Changing my response to internalised stigma to get over how f*cking angry I am at my disability.
I fell into Disability late but at a time when I was supposed to be entering “my prime”. Your early 30’s are for maximizing on career, building a home, enjoying the solid friendships that survived your chaotic 20’s, revelling in the personality that finally feels secure! But when I turned 32, I began to see more doctors than I did friends. I was learning to walk differently, and talk differently. I was having to tackle a new world of unanswerable questions and harsh limitations. I had become an infant again but in an adult’s body. And I was pissed off. 18 months down the line, I still am! 1. They move so f*cking slowly. Why does it take so long to do just about everything?! From eating, to opening a bottle, to wiping the arse! Walking 20 paces drags on for what feels like miles and everything is so much further away. What is so damn difficult. I hear this dialogue in my head with every single action: The comparison between how fast I used to go to how painfully slowly I do things now causes so much irritation. And I know people don’t blame me, but I see them rolling their eyes, glancing at their watch. Their version of rushing causes envy…and it also makes me want to roll right over them at top speed. Can’t be rushing if you’re squished under me. 2. It can’t be as bad as they say it is. It's so exhausting all of the time? Why don’t you just stop? I would just unalive myself if I couldn’t even control my bladder. There is always so much whining over the everyday stuff like putting socks on. And they’re always talking about how inaccessible everything is. Peoples definition of “bad” is relative to their norm. And usually, if it’s something negative they have never had to remotely consider, one person’s protest is just another person’s whinging. I still need more personal experience to empathise with myself and others here. Empathy requires a profound ability to place one’s self in someone else’s shoes…but these shoes aren’t accessible to everyone. And people get pissed off if they can’t access empathy.
3. They buy so much useless stuff. A bit of clothing here, a pair of shoes there, a new hobby, a new book, a new blanket, a new poster, new wall paint: What IS all this crap?! In an inaccessible world, there are few safe spaces to exist with life’s simple pleasures.
I go outside, in my incontinence pants, with a carer and my wheelchair, to stare at a tree from 50 paces on the asphalt path…I’m glad to have a cheese plant when I get home to touch its leaves, rub the earth between my fingers, press my cheeks into the petals of fresh flowers, inhale the green.
It is infuriating to accumulate an entire societies worth of accessibility in one home.
4. They don’t even work. The day only has so many hours and there is only so much energy. The 9 to 5 is impossible. Going into an office is unimaginable. Working to a set schedule. Being unable to maintain a normal professional existence must be so unfulfilling. Not visibly contributing anything to others. Micromanaging the details of your entire existence and the interactions of others in your world can be very fulfilling. And never-ending. And exhausting. The simplest of tasks must be broken down, rearranged, put back together, timed, stamped, and dated…and adjusted at the drop of a hat. And then, on top of that, presenting your best self and turning up for others. Sometimes simply for their sake. No…not work at all.
5. They get more attention for their illness/disability.
For every medical issue, there is a medical service. And those services are are always overloaded. And these disabled people are always talking about them. Taking pictures of hospital beds or in doctors surgeries. It must be great to have so much attention straight away.
Being stuck in the taupe-halled hell a lot of the time is a reality of being disabled and maintaining safety and support. It's similar to a teacher always taking armfuls of their kids work home, or a chef using their knife skills even if they’re not in the professional kitchen.