I am not AB: how easy to forget. And some 'family values'

I was stupid. Assuming people would get disability time, assuming that I was going to the same sort of protection and care as I had at home. The caregiver book notes that to those not with a chronic condition, the obsession of the self, my need for sound, for sleep, and other medical issues are seen as self absorbtion. To the person with the condition, it is the basics of survival. I forgot that.

The fastest road to getting FUBAR (effed up beyond all recognition) with a chonic condition/disease while on a visit/trip is to forget the obvioust: I have a Chronic degenerative and terminal condition and disease (In fact I have many). And THAT is why I haven’t been blogging.

Because instead of being me: the person who has the regulated medicine, the regulated drink, sleep every 8 hours, more regulated medical drinks – instead I became what everyone here wanted me to be (and what I did too): An able bodied person sitting down. I can have it all (yet the chains around my ankle say that the diseases won’t let me go that easy).

Even Linda was sucked into the fantasy for a day, then two days as I am not too bad, and yet, even the seizures after talking too long, don’t give us the medical the heads up. The reminder that I need consistency and stability, I need others to work around my health schedule; not because I am a control freak or even like it, but because it limits the risk to my health. I did not follow this rule, I did not even remember until three days in and it was too late, now sleeping three times a day, grand mals every day, a missed nap for an ENTIRE day and having only eaten once (one way the matriarch controls is with food. We did not stay with them so we don’t get food. Linda shows up at lunch, I don’t as I am on the toilet. So I get no food. I was sort of asleep/sort of comatose at dinner for my third ‘nap’ where it is has been four hours and I can’t wake up – I get no food, no one to check on me the whole day. The Matriarch is a care worker). In fact the entire trip I will only have two meals a day for two days, the rest of the time I eat once on two other days and not at all the rest – if I show I up late, (and people on disability time who are not accommodated turn up late) don’t get to eat.

I got off the plane swearing I would be in better shape with better reserves when the week was up and it was time to go back on. Linda said we would take every other day off, that health came first. Today we realized she hadn’t once checked to see if I had drunk enough liquids (I don't get thirsty), not the whole week.

Did I want to see the nieces and nephews? Yes. Even though one couple would not recognize the Canadian legal marriage licence and that I was to referred to only as “Beth” and “Linda’s Friend.” I saw the kids, I played with the kids, and every time we were getting on, it was Linda's mother, who was complicit in the discrimination, would break it up and suggest something else to the kids, taking them away.

In this family there is only the recognition of the worth of men. A male cousin who cleans the street will always be more important than Linda, her daughter, a woman who regulates the service within government ministries in her portfolio. This daughter, who now has her previous boss’ clients as just PART of her portfolio job is, I am told, to be a blank slate, to merely do as a good woman does, and smooth things over in the family, to give joy to all, to do nothing but cook, clean, and be a good person if she can’t be a mother. That she has lived on two continents and travelled three extensively is an embarrassment. And the fact that I am there; well it is DIFFICULTY isn’t it, like the cousin who won’t marry (in a church), and has a partner (hetero). Who is introduced single and left to himself to introduce his partner of long-standing common-law marriage.

I couldn’t keep up and so I was thrown out the back. Forget the way they acted or statements towards gays. If on day one there are seizures after pushing a person who says they need a nap at 7:00, and one day two there is a grand mal and other seizures for a pushing me (and I let them, to my own shame) past when I needed to take care of my own health.
Eiki Eiki, who we took along, yes, the plushie got me to remember by asking me "Who are you?" Remember. To remember that every weekend I announce when we are going to do the tasks for getting the postcards done: matching, stickering, stamping, writing – none of these happen in those time frames. But here, I was to keep not to disability time but able body time and I was still pushing myself? Until I collapsed (which of course means no Linda and no food – she was sucked in just as I was). And yet, dragged myself to see more relatives, who kept me out in the sunset, until I was covered with bug bites, hours past my nap time, have six grand mals; including slamming my head against the rocks in the driveway. The child were always protected from seeing me. Of all the relatives, over the days only three stayed, only one actively helped, and she was a person who knew about being down physically. I could not speak and yet I was loaded into the van and informed to arrive the next day once I awoke for a ‘family reunion’ where all the relatives could come and gawk, the matriarch ruling the show.

Perhaps I am mistaken, I would think when I was a teacher, having a student unable to speak or move half their body after ONE grand mal would not make me remind them to make sure and get their home in. After six? Because calls from the matriarch every 20 minutes on how late we were to Linda rattled her into forgetting the medical bag and NOT GOING BACK and thus there was no way to stop the two cycles I went into. I was then back on the toilet, reading the last of the manga to keep the pain away before performing a digital exam (yes, sticking my finger up my ass). If you want to know why it takes four hours for me to have a NORMAL dump and why the first day it took 5 hours and a nap to get the first piece of feces out it is because my body does not produce lubricant anymore. Well, except the blood when the roughage undigested rakes the walls. That hurts. Well, after the exam, at 3:00 am I got emergency medical advice and it seems that the walls of the lower intestine (connected directly to the central autonomic system) and weakening, and that one had, when pushing covered the anus so nothing gets out. The “good” news is that it is NOT fused, yet.

What does that mean, it means I have to try to get back to Victoria after so much work to have a normal…every two day dump, I will be returning without the knowledge if the strength of this wall will return it IN TIME. While other (read very unpleasant) alternatives are tried for a while.

So with a bit of a fever and my panties stuffed with klennex for the anal blood, I went to sleep, to wake and call Linda: already at the ‘family Sunday dinner.’ She came back to help me shower and dress called every 20 minutes by the matriarch to get loud sighs and ‘you aren’t ready YET?!”

I did come. I guess like others, who walked into known death chambers and shooting galleries I didn’t stop and say, “Enough. I want to live.” Amazing how strong social pressure can be. Linda’s father had built three ramps, a clear statement that I was to have equal access to the house. The matriarch had the ramps put aside for ‘the convenience of others.’ We gave our gifts which were a hit. There was of course no card or gift from us though several of the people there HAD received a postcard from the project. And our 16 years of marriage together in August, six legally in Canada? Yeah. Right. Next. Like Queen Victoria, there were no lesbians in this house, just 'good friends'. And when I am dead, I will fade, as though we all met, none of the parents, the parents of my nieces and nephews took pictures.

On arriving we said when we were leaving. At that time, I say I am leaving. The matriarch has the ramp dismantled. Others may need to leave (there are other doors out).

While waiting for the ramp to be created again, I start to go into seizure, already on oxygen, I do, I have a seizure, then another, then I go to the ground, Linda says that ONE person from the 20+ there helps, holds my head as Linda puts the anti-seizure meds under my tongue. I grand mal/full brain seizure, then another, I am semi-awake, able to hear, and I listen as Linda’s mother, the matriarch, doesn't know how Linda can stand doing it; that while the mother is in caregiving she would never help out her people like Linda does with me, hands on and all (she also illegally sleeps during shifts, but says it is okay as others do it). And then a few comments about how she doesn't know how Linda can stand it (with implications that I should be left in a ditch somewhere). My ears tell me she is holding court somewhere right, probably in the kitchen with the mothers and others, a crowd of 10 or so.

Linda, the person holding my head and I fight on in the now emptied living room. I stop breathing, Linda keeps bringing me back but I can’t stay conscious more than two or three seconds. She has to use the emergency ambi-bag to keep me breathing. I have another full seizure.

This time when I wake, I can see nothing but I can hear the matriarch telling everyone that what is happening to me is because of my THYROID and how a book she read tells how the thyroid is connected to everything. She is too ashamed of her own daughter to tell anyone that I am married to her, and she was, we found part way through, too …..I don’t know, ashamed, to tell anyone how ill I was. I’m not sick, I’m stubborn. I’m not dying, I’m holding people up from dessert. So now, except for the one family member who had a TIA with lasting memory and absence seizures who KNOWS what it is like and the person holding my head, I have been reduced to a thyroid problem and an inconvenience.

“Aunt Beth,” one of my nieces asks, “why do you sometimes stutter when you are trying say something?”

“Well,” I say, “It is like trying to find a word in a book, sometimes I can’t find the right page right away so I just stutter until I find it.”

“Oh.”

The parents go, “We are going to have to explain that later.”

I don’t know how many grand mals I had, or how often I stopped breathing but it was an hour later when I could breath on my own, one eye open. The matriarch is already deciding who will visit me that night and who will we see the next day. The words, “Get to the airport” have not yet been spoken. I am worried, but luckily, I can’t see much. We go down the ramp, I gripping the wheels and Linda the chair, the rest watch.

Someone still comes to the motel room, one last visit, or second to last, not it will be the last as at 10 pm I finally get my nap. I don’t get to sleep as long as my body needs it but waken to an alarm, waken to pack and then to sleep for 5.5 hours so I can wake tomorrow for a 10 hour day on a two stopper hopper airline flight.

I forgot who I was, and it was fun for a day, to be the Able Bodied Aunt. But then to be forced into the role again and again? After HOW MANY days of grand mals does it take before they get that maybe the naps aren’t me being selfish and lazy? That the oxygen and medicine are for something more than a thyroid condition? We can’t sleep or nap as there are two more calls, from the matriarch, more attempts of control over that last 11 hours here.

I can’t show our pictures here, not that I would but I can’t because it was implied if not stated that the people who read me and my lesbian friends are pedophiles and I was not to show pictures of children to these predators. Yes, thanks.

So that is how I am out of manga, and I am out of here. I wish I had the energy to kiss Linda all the way down main street but just breathing has taken priority. I only hope that by the time I make it to the airport and on the plane, I have enough of ‘it’ whatever that is to make it Victoria.

There was joy, and magic, but those memories fell like petals to the oppressive demands first from within and then without to always be able bodied. Something I can’t be. And something I suffered, and Linda suffered because I couldn’t be what I’m not.

We crips are "These people" according to USA NBC Olympic coverage, woo hoo!

Okay, I am officially having a crap day. I didn’t get enough sleep. You know those head ache commercials weere people jackhammers work on your head – I actually HAD people with hammers, a LOT of people with hammers over me hammering over my head, blowtorching high powered blowtorches over my head. The “why?” is because it is going to rain and I guess they used a double crew up there for the day to finish the roof. That meant I retreated to the bathroom with my MP3 player in my ears and could still hear them (for hours). Do you know how strange it is to be taking a dump while listening to ABBA on full blast and STILL hearing roofers? Actually I think ANYONNE who takes dumps to ABBA at full blast already has severe issues (like if they are a guy and live with their parents, time to tell them about your orientation).

Then I was delayed getting a nap which culminated with me having a couple major seizures. The purple hand that was oxygen deprived was a clue this wasn’t a great day. What I don’t understand is that I went to Badminton last night so should be good (lost, lost, oh I just couldn’t click with the people I was playing with including one guy who would immediately go to the opposite court of where I was – real subtle dude). So I ended up partnered with one person who didn’t think I should be there (seriously), and that maybe people in chairs shouldn’t be playing badminton. So DURING the game, if it was out of my reach the person would just stand there and stare at me and say, “Hey it is on your side.” I eventually broke down and said in my repressed rage voice that “No matter how much I might WANT it to happen, wheelchairs don’t travel sideways five feet to get the birdie.” Anyway, we lost and my partner walked off and then when I put my racket in the rack they came up after a bit and took theirs out so we wouldn’t end up on the same court again (the next four rackets go on to the next game). Double Subtle.

I guess what bothers me is all this discrimination is open. Open, public, in your face bigotry! Recent I went with Cheryl to the store that a sign saying they were hiring part time, full time, management, and used the RAMPS to get down into the store. The woman told me they were desperate, that they had SIX stores on the same road and all their staff was leaving in two to three weeks for school. So when I said I had 14 years retail experience, there was the usual hemming and hawing but at the end, she actually came out and said, “There is a lot of WALKING in this job.” And when I pointed out I had already gone everywhere in her store in my chair there was the the usual, “Well, maybe if you talked to X, the person in charge of hiring….” (meaning “You got no chance but MAYBE she might hire you.”) And so I asked, that “‘when I drop off my resume’ you want me to put that I use a wheelchair on it?” And she was like, “Yes, just so…..they know….you know.” (oh, I KNOW!)

See that is the minor difference between having a disability act (like every other western country) and Canada, where my only recourse is to “claim” I am losing my “human rights” on a federal level, but that means I spend a decade over a Federal Supreme court case (instead of simply calling the city commissioner).

It wasn’t about me. I mean this woman was DESPERATE, she would have hired Cheryl, who was using a cane, because she could WALK. But I couldn’t, and while the job did not actually require a “lot of walking” it did allow a person in charge who thinks that people in wheelchairs shouldn’t be there, and let them actually say that. So I can’t even get a $8 an hour job filling in for an hour while someone takes a lunch at one of the stores? Because someone in a wheelchair sitting there ringing up customers is just not what that person (or actually any person working at any of the stories we visited that day) could imagine. So like the person who I played with, they would rather LOSE, than even TRY to learn to play WITH a person in a wheelchair. At badminton that person stayed on their side and stayed far from me. I won the first game but the second one is what I remember.

There is something about being reminded so often that as far are most people are concerned it doesn’t matter that I exist. See I could be a fucking genius with an un-recordable IQ (actually it was just they said the tests weren’t sophisticated enough yet), and a shitload of degrees, or I could be a vacuous barbie girl who stares into space and ponders yet another few hours why it might be that having a wheelchair makes maintain long, painted, french nails REALLY hard! All that matters is the wheelchair. Actually I probably could get more jobs as the perky barbie girl hired out due to my hobby of doing wheelchair modeling, to put a perky smile on a companies who wanted to be “disability friendly” for a day. Because when the RCMP civilian sector actually says in a recruitment tent they won’t hire people with Fibro or Chronic Fatigue…..that means you need to have an ad to show you are complying with Federal Hiring Targets, so a picture with someone in a wheelchair with other smiling people with a “recruiting now” sign is going to be part of THAT plan.

What bothers me is that I didn’t even make it to the usual, “This is an area where we find women don’t usually excel!” or whatever other sexists bullshit there is, no, here I didn’t actually didn’t get to be a person at all because all they could see was the wheelchair. The human (or non-human) in it was irrelevant.

One of the few things I can say I am genuinely happy about is that I AM dying, because I don’t have to take this bullshit much long. I don’t have continue to be told, as I was by one employer, that no, they wouldn’t hire me because ‘we already have an arrangement to hire mentally challenged people.’ What? Well slap a “gimp” sticker and add a flavor because I actually thought that I, Elizabeth McClung was applying for work, not “Quota girl” or “Wheelchair” or “wrong disability for our token disabled person.”

I know a lot of people are against Quota systems because you get hired and people there KNOW you are the “token” or “quota gimp.” Which just illustrates that some people don’t know how to FUCK UP A SYSTEM FROM WITHIN. I DO! Hey, in a city where I could (and Cheryl or Linda will back me up) get a job by the end of the week if I simply WALKED IN THE DOOR, I will take ANY token or Quota job. And then…….what, you think I am going to do a great job quietly so that they decide to hire more people in wheelchairs? Get real, I live Victoria which has the mental equivalent of deep south some time ago, except that they don’t even consider us wheelie enough of a human or a threat to rob or lynch us.

Example: I went to Triumph and asked in a public meeting the Managerial Head if the official policy of an agency to assist people with disabilities was for people in Wheelchair to BURN TO DEATH during a fire (as the fire exit we were REQUIRED to use was not wheelchair accessible), and she hemmed a bit before saying, yes and could you please sign here verifying you have heard and will comply with the fire training you have received. Seriously. No shit! So you think that if people actually saw me as human, actually thought I was like them that I wouldn’t be pulled out of my chair by any yahoo wanting fast cash? Bet ya!

Hey, I feel more secure against rape and attack NOW because after asking a survey of hetero males, I found out that other than devos, girls in wheelchairs are considered by men in the “undressing all women” way of looking for a girlfriend or sex toy that they are “too fucking complicated…just move on.” See, a woman who can walk but might have emotional problems which includes chasing a guy with a knife is still okay if she wears high heels and has a nice ass. But ‘dem wheelchair gals, I mean, are they even okay down there? Will they moan at the right time? Just too complicated to think about……

Okay, I guess my rant is over for the day (not likely!). I am glad to be out of this fight because while I have the patience for my own pain, my own health problems, I don’t have the time or patience for the bigotry which makes “dyke haters” actually seem enlightened (they can at least identify and articulate their hatred and bigotry!). I do recommend for all those in wheelchair in Victoria to do as I am going to do, for when the bus drivers will pull up, take on all walking passengers and then tell you there is “no space.” I am going to be carrying a chain and padlock. So I don’t go, nobody goes. Or you can drag me out of the chair and beside the bus, and since I know transit drivers have to fill out forms if their mirrors get dented I am thinking that won’t be their choice, but if it is, so be it.

Do you want to know what even a country that has had a disability act for 25 years thinks of people with disabilities? There is Natalie du Toit, a South African female swimmer who also happens to have an amputation, but says that she expects no quarter nor gives one. She finished sixteenth in the 6.2 mile open swim at the Olympics. From Wheelie Catholic: Natalie, who told reporters she gets frustrated when people "look at her stump or prosthetic leg before they look at her face"

Now we have the online coverage by NBC, a major network, they have 10 pictures of her. How many until they actually show her HEAD much less her face? It takes FOUR pictures. Yes, stump she is and stump is all she will be. There are 10 pictures of her……but only ONE of her actually doing her sport.

I have to ask, is there any other competitor in the Olympics were we get endless shots of their ankle, or pecs before we are graced with a picture of a head and them doing their sport before going back to pictures of their ankle? I am just saying that I am pretty sure the 10 pictures of Michael Phelp’s swimming a race included more than 10 % of him swimming and 80% of them focused on a piece of anatomy, let’s say his ASS, his tight ass in a swimsuit. What would people say if picture after picture scrolled by of his ASS while commentary of Michel Phelp’s swim was being made, eventually one picture of him swimming, then back to ass shots.

I would think the general population would think the large network NBC was smoking the waccy tabaccy, or LOVED his ass, or were a little off, or bigots.

So that is what 25 years of a disability act gets you, 1 picture of the event, and eventually showing the person has a HEAD and a face. Here is the quote of an American swimmer she beat (from the article), "I was swimming next to her and she beat me -- and she has one leg," Sutton said. "It's incredible she was able to do that." Golly, when you get beaten by a competitor it is talk about training, when beaten by a GIMP, she is just "incredible."

"I'd even go so far as to award her a separate medal," the winner said through a translator. "I have enormous respect for her. It is exceedingly hard. Just looking at these people inspires you."

I assume by “these people” she must mean left handers, I mean, it isn’t often that Olympians see left handers. Or was it because she was white she should get a separate medal?

Du Toit did receive a special gift from officials at the rowing basin: a traditional Chinese drawing encased in a wooden box.

And see, this is why I shouldn’t be a spokeswoman because I don’t take that type of shit, as much as I might play the crip card, or milk the whole “poor crip” for my own evil ends, I don’t takem not a "special award", being called, ‘these people’ (just a note to able bodied people reading this, we are actually just known as People, females or “better off barefoot and pregnant!”, whatever works!). I would have stuffed the painting down my prosthetic and limped off on it thanking the officials. Yup, we’ve come so far. Oops, that’s you, here in Canada, we are still a few decades of education away until we work UP to our official Olympic coverage using the phrase, “these people.” And no one giving a damn.