Disability, woo! pt x

I fully expect to get to part infinity (and will look up the unicode for the infinity symbol) by the time this is done.


Today I lodged another complaint. As you may recall, my previous attempt at attending the statute-mandated (it’s law that they can’t determine my claim without this) medical assessment had me spending spoons to get there, climb two flights of stairs, and find out from the office-sharer’s receptionist that the doctor was sick. (And then, my psychiatrist has misentered the appointment in his phone, so all my appointments didn’t happen. I just like, wandered around the city for fun and then couldn’t move for a while. I feel terrible spending money on takeout but at least I don’t pass out while making it, or use so much effort that the nausea counteracts the ability to force feed myself.) This was two and a half weeks ago, and I have not been notified of the new day.


My application was lodged in June. May. Sometime around then. I talked about it here, but it’s so long ago that the days are fuzzy and the main point is that this is a necessary step for my claim to be determined, and it’s been four months, and it hasn’t been done. The first time, they rescheduled it and sent me to the wrong kind of appointment. The second time, I got there and was turned away because they weren’t expecting anyone who couldn’t speak, and oh, it was the wrong address anyway. The third time, the doctor was sick and had absolutely nobody to replace her. I was assured that her actual receptionist had let the department know and I wouldn’t be in trouble.


They also send these appointments by snail mail. I like having snail mail letters for my appointments, because I can go in and show the reception person and I don’t have to write ‘hi my name is k and im here for an appt please know i cant talk etc’. But I also like having lots of notice. If I had lots of notice, my mum, despite how I don’t want her making this about her, could come with me. It looks different if someone else drives me there to how it looks if I get there on my own, if someone has to sit with me and i sign to them and they talk for me. (It also usually results in people not taking my phone away from me, and ignoring my attempts to get it back because “but I need it! I have to copy down everything you typed!” because apparently providing a computer on which a word processing program with a save function is literally too hard for everyone but my psychiatrist, who just doesn’t read what i say.) Snail mail? Not much notice. And I’m meant to call them to reschedule, when they schedule appointments in the middle of my night. I’m not sure what part of delayed sleep phase is so hard, but I have it, and I’mma not be functional at 11am, because that’s like 2am, with all the non-dsps-people-awake-all-night-but-worse-because-aura-from-not-being-horizontal that goes with it.


It’s not very great. I think it’s designed so you get so frustrated you go get a job just so you don’t have to deal with them any more, except, of course, there are no jobs. There are, especially, no jobs that don’t involve sitting, don’t require a ton of computer screens, don’t involve typing or lifting or walking, that don’t involve talking, that don’t come with inbuilt ‘but you don’t look sick!’. If there is  a job, it requires business hours, or its full time, or doesn’t come with unlimited flexible paid leave for those days (all days) that seeing isn’t exactly my best skill.



It’s not like I don’t work, either. I post here, when I can, and it dosn’t turn out a mess of letters. I make sure my mum isn’t dead on the floor and apparently I even occasionally help out at church (and fervently wish that it was appropriate to stab the men who think that my presence there is a consent for them to touch me, because stabbing someone who grabs your arm and pulls you in because you’re pretty isn’t generally considered acceptable at a funeral). I try to keep my house not a mess. I try to cook and usually it’s the same thing over and over. It’s just not paid, reliable, income-generating work that’s covered by a union, is 38 hours a week, and is socially considered a ‘job’. The other thing that’s really annoying, with doctors and government and everyone, really, is that they think being not in a socially acceptable ‘job’ means you’re available all the time. We’re not. We need notice, just liek normal people do. We mau have to reschedule other appointments, or find someone to drive us, or have a routine task that would be detrimental to skip (like, say, sleep). We may be in unpaid work, or forced to ‘volunteer’ to earn our basic income (that we’re meant to have a right to, if we live in a society that has welfare systems in place). And, on top of all that, we have to prepare and plan so that we can do the thing in our condition, whatever it may be. I have to make sure I have enough medication so that I can not move after and not end up in worse pain, and rest before so that im not so exhausted and to minimise the impact of my aura, make extra sure o avoid triggers, etc etc. (Sceince apparently tells me that i have a genetically high pain tolerance, and that people with my profile typically underreport pain. Huh.) I have to have three hours to get ready before I leave at least an hour per ten minutes of travel (up to twenty minutes). I have to make sure I have medication with me, whatever documentation is required, plan what i want to say and take that with me… you know. Stuff. Stuff that takes time and energy. And, in a world where consideration would be a given, sufficient notice for that would be given.



In other news, today I went into a shop! It was exciting! Normally I get stuff sent, but this particular product was unable to be sent. Except, the internet said it should have been waiting for me three weeks ago, and somehow, it was not. I went in with a note asking about it.

‘Are you deaf or mute?’ the dude said. His name was Jeremy. I held up 2 fingers. He thought for a minute. ‘Mute? I had to think there. That’s good, because if you were deaf I wasn’t going to talk, because like, that would be talking to myself.’

For a while I was so excited that someone asked instead of just assuming that I’m deaf because I have a note. (Things I overhear should be a post sometime. ‘She’s deaf and dumb, shouldn’t be allowed outside,’ was a recent one.) And then I was like ‘wtf, why should I be excited? What’s so bad about talking to a Deaf person?’ He also tried to hand me a piece of paper tow rite things, because, obviously, everyone can write, right? (The doctor tried this. I had to write in the waiting room in front of everyone and of course, that was humiliating. And it was just because she couldn’t be bothered looking up my birthdate on the computer, while my file was open.)

Deaf people who can’t lipread will usually tell you what they need. And, like, to answer the question? Obviously I was able to understand it.