed. My favorite was the car, who two car lengths back, saw me doing the slight downhill to go onto the street on the marked cross walk and ACCELERATED towards me. My shock and grabbing the wheels allowed him to pull up to the cross walk when a strange rage made me attempt to ram him with the wheelchair (note: when a wheelchair rams a car....the car wins, the multiple bones of your legs lose). He swerved away from my attempt to dent his back door and amazingly, the car behind him, tried to swerve into the oncoming lane to follow. I gave the driver my “your brain is about to blow up and your eyeballs melt from their sockets” glare. He decided to wait that whole ONE or two seconds for me to cross. But, you know, these events don’t really bother me (yeah, and the reason I am ordering throwing axes to be fitted to my chair is just a fashion choice).

While I am trying to find some nice gothic shrugs to preserve my pasty skin (hey, I worked 10 months to get that pale), I have decided that instead of pale, anemic goth girl and I going to be pale, to-die-for fashion lesbian goth with rippling shoulder muscles. The wheelchair and living at the bottom of several hills made that decision for me. As a guy passing me today while I inched up a hill muttering to myself “12 inches at a time”, said to me, “Think what shoulder muscles you are building!” Well, I have yet to come across “bulging shoulders muscles” as a plus point in any of those beauty mags (skin, breasts, legs, hips, yes, “delicate” - yes, “Bulging” – no). But then, just goes to show I am setting new trends in beauty and fashion. And to that end, I have booked a session in an indoor rock climbing gym. That’s right, climbing up an indoor rock face....just using my arm and shoulder muscles. And you thought I couldn’t come up with some sort of insane sport to do? Truthfully, this first time I just want to get high enough up the wall to look impressive when I start to grunt, struggle and run out of muscle. Doing that four feet off the ground looks kinda sad.

Thursday, May 10, 2007

Jade Sanders and Larmont Thomas: Murderers or Vegans on trial?

Can two black poor vegans get a fair trial in Georgia? The vegan couple, Jade Sanders and Lamont Thomas, were found guilty and will be sentenced to life in prison yesterday for Malice Murder, Felony Murder, involuntary manslaughter and cruelty to children for the death of six week old baby, Crown Shakur. The Atlanta Prosecutor, Chuck Boring, argued that the couple, in feeding their child apple juice and soy milk supplemented with breast milk were not trying to be vegans but had intentionally planned to starve their son to death; “"He just was not fed enough. They're not vegans. They're baby-killers.”

What happened? The baby named Crown Shakur is reported as a home birth, a water birth in the bathtub and that the parents did not take the child to a hospital because they feared they were full of germs. The child wasn’t taken to see a doctor until complications from malnutrition arose and the child died. The house, according to prosecution did not have food in the cupboards and only one container of apple juice. Does this mean the couple have no money. The father, Lamont, says they do not. The case of the prosecution and prosecutors is that the couple intentionally and deliberately starved their child to death and used the term vegan to escape prosecution. This is not supposed to be a case about whether the couple were vegan. However, in his comments, the prosecutor calls veganism a “lifestyle”, and Chuck Boring along with the other prosecutors seemed unaware of the difference between being vegetarian and vegan, lumping the two as virtually the same (Vegans traditionally only eat products from plants and comprise 1% of the US population or less) "No matter how many times they want to say, 'We're vegans, we're vegetarians,' that's not the issue in this case,"; Fulton County prosecutor however stated regarding the use of alternative milk; "Had the child received breast milk, had the child been adequately fed, he would be alive,"

Were the parents doing this with malice? The grandmother, Carolyn Thomas stated that their choice of soy milk and apple juice was based on their beliefs, “"They did what they thought was right," It seems hard to imagine a multi-generation plot of baby starving. The father stated their vegan beliefs would negate the possibility of intentionally harming their son; "Why would I do something with his body? We are against animals being murdered, why would we be cruel to him and try to do something to his body?”

As a baby, much like this one, I was deliberately NOT fed breast milk, which the prosecutor implies is a form of deliberate cruelty and starvation. This was because some doctors actually advocated this to mothers during the time period when I was born, and according to accounts I was given skim milk; this is currently NOT recommended (I was also not often taken to doctors even when ill due to religious beliefs – so for me, what happened with Crown is a sad tragedy, but it doesn’t seem particularly alien or unthinkable). However, today the feeding of infants is still hotly contested, particularly regarding vegans. Professor Linsey Allen says that children MUST have meat and are harmed by a vegan diet. She claims that a mother adhering to a vegan diet will have a unusually small child which will be malnurished. On the other hand, her research was done on human children in Africa, and paid for partially by the Cattleman’s National Beef Association. The Vegan society disagrees but has no clear clinical studies.

Was this incident incredibly unfortunate? Yes. Also because, according to their defence, the apple juice they were feeding Crown was acting as a diuretic and blocking the absorption of nutrients from the soy milk. Essentially, what they were feeding was, unknown to them, blocking Crown from getting the other food they were giving him.

I have to wonder if a jury of twelve people, faced with a (poor) black couple in Georgia, would be able to tell the difference between a sincere fervent desire to adhere to vegan (which can be religious in intensity) and what, they might, considering their own beliefs, see as odd, unusual, a “lifestyle choice” or simply cruel. Or would they be more likely to believe the prosecutors that their vegan statements were just a “ruse?” To many, a strong vegan belief seems alien. For example, could a vegan truly believe that exploitive sex trade and eating meat would be the same: “The meat industry teaches us that cows and pigs and fish exist solely to bring delight to our taste buds and satisfaction to our bellies. In patriarchal culture, the bodies of women and the bodies of animals exist to be consumed.”, or that they became vegan only through the grace of God; “It shows up around food these days too. It’s hard not to judge what other people put in their mouths. It’s not the “don’t they know that will make them fat” judgment, it’s the “don’t they know how that sausage was made” judgment. It’s the “don’t they understand how much pleasure they’re getting from another creature’s suffering” judgment. Sometimes, particularly when I myself am tempted by meat, I find myself flooded with a temporary but intense hostility to those who “don’t get it.”… Jesus calls us to live lives of love and justice. I’ve come so far in terms of working to embody that justice in my day-to-day life, in how I eat…God’s grace was poured out on me. I am no better than they, and though I can try and model a different way to think about sex and food..”

No, that’s not from the couple on trial, that from a very successful (white) professor in California. Do you think he would want his baby to be vegan? I think if I believed that passionately about something, I would consider it my duty if it did not believe it interfered with my child’s health. And I think this couple did too(no, not vegan, in case you wondered, not even close - plus my father in law is a beef farmer).

I do wish we had more of the story; were there prenatal visits, was the family doctor aware of their beliefs, or could they, like many Americans, simply not afford a doctor? And if their house had no food, how were the couple themselves eating? If the prosecution is saying the house had no food except juice for the baby; then were the couple not feeding the child and starving themselves? While I think that there is negligence or lack of due diligence in taking the child to a doctor, or seeking more information when weight began to drop, it does not seem that even the prosecution believes they are deliberate murders; in which case this is a double injustice of a couple losing a child and having to spend life in prison because people don’t understand, or perhaps don’t wish to tolerate the values of vegans (since the values themselves imply that those in the jury, simply by how they eat and feed their own children are themselves guilty of cruelty). It seemed even the Judge had a preconceived view on them and their vegan beliefs as the mother, Jade, at sentencing asked the judge to look past his “perception” of the couple.

The prosecution says vegan beliefs hid deliberate murder and cruelty, and the reason we know that is because the mother did not breast feed enough, that they used soy milk instead of formula. Except that the accusations of murder arose BECAUSE the couple acted in a manner consistent to a personal interpretation of vegan belief. Home birth is not typical, water birth is not typical, believing hospitals have germs to harm babies is documented fact, but not taking a baby there anyway is not typical, not solely using breast milk is not typical, trying to feed a vegan diet to a baby is not typical. Having a black couple in Georgia being vegan is NOT typical. But does that really mean it is deliberate, calculated cruelty to children in a form of malice murder? So in the end, what exactly was on trial and how much did "perception" alter this trial?

Monday, May 07, 2007

Different viewpoints on a war report while Beth and Linda go to ER

With vastly different experiences I have gained an insight into the impact of societal acceptance (or lack thereof): I am talking about the survey of battlefield ethics in Iraq as reported at the BBC versus CNN and about my trip to the ER on Saturday. How do those two relate? They relate because not only does what we expect to find dictate how we view and treat others (the ER crew with me, the US Marines with Iraqi civilians, the US public with the reports of US marines) but it also determines what we will expect and accept as behavior in other; making it almost impossible at time for communication when those expectations are breached (like when a female is trying to see another female in ER and keeps using the word “spouse”).

Let’s look first at the news story: “US Iraq troops 'condone torture'” says the BBC which talks about an army mental health survey done in Iraq and examined soldiers views of torture and treatment of civilians. They quote the pentagon and then start by saying that “less than half the troops in Iraq thought Iraqi civilians should be treated with dignity and respect.” They also highlight that the report told the Pentagon to shorten deployments but the reality is that they have been extended.

CNN on the other hand has the story titled: “Study: Anxiety, depression, acute stress in combat troops.” This particular title makes it appear that the only thing of interest to Americans is Americans if CNN has to chose a title about American Soldiers torturing civilians or American soldiers feeling depressed….let’s focus on the struggles of the guys in green! The story leads that one third of soldiers in high levels of combat report stress and depression. The third paragraph says that “third of soldiers and Marines reported that torture should be allowed to save the life of a comrade.” It omits mentioning that in the question the torture would be carried out on civilians.

In the report itself, pages 34-43 we find out that while over 80% of those interviewed said they received appropriate training, 17% percent of the forces (both soldiers and marines) felt ALL non-combatants should be treated as insurgents, the percentage who believed torture was okay if it saved the life of another US soldier was over 40%, and if it led to information of insurgents, 35%-39%. About 10% of soldiers admit to “modifying” the Rules of Engagement while 7% of the marines are “rogue” or “have unit members who ignore the rules of engagement”. That wasn’t surprising to me, what surprised me was percentage of marines who stated they would report a fellow marine. Q: Would you report a fellow marine of stealing from a NON-combatant? Yes: 33%; No: 66%. Q: Would you report a fellow marine for injuring or killing an innocent non-combatant? Yes: 40%, No: 60%. Indeed that was the highest score for marines on ALL questions of reporting, while the lowest was for unnecessarily damaging property at 30% for yes. Correctly trained: Yes. Will report illegal acts against civilians: No.

The report also found that if a unit member had died, the percent of illegal actions against civilians almost doubled or more, for instance damaging non-combatant property went from 8% of self reporting to 15% answering the question yes. If the soldier has handled the dead or body parts, it goes up again; 20% for damaging property and the difference in hitting and kicking civilians when “unnecessary” goes from 3% to 9%. If the percentages are statistically accurate we are talking about thousands to tens of thousands of soldiers just in the kicking and hitting of civilians, maybe over 100,000 soldiers in the cursing at, verbally abusing civilians. But, that is a debate for another day, since these are just statistics, and self reported ones at that (usually self reported stats are LOW). What interested me all the more was that a report comes out saying that a Marine, the symbol of American ideals can go on a spree of robbing civilians, kicking random people, destroying their stuff and no one will do anything about it; indeed already many are acting out in this way. And the news response, and the national response is that the soldier needs to be taken care of. Or rather “does not compute.” Marines and soldiers heroic and breaking down under stressful conditions in combat and needing to be helped or at least blame leaders about this betrayal of “our boys” (and girls…some forget): That can be understood. American soldiers advocating torture, beating up civilians and robbing them as part of their “road to democracy”: does not compute!

Now to my EMT experience. Little did we know, when hearing a story on Friday night about EMT personnel who told the person’s boyfriend that he was “making up” his sickle cell anemia attack, that within 12 hours I would be in an ambulance; admittedly a stationary ambulance that had refused to allow Linda to accompany me because they assumed she was a nurse or registered aide (hey, two women…what else could we possible be), and having a EMT telling me, “Stop calling me Linda” since I couldn’t see and just kept saying her name over and over again. But my story is really rather repetitive as when even my heart specialist has no idea what is wrong with me, or why I pass out or faint or can’t get enough oxygen or become partially paralyzed or have neurotic slurring and spasms, then I guess I shouldn’t be too offended when the EMT keeps assuming (when I can’t speak) that I am a hysterical female having a panic attack and when I can speak that I am an ex-athlete who did performance enhancing (and perhaps recreational drugs). I shouldn’t be, but I am. Which is why I tend to give the EMT’s medical quizzes (they could define sickle cell anemia, nor the basic signs of hypothyroidism). Indeed, it was only my persistent and vindictive quizzing, which made one EMT so mad to dump me OUT of the ER recovery area and into the waiting room in a trolley in my bathing suit (and here I didn’t shave my legs because “it was only an hour swim”) which reunited me with Linda.

While I was labeled “hysterical female”, Linda had been labeled by the EMT as a lower end health professional who should step aside now that the “pros” had arrived. This is why they kept asking her, “What organization are you with” (meaning: Vancouver Island Health Authority, Private Nursing care), after she passed on the medical history. And she was looking puzzled and going, “Blue Cross?” (our insurance agency). “No, what organization are you with.” They assumed she was a health care person as she assisted in my transfer to the ambulance but once there, it was no go. “We don’t have any room.” She was told (they had an entire unused bench), and told that she could meet me “at the hospital.” She didn’t realize until later that they were denying her because they had never twigged she was my partner, but rather that they were “taking over” from her job. This left her to walk to the hospital. Once there however, getting to see me, or even find out if I was there was difficult due to a perception: what right does one female have to find out about another female in ER? So the ER information staff kept coming back to her with “So, you are a friend of the family?” and once with, “Was it your mother you are looking for?” Fed up, Linda said quite distinctly, “Her name is Elizabeth McClung and she is my SPOUSE.” This statement caused half the waiting area to immediately swivel necks to stare at her. While she didn’t get any information about me; or even find out if I was in the back, the woman stopped asking what her relationship to me was. In both instances, in a country where it is not only legal to marry, but we have, the inability for my partner to be with me in the hospital or in an ambulance comes not from the legal standpoint but because non of the medical personnel were able to process the information that we were partners, married, spouses and instead, would try to find something in their frame of reference which could work.

Marines and soldiers who have lost someone in their unit find it emotionally safer to assume EVERY Iraqi is the enemy and act accordingly’ a country finds it easier to look in the mirror if they focus on getting upset at Marines not getting more help, instead of what is being done daily in their names; EMT personnel (three men) see a woman holding another woman’s hand and stroking her hair and come to the only reasonable conclusion: she’s a medical professional, paid to help me. And me? Humiliated, labeled in ways that blame me for being unable to speak and move, once I get my voice back, I use it to lash out in frustration, displaying competence to try and put myself back in some equal footing, to try and publicly demonstrate they the EMT people do not know all the answers. A course of action, while temporary satisfying, can, as EMT still have power over my placement, have me dumped in a waiting room in just a swimsuit (a nice high cut Jackie O style).

The triage doctor and I agreed that I didn’t need to be there, I needed more specialists. “But people keep bringing me here when I can’t talk…or move…or breath.” I tell him. It happens. One person suggested I get a med-alert bracelet. Not sure what to put on it: leave to cook for 40 minutes, check occasionally. Not all EMT personnel are jerks, nor are all soldiers in Iraq. But sadly enough exist of both to make us civilians a bit leery of meeting them again.

Friday, May 04, 2007

Hitting guys in the groin (again), trying to pass out and some films

I just woke up (it's after 1 p.m.) from a dream where I was leading a protest at a private school where only men were allowed into certain fundraiser days (I owned the coffee shop at the school). I was leading the charge down the manicured driveway at all the elitist men yelling “Hit them in the groin” while I proceeded to do this. The condescending male principal went down with a twitchy face and after I had downed about four or five guys the rest of the fathers stopped moving toward the school. “I love the groin” I shouted (presumably to whichever freedom fighters had joined behind me), “they may be bigger, but it is like men have a gigantic OFF switch” and charged down the hill at the remaining fathers because they were no longer coming up towards me. Then in real life the phone rang. It was Linda checking up on me. Alas. So, there seems to be something a little off with my body; and maybe some unresolved issues in my mind (As I don’t want to scare off EVERY male reader of this blog, but wow, was I having fun!).

I did a medical test this week over two days in which my heart doctor told me to “try to pass out as many times as you can.” I passed out/fainted once a day until the day they covered me with sensors for heart rhythm and then didn’t pass out once for the next two days no matter what stupid thing I did (including going for a 5K wheel and then going up Beacon Hill without stopping in my chair). It is kind of like a doctor asking you to try and drink until you fall down as much as you can over two days – it is going to wipe you out for the two days....and a bit longer. I did find out some interesting info though: 1) In the chair, my heart rate stays below 185 (my maximum heart rate) even when charging up a hill. 2) In three minutes of light to moderate fencing footwork (on my feet, using my legs), I was sweating like no tomorrow and my heart rate was at 204. After a minutes rest I went for another 90 seconds and my heart rate was 224. After seven minutes rest my pressure was 165/135 (WAY too high) and my heart rate was still 155 (it wasn’t going down). So, going up giant hill in the wheelchair may make me sleep for a LONG time, but it won’t kill me; fencing or running probably will.

I watched the Celluloid Closet this week about the history of gays in film. I enjoyed it, particularly finding out that Ben Hur, one of the very few films our ultra conservative church would show or allow people to watch had an overt gay love affair between the two main characters. The script writers and director had this three hour film which was basically “Guy is friends with guy but now hates him.” Writer Gore Vidal suggested that Ben Hur and the Roman Messala be teen lovers and then when Ben Hur returns, Messala wants to return to being lovers but Ben Hur does not, and the love/hate comes from that. The head of the film sort of flipped with a “This is Ben Hur! Ben Hur: A Tale of the Christ!” But since no one else had a better idea they went with it but only told the actor playing Messala, not Charlton Heston. So while Messala is intertwining arms to have a drink and telling Ben Hur how fantastic he looks, Heston is the typical “straight friend” who sort of plows on with the conversation with a puzzled look on his face. Wonderful!

I was sad however to find that the voices for the lesbian depiction in film were two straight women (Whoopie and Susan Sarandon) who have had on screen lesbian kisses. Both immediately start saying how the kiss wasn’t really about attraction but about a sort of love between these women that transcends attraction (kinda of the “we’re not gay, we are just girls bonding together”). Where was Jolie in Gia, a woman who at least has had relationships with women on and off film? Come on, two women kiss in a film but are NOT attracted to each other? Sigh. And that was the voice of on screen lesbians in film. So I was a little disappointed with that since I DO tend to kiss people I am attracted to (unlike heterosexuals I guess). It would be interesting if they did another version of the Celluloid Closet for say a 15 year anniversary and a 25 year anniversary – to update the films (though certain ones like Gia and Victor/Victoria were missing – due to studio consent I assumed). It would also be nice to include Asian film, which often have no problem showing gay, lesbian or transgendered characters, like the Hong Kong action film So Close about a female thief and a female detective assigned to catch her; they fall in love during their chases/encounters so it is an action and a “tragic love” story.

This was brought back to mind when I later watched Tom-Yum-Goong, the Thai sequel to Ong Bak (I think this film it is called The Protector in the North America). I watched the Thai version, as the film has all the subtly of a Rocky film but for Thai culture. Elephants are sacred; the King is sacred so when an elephant dedicated to the Monarch is stolen to be EATEN by a Vietnamese gang, you don’t need to know who the villain is. Of course, since so many Australians annually to Thailand to party and do naughty things, in the film, the evil gang flee to Australia so our Thai hero must pursue them and redeem Thai virtue. What made this film unique was that the US owners of the film decided to cut almost 30 minutes of the original film and give it a new “American” soundtrack. Most of the cuts were cultural; either having to do with the police or with Madame Rose. Madame Rose is a sort of Lady McBeth, who having dedicated her life to her crime family is constantly passed over and insulted because she is a transsexual. At one dinner, the head of the family makes some pretty harsh insults at her in front of outsiders (calling her an “it” and “worm”) and tells her to get back to her restaurant which is all she will manage in the family. So she starts her poisoning campaign (particularly when they plan to pass her over and appoint a 13 year old boy as the new head of the family because...he’s male). The character was played by Xing Jing, the first transsexual to transition in China. In the US release much of her scenes (including her plans to ascend as Queen over the gangs) is cut out, as well as all references to her as a transitioned female. I am not sure if it because she is the most sympathetic of the “baddies” or simply some editorial policy that Americans just can’t “get it” regarding transsexual/transgender individuals except as comedies ala Mrs. Doubtfire (which looking at the comments on IMB about “wow, that Thai lady is a Thai dude” might be right: Xing Jing is a transitioned female actress from CHINA – I know, I know, “they all look alike” – who also played in the Korea film Resurrection of the Little Match Girl) For me it was interesting to listen to the commentary because in one scene the Thai hero actually is sorta violent with a woman, disarming her (1 woman to about 200 guys attacking the hero). But in Thai culture, men don’t touch women. In the commentary they talked about having to find a female who looked Vietnamese (so I guess that is okay). Also even though the hero knocks Madame Rose off a helicopter, we are shown in a later scene that she is still alive (Thai guy killing a woman.....big no no!) – that scene was cut in the US version (as Americans like to see the villains DEAD, blown up, dismembered, whatever). So if you want to watch a THAI film, get the thai version of this, but if all you want is "bad guys, good guy, things blow up" you are far better off getting the American film The Marine which will deliver exactly what you need (I was too testosterone impared to appreciate a film where beefed up all Marine dives out of something blowing up once every 10 minutes for an entire film - even when his wife is drowning...he is off, diving out of something blowing up.)

Uh, that’s it, I guess I better be off doing something while it is still daylight. My new chair comes in a week (I hope). And I hope to get some more blogging done this week since I don’t have medical tests (that I know about). In my defence, it really is hard to try and pass out and blog at the same time – blogging is not known as a “high impact” sport.

Tuesday, May 01, 2007

Blogging against Disablism: those lazy, deceiving disabled..why won't they die?

A group that are lazy, deceivers, liars, take the easy way, always have their hand out, always feel the rules don’t apply to them, unwilling to take responsibility, unwilling to try. Blogging Against Disablism Day, May 1st 2007No, not just a historic view of the Welsh (“Welshed on a deal”), or Gypsies (“Got gypped”) or Jews, I am talking about the Western attitude toward people with disabilities; in particularly those with sudden or emerging disabilities.

Sadly, in one respect, the US leads Canada by decades. While the US has had disability protection in some regards since basic civil rights, it was the 1990 American with Disabilities act which ensured some level of equal access (theoretically). Canada has had a parliamentary committee on a federal disability act since 1981, but still does not have a federal act in place, regardless of Prime Minister Harper’s assurance at election two yeas ago that he would pass one (nor has it been able to be introduced as a private member bill). This means that any access, discrimination or otherwise on a federal or provincial level is essentially up to people’s “good will.” Indeed British Columbia (my province) not only cut disability employment and benefits offices as cost cutting but introduced a “new” disability bill in 2002 without consultation of people with disabilities. This bill reflected the growing attitude of government that disabled were the fat in the annual budget; that with periodic reviews these people could be “put to work” or determined not disabled (One store manager in Victoria told me that she thought autistic people with IQ's in the 70's should be forced to work "somewhere, sweeping or something, put them to work"); that essentially, if they really tried, people with disabilities didn’t need assistance, just a stronger motivation to try harder. This is why the new BC act narrows what is defined as a disability, refuses to accept a higher cost of living for those with disabilities but also will not create a “permanent disability” designation. And like many other countries, those on assistance must undergo “evaluation checks” as determined by the government (that’s the lingo for: “prove you are disabled”). It is also the reason that each organization and body requires its own application for disability: an application to ride transit with a wheelchair (doctor cost to fill out: $15), an application for a parking pass (doctor cost: $15-50), federal tax exemption (doctor cost $50-$150), BC designation (travel expenses to their doctors, and cost for filling out forms $50-?), and since I live on an island, designation by BC ferries for disabled (application and interview: One person I talked to was challenged to “prove” that it was their wheelchair, in order to get a $5 discount on a ferry ticket).

I know two of the people whose government job it is in BC to find the “slackers” and cut them from disability (regardless that the only way to qualify for disability payments is to have less that $3000 in assets to begin with). I have not applied as since my partner makes money, so I do not qualify. However earlier in life, during a period of temporary disability in the UK, even though I was designated as “disabled” I was awarded a monthly supplement assessed income of $0 (but I was exempt from my share of paying garbage tax). After three months I was ordered by letter to come “with two forms of picture ID” to prove to an independent doctor that I was disabled. The entire experience was one in which they dictated that some/many designated disabled people are cheats and liars and that I needed to prove I wasn’t one of them (and prove that I hadn’t sent in a different disabled person to trick them into thinking it was me). The doctor told me, “You have 10 minutes.” I asked if he had my medical records. He opened the folder. It was empty. “You asked my GP for them didn’t you?” I asked.

“You have nine minutes.” He responded.

“I have nine minutes to “prove” I am disabled because you don’t believe I am?”

“Correct”

“Well,” I said, “First I would like you to prove that you are a licensed GP who is qualified to evaluate me. I brought two pieces of Picture ID to verify my identity, all I ask is your Medical Certificate.”

He recoiled as if I had struck him. And was speechless for another minute (now down to 8 minutes). “I don’t have to prove anything to you.”

“Unless you can verify that you actually are a doctor, I will not disclose confidential medical information with you simply for you to decide if I am a liar.” I responded.

“I will be writing the report on you regardless” he threatened, “If you do not give me the information then I will be forced to report on your attitude and you may find your monthly supplement decreased.”

So, now I was not being evaluated on my physical need, but on my “attitude”? I was being threatened for not having the right attitude? Thankfully, half of $0 is still $0, though I clearly remember the humiliation of attending my award ceremony for a Ph.D. in one month and being summoned to a room to prove to some guy who said he was a doctor that I wasn’t a liar and cheat the next. What if my ability to feed or transport myself was on the line instead, or my ability to breath, to get medical supplies?

My experience of Christian, western and particularly west coast values is that society has decided to interact with me in a way which assumes my control, my desire and my ability to attain, if not a movement out of disability into a visually acceptable form whether Able Bodied (AB) or not, at least a movement toward “getting better” or independent, regardless of the actual medical situation. Basically, if I want to "fit in", be spoken to with some respect, I need to act as if I am "trying to get better" even if I know the reality to be the opposite.

In practical experience I have found that it is between a month and two months where people will “tolerate” a suddenly or progressively disabled condition. In many ways similar to those who have been sexually abused or dealing with grief of a suicide; after that, the consensus seems to be that the person should “buck up” or return to normal, or at least cease talking about the disability/Abuse/etc. At some point, people run out of “I’ll be rooting for you.”, or “I know things will get better” and they simply disappear. I have seen it with around 90% of the people I knew before entering the wheelchair (some athletic friends had an open, “See you once you get better” attitude), and I have seen in enacted by others on friends with disabilities. A woman with MS used to meet a running group when she was able to jog, but after several weeks of intermittent coming, many in the group simply stopped notifying her of jogging times. This was passed off as for her benefit, since, after all, she couldn’t consistently come. Though how being isolated from social contact and not even given the choice of participating was a greater benefit to those who no could not longer pretend she was “normal” than her, left in growing isolation. The same occured when I temped in a law office as the partners discussed how to best terminate a woman with MS who could no longer type effectively; always finished with "She'll be more comfortable at home anyways."

But then, growing up, that was always the picture given of people with illnesses, that once they were no longer AB, and once it became clear they were not going to recover, they made an announcement and then simply disappeared. The idea that they might want some human interaction, or to start a different life from before, even if they had limited time left seemed (and to many still seems) odd and often percieved as selfish. One of the things that the 80’s and 90’s taught us is that people with AIDS USED to be famous but once they have it, except for fundraising, their main job is dying, preferably out of sight. Lou Gehrig, revered for his baseball work ethic and stoic face in adversity, for most people there is simply a reverence silence for the time between his stepping down from the Yankees and his death. Indeed in the Gary Cooper film of his “heroic life” the movie ENDS once he has admitted his illness is non recoverable and he retires from the Yankees (the one film I found reflecting my life, about an female athlete who suffered a sudden disability so reflected public tastes it, like Pride of the Yankees won the Oscar: it was Million Dollar Baby and she killed herself rather than live disabled.). That Lou Gehrig had to get up another 600+ mornings, or that he served for over a year on the New York City Parole Board is ignored, purposefully so. Better, thought the Greeks and Romans, and the Western world of today to die, or be remembered in ones prime. On a recent trip, meeting dozens of people, I was never asked what I do. I was however repeated asked, “What did I do (before being in the chair)?”

My experience with Christians during the last several months seems to best sum up this particular western idea that oppresses newly disabled or people with continuing denegation into a choice of having two lives; one in which you are optimistic and happy to others while the bulk of your struggles become a secret life; or share all aspects of your life and face rejection. When I first got ill, there were dozens if not over a hundred of Christians in my online or real life experiences who told me they were “praying for me”; which was fine because I was in denial anyway. I WAS going to get better. However as time went on, and I started to accept as the illness took over more and more of my life, it became clear that this was not going to be a “quick fix.” With so many friends and associates unable to deal with me in a wheelchair (some literally physically run away when they see me), I asked people to stop “praying” and start sending me emails, or cards or something, I needed support. I was no longer convinced anymore that God was making a mistake, or rather I needed to focus and have encouragement to get up, to get the medical test done, to try and create a life WHERE I WAS. And the constant statements that I was “going to get better” that “they were praying that I recover” while actually ignoring my growing isolation and depression only reinforced that there was only one acceptable outcome (one which I couldn’t control). After I asked for emails instead of prayers the response was very mixed, many quit communicating, even that they would pray, a few did contact me, and some became very angry. They told me in no uncertain terms that they WOULD pray for me whether I wanted them to or not, whether I had accepted where I was or not (and no, they didn’t reach out, email me, send a personal message or otherwise). The communications one to one I had in most cases refused to move to where I WAS and stuck entirely to “what was I doing to get better” – was I seeing a new doctor, was there a new test, what could I be doing to make myself get better. These invariable ended with the assurance that I would be recover…and I’d see that by next week (or next month, or soon). For me to talk and joke normally, I was told constantly I was “inspirational”, “Brave”, “So strong” (on a recent trip, I did my usual series of strange and sarcastic jokes and was told by about 6 people in the course of an hour how “Cheerful” I was. “Cheerful?” I asked Linda as no one had ever used that word to describe me before, more like a person who takes morbid delight. “Cheerful…..for someone in a wheelchair” she explained). Conversations about life which was not similar to pre-illness days were ignored or indeed had bizarre responses. A post that I could not longer take the pain and was contemplating suicide; or that I did not have the strength to continue got comments like, "Your optimism is always an inspiration", "You always make me laugh", "Your belief and strength inspire me".

As a pain ridden degenerating Christian, there are certain rules I am suppose to abide by (faith that I will get better, or that I will die and be AB in the afterlife, that I have faith in God.....to get me better, and that I am inspirational) – deviate from these, particularly the one in which I have faith that God doesn't want me in a wheelchair, that I accept I will likely be wheelchair bound and sick for quite some time and people get angry. Right now 75%+ of the Christians I know don’t communicate with me, most are still in the “I’m praying for you” state, which is about as kind right now as me telling them every time I see them, “I’ll be praying for you to get good looking” – They are clearly telling me that struggling along as I am just ISN’T enough. And when I start posting pictures of myself doing wheelies and people just go a dead silence. I’m supposed to be using my energy to get better, to get a job, to go back to being “normal”, not delighting in the mastery of my mobility aid! Currently on Christian Forum (the largest of the online Christian communities, with about 2500 people on at any one time I have, so far, found a total of one wheelchair user….me; my other online Christian forum has two – I am pretty sure that 5% of the population can’t disappear, and I am pretty sure the Christians don’t kill them…so where did they go?)

Where I live, admittedly a country whose literature is marked by having the weak eaten or frozen or killed in other ways by nature, there seems to be those who manage somehow to return to an independent life (usually SCI: spinal cord injury), those who are put into care and those like me who are in some hazy limbo, reliant on someone to take care of us. There is an idea and debate that like gays, people with disabilities don’t need legal protection because if we do our jobs good enough and work hard enough, people won’t discriminate against us. Hmmmmm, I can’t get cars to stop for me at a crosswalk and have to wait for an AB to come to the corner so cars will stop (Yesterday at as I started to enter the cross walk, the car coming ACCELERATED toward me, swerving past me to continue on through), but I am supposed to rely on people who won’t even talk to me to serve me in a store to not hold prejudice to give me an equal chance to outperform them? Who are we kidding. To go down to the video store, rent a film and return home now requires the level of effort and exhaustion that I used to call “Training for the Women's Epee Nationals.”

Yesterday, I went, for the first time in 120 days, on the same route in my wheelchair as the last jog I took on my legs. I wanted to prove something to myself (what exactly I don't know). Yet I couldn’t sleep until 3 AM last night because of the pain (and I was on a lot of pills) and was delirious and hallucinating for the next three hours because of the pain levels. All that for 70 minutes of wheeling a jogging route. Is that “inspirational”, is that “courageous”, Is that how I am going to outperform someone by pulling that off in an eight hour job? Or is that called being STUPID? At what point do I realize that a couple hours of pretending I have the strength and values of an AB on one day but end up in bed for the next two is a bad trade? And at what point will people stop trying to expect that of me?

I am not dead, I am not getting better and if I can learn to live with it, so can you. If you want to know what the doctors think, one specialist and one GP think a major portion of this will be lifelong. When I told someone that I got referred to a book of “alternative” medicine and how I could use my own healing powers. I am not lazy, I am working harder than ever before to find a balance of life; but it won’t be the same one as before. Like coming out of the closet sexually, only this time, it wasn’t me lying to you, it is just my body changing the rules of the game. But I am still here; stop trying to shove me back in the closet or behind some veil with the message that you will deal with me when I am better, trying harder to get better or dead. I still wake up (not always in the morning), I still make plans, I still am worth knowing, and I still can contribute to society; but not if I have to compete against every AB. That’s just the way it is. If the only thing society wants is the “best” person; I’m not it (I can't even reach the top shelf anymore). I don’t have a solution to that; I only know that I am not going away and I am not going to pretend my life right now is different than it is; I hope people challenge themselves to deal with that, because I never noticed people learning much about themselves or others while running away.