I was asked today if I was ‘proud’ of what I do, the boxing, the outside wheeling?
“No.” I told them, “I’m not proud at all. How can I be proud of what others find distasteful, my continued existance?”
We are, disabled and Able Bodied, all types of bigots, and one of the most supported forms of bigotry is how we encourage each other to give in to our fear of illness, and altered human function and form. Drool, and averting the eyes is 'doing you a favor' - haha. Yes, because having everyone glace, look away and then talk about you, because your being alive makes them uncomfortable is helping me? No, helping them. It is no different than spotting who the odd one is in grade school, and somehow, they end up with no friends. They are stared at. They are, as you will well know if you were one, asked, "Why do you keep coming?", and the idea of invitation to a party, or even having anyone show up at one you host is laughable.
If your disease requires care, then no one will make conversation. I go outside, I go to the video store and it used to be that I had a lot of conversations, now no one wants to talk to me, because I talk slow and funny. Because look odd, bloated in strange places. Nothing that a devo would want to fantasize over. A friend saw a relative who had MS, and the person with MS had type 4, which is no remission, quick degeneration and in two years they were in a home with full time care, in their early 30's. No one at the gathering talked to them except immediate family. And probably the people who didn't felt good for NOT talking, rationalizing it as 'drawing attention' or 'making them feel bad'. Ah, because it is far better to KNOW you are the monster in the corner?
By the time we are adults we learn to stop being bigots in regards to race, or age, and many other human varieties. If a person avoids ever talking to a black person, it gets noticed, and they are a bigot. If a person won't work as an equal with a female, they are a bigot and it gets noticed. If they make comments about 'being with...own kind', they are a bigot and get noticed....unless they are talking about the visually openly degeneratively ill. Two years ago, the very friends who now nod and turn away from the person with MS being fed, cheered them on, invited them to dinner, made them part of their lives.
Is the person inside different? No. We learn that though we are racist, we struggle AGAINST it, in opening up conversation, in recognizing the person as equal. Why? Because as we watch and judge others, so society watches us. And right now, society does not WANT to see an openly and visibly degeneratively ill person as 'equal'.
Yet, is there a single extended family where a person will not have dementia, or incontinence, or problems eating, false teeth, a limitation of food, care from family and eventually care in a home? Not really. I am your future, for some, your near future, and that is horrific to you. I see it when people walk away if they can't understand my speech, or stop talking to me and just stare when I have problems talking, or how, the best way to clear a 100 foot circle is to have a seizure. Because any of this is rare? No, it is just socially sanctioned bigotry. And that attitude not only extends to the chronically ill and invisibly disabled but more so, the 'no no no, they are not one of US.' "No no, people with MS don't DIE in three or four years, that's NOT MS, you have to understand...."
Having a disease is in one way a single event and in another way, two events: the part where you pass enough, whether that is though use of devices like wheelchairs, to be socially acceptable in speech and ambitions. People who wheel the length of the State they live in for charity are 'inspirational', people who have their lungs suctioned out to breath are not.
People are proud of what I DID, but not what I DO. Though what I DO is the equivelant of digging a tunnel with only a plastic spoon.....every week. But this blog is my last beacon of communication with you and when it goes silent, so does my inbox. No one is 'proud' that I went a day and a half without having intestinal bleeding. Nor are they 'proud' that I live a life eating the same food (for fiber, for vitamin value) every day, drink the same drinks for years. I have such little choice at all and yet, I manage to stay going by planning things out days, weeks ahead of time.
I worked for over a week for the book and paper sale, one I was too sick to attend (thanks Linda). I work as much as is possible for the ebay sale which is on now (another batch of books added thursday and Sunday to make a 80+ book lot), and the first 43+ book lots are selling sunday with another 40-60 selling the next week. Or that due to body exhaustion, oversleeping and drowning feeling of loss of control and a degenerating illness, my isolation has me in the second day where 'Help', 'Won't someone help me', 'I am not a monster' and 'I need love' are written on my arms, and face and no one at my appointment, the waiting room, the home care people in the has said a word. Why? I have the greatest invisibility cloak ever invented, BIGOTRY.
As long as I don't pick up scissors (at which point the Canadian police will likely shoot me), I am clearly someone who is fucked up and not in a way that gets better. And who even knows how to deal with, or ask questions about a person like that? Our society doesn't.
So, I get depressed, I go a bit insane, and still I have to take the mountain of pills, the drinks at the time of the beeps on the watch, the other acts daily to prolong life, a life which is, as I was told when I picked up 'Grace' a documentary on four terminal individuals, to rent, that 'It's long! And not.....' they drift off as they take me in (did they mean, no fun? Funny?).
I said, I kind of hoped that four people's last several months would take longer than nine or 10 minutes each. That got me a walk away, and silence for the rest of my visit. Oh, I'm sorry, was reality the wrong thing to say? I should have said that I was watching it so I could use parts to raise money in a charity drive as I crawl across the length of town? Maybe you would talk to me then? Sigh.
I really have no regret pointing out bigotry, since I was one, though I told myself firmly I wasn't a racist, I simply didn't have in common to talk about (hahaha! Seriously, that's what I thought). I suppose those who ignore me and those like me think that too, though 'I need love' seems a pretty universal message, and I did use a pen this time instead of a knife so it could be read easier.
In the anime, Haibane Renmei, there is a town, which has a wall around it, and while most people are just people, there are a few who come out of a sort of giant organic egg, with wings and halo's. We follow one teen girl who is born, and watches as others either walk out into the woods and disappear, they believe, over the wall, leaving a black halo on the ground, or stay, and the halo flickers and they run out of time. Only those with white wings will fly over the wall. And for reasons of the heart, often never revealed, the feathers turn black. Our heroine, hacks desperately at hers, until one of the older and sadder women show her how to cover her wings, or dye them.
I was listening to a song, Dance until I die, and as usual, it was banal in the 'knowing ignorance' our culture celebrates. Not a song where one has looked at death, or dying, or even applied taking care of your own Nan or Grandfather to the song, no just all of us as teens or 20's or 30's with the freedom of choices so infinite that we don't even realize how many dozen we take for granted just this last hour. The person with stage 4 MS was in their 30's, and they aren't going to be dancing till they die. And while it isn't what you wanted to hear, well, realizing that there is pretty much nothing I do which can or does garner praise no matter how much I push myself answered the question, "Am I proud?"
I live because You sustain me. I die because You ordain it. Save me O Great God. - I wonder, which the person was praying to God for? Until now I always assumed it was for life. (Don't worry, those in disability only have use for 'quality of life' when stable and showing why that isn't a reason to want to die). How, I wonder, did she do it, 16 months on a ventilator, in a room with eight people, never able to speak, never to see her house again, almost always with liquid in her lungs, and no air conditioner in the summer and she was on the side where the sun shone on her. We had a heat wave that summer. She was the same age as me, only I was the one who was 'scared', I was the one who got 'busy' and couldn't visit for a month. BUSY? BUSY??? She's lying there 24/7, the hospital didn't have a portable ventilator, and she has no library, no privacy, a half curtain, endless beeping, and I was the person to bring her DVD sets, not knowing how much that would mean to me later in life.
But I was TOO BUSY?? I was probably doing something like getting the Christmas Concert ready or the HIV/AIDS UN Capital events ready, you know, something to be PROUD about.
2 hours ago