It’s my birthday and I am 40!
Forty feels like a lot. Not in an “I feel old” kind of way. In a ‘look at this stuff, isn’t it neat? Wouldn’t you think my collection (of years is) complete?” kind of a way. As in, I never expected to age. As far as I could observe as a kid, disabled people were young and then… evaporated? Who knows! All I knew was, there was a difference between an elderly person using a wheelchair because of age and a person who uses a wheelchair aging. One of which I had never seen. Obviously, this must mean disabled people don’t age. We exist and then our cells disperse throughout multiple dimensions. Except, I know old(er) disabled people now and they are glorious, so my theory may have flaws. Still, I am 40 and evanescent!
I heard an anecdote once that the fear of heights isn’t necessarily about falling, but a fear that you will jump even though you don’t want to. I am 40 and I exist so I looked it up: “the fear of heights really a fear of jumping,” and found a bunch of articles. One that said that people are more likely to experience the fear of the urge to jump when they already experience their bodily reactions more acutely, of adrenaline or anxiety or arousal. As if life was flaunting itself in the face of death, and, the other way around. They face each other, unshrinking and those of us sensitive to it, tremble in the midst of their defiance.
One of the articles said it is because I am over interpreting my brain’s danger signals. The journal of affective disorders explains that the High Place Phenomenon —the urge to jump from a high place— is a messed up survival instinct. Because you want to live, and falling from a great height threatens that, you feel the urge to jump; because you want to jump, you fear the height.
I shiver when I am facing any kind of intensity, fear of heights, the threat (or promise) of flight, a text I’m unsure of sending, or one I am overly excited to read, a new endeavour, vigour, anger, pleasure, tremendous beauty. And I don’t mean shiver in a metaphorical sense. I mean my teeth clatter and when I call Laura the phone shakes so violently in my hand that she just goes ‘oh, oh! ok. You’re really shivering!” And she shakes with me, like a ritual dance, until I put the phone in a stand or calm down.
As if in apprenticeship to flaunting existence —I quake.
That was before, of course. These days, I have reverse vertigo. I am not dizzy and I don’t feel like jumping off anything, the nearest height is the edge of my bed which is only threatening to the laptop I sleep with. This is also a survival instinct masquerading as… well, not a death impulse… an imitation! Possum. Thanatosis. Unwise to flaunt living when an eradicating danger is everywhere, but completely invisible. Maybe I am terrified, but physically incapable of the sustained degree of sensation that entails. I can only shake for so long. Risk is meant to be a threshold not a status. In dangerous times, afraid and aware aren't different things, so my nervous system —perhaps in defeat— is quite chilled-out. It’s downright bored. Tonic immobility. The low-road of the High Place Phenomenon in which constant crisis flatlines the signals. Because I want to live, I have contracted, I lull, engage in low-hum living, and wait.
Yet, somehow, despite inertia, I become 40.
I contemplate disabled aging in the midst of Ontario’s third wave, a lockdown which is a shutdown which is an emergency break which is a stay-at-home nothing. ICUs are filling up and I’m in a category of ineligibility for a ventilator —I’m also not eligible for a vaccine, but so is no one since about a million of them are in Ontario freezers being not distributed. I read in a notice about the ramping up of vaccines, that doctors will be indemnified for the decisions they may have to make about who gets life saving care, and who does not. The word indemnify is what jolts me. To talk about value or worth of life is to linger in the realm of the philosophical. To indemnify is to enter the realm of the non-negotiable. To some it will seem as if it is still philosophical, they are neither the ones who will have to make such a choice, neither are they in the discard pile. My life has been in the discard pile since it began —which was 40 years ago. Wouldn’t you think I’m a girl ...a girl who has.. everything?
I want more.
I shiver again. The urge to flaunt surges —which I think of now as the intent to negotiate. In my piece Unfaithful to Their Origins: A Divination, I made a collage with pieces of text from The Cyborg Manifesto, Judith Heumann’s memoir, and a tarot reading about me interpreted by me and Camelia Elias.
Interpreting The Death Card as my “blind spot”
“I’d rather be dead.” A sentiment people express about disability very openly, very often. Something they think they see and know about me. That my life must be miserable and I am just miraculously blind to it. “How inspiring!” Though, that’s everyone else’s blind spot. Not mine.
They’re essentially acting like you don’t exist, and they do it because they can. They believe that nothing will happen to them. Ignoring silences people. (J. Heumann)
Disability is atavistic, as is the image of the reaper. There’s no human quality to it, when it comes to take you, it shows no mercy.
Cyborgs are not reverent; they do not re-member the cosmos. (D.Harraway)
I am quite good at cheating death. It’s easy to do when death is being so vain for the camera. But you know when it’s even easier to cheat death?
When you are him.
If you stand up to the ignorer and get in their face, you break the norms of polite behavior (J. Heumann)
“The Tower is your broken spine. It rules you ‘from the inside’ whether you like it or not. Your work and your being stem from this source. Death is a sign of the non-negotiable. What others see is this uncompromising stance” (C. Elias)
and end up feeling worse, diminished, demeaned (J. Heumann)
My spine isn’t broken. Crooked, deformed, yes. But it never broke. It had no ‘tower moment.’ What it is, at least at the bottom, is a bit dead.
The main trouble with cyborgs, of course, is (D. Harraway)
the non-negotiable right at my root. Instead of a sacrum, I have the immutable. In the form of a nothing. The name of the condition caused by my genetic material is the literal translation for ‘sacral didn’t form.’
If sacral did not form, then sacral also cannot bind. (S. Orah Mark commenting on this piece as I wrote it during one of her workshops)
of, for, or relating to sacred rites or symbols.
"sacral horns of a Minoan type"
At the base of my spine, over the hollow, I have a tattoo of a ram with twisted horns. The hair on his forehead curls into flame. His eyes, piercing
“You are the Empress, but what makes you govern like the Empress is exactly the other things— ” (C. Elias)
illegitimate offspring are often exceedingly unfaithful to their origins (D. Harraway)
—agenesis. Wasn’t created
“all the way to the point of finality.” (C. Elias)
Their fathers, after all, are inessential. (D. Harraway)
As the news talks about the essential, I keep thinking of The Little Prince when the fox asks the little prince to tame him. As the fox muses on the philosophy of friendship the prince keeps interjecting, “Please, what does ‘tamed’ mean?”
Please, what does ‘essential’ mean?
“What is essential is invisible to the eyes,” says the fox. Which goes to show you that I’m not looking for any wisdom today. Only the most visual pleasure I could possibly achieve while at home, while in bed, while looking at myself. In my honour, I splurged on a showstopper cake. A cake to be my rival. So that I could compete with it for attention —for beauty. Which means, adornment; the art of. See also; evanesce, ascend, edible splendour, existence, forty.
Aunt.dad looked up the etymology of gorgeous wondering if it shared history with gorge. A gorgeous me gorges on a gorgeous cake. The word that stood out to both of us in it’s lineage?