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Jul. 26th, 2025 01:38 pmI've always presented as fairly smart and competent, and these days I'm acutely aware of how much our ideas of smart and competent really are attached to a specific presentation. Able-bodied too, for that matter: if someone speaks clearly and calmly and doesn't appear to be shaking they're probably ok.
I don't know if this works for me or against me these days. The list of things I can do only sometimes is long. The list of things I can do safely and easily is short. It's easy to think that if I looked a little more impacted I'd get more help, but digging into it more plenty of folks with high impact intellectual and physical issues are, in at least one case, actually doing things like starving to literal death in the care that was supposed to be provided by the gov to help them.
The "am I doing disabled right" and "other disabled people are getting help that I (also) deserve" thoughts are part of the way the complex thread of social and bureaucratic systems atomize us, breaking us down into little categories that fight against each other or ourselves instead of pushing outwards to say: anyone who needs help should get it, regardless of what they do right or wrong, and regardless of whether we think they look bad enough on the surface.
Which is to say, I missed my doctor's appointment two days ago because I can't easily do time anymore. Both reading a clock (translating the visual into an actual time in my head) and the on-the-fly calculations of how long something will take need several minutes for me to actually stop and think through several times, and usually write each calculation down, if I want to be very sure it's right. I'd been having floating blank spots in my vision anyhow, and I was pretty anxious about this appointment. It felt confrontational, because I've been trying to get my doctor to refer me to the gyne for a long time, and last time she said she would, and the person who helps me with paperwork etc called the clinic a couple times and figured out she hadn't, left her a note, and she still didn't. She also refused to do the gyne-related meds change I'd asked her for.
(It occurred to me about a month ago that the basis of this meds change is an ovary-blocker that is part of what's used for gender stuff, usually along with testosterone, but I don't think that's why she's stalling)
Anyhow, I was working really hard to be present and focused and ended up in town way early, stopped to do something from my list, and then ended up at the clinic at the same time as my appointment ended (that is, about fifteen minutes late). My doctor has often been significantly late for my appointments before but I guess this time she was on time.
They offered me to see the walk-in doctor, who would be able to refer me, but... there was a 40 minute wait. I'd left the house early and my vision was still kinda compromised and I explained to the receptionist that if I sat in the waiting room for 40 minutes I'd probably end up on the floor unable to move. She looked alarmed and said I'd better not do that, then.
I've known for awhile I can't access the walk-in clinic here, because there's a long wait or else you go home and come back, and I can't manage either of those. I guess if I made a bed in the back of my truck I could lie down in it while waiting? It's sort of emergency or scheduled appointment for me.
But of course I felt terrible about missing my appointment, more out of principle I guess than out of any thought it might actually have helped. So yesterday I spent a lot of time in the garden. I woke up this morning with really intense chest pain, hard to breathe, you know, all that stuff they have on the list of "go into emerg" and just... I dunno. I seem to be fine now.
But having a ride, either to the doctor's or to and from emerg, would be pretty life changing around these things. A ride would let me get there roughly on time, because "most people" can do time more or less ok. A ride wouldn't leave me calculating if I was going to be conscious and undistracted enough to drive or if I'd use up my whatever in--
Oof. Brain just shut down and eyes mostly too. I wanted to think about this experience but mostly just was able to relay it. There we are then.
I don't know if this works for me or against me these days. The list of things I can do only sometimes is long. The list of things I can do safely and easily is short. It's easy to think that if I looked a little more impacted I'd get more help, but digging into it more plenty of folks with high impact intellectual and physical issues are, in at least one case, actually doing things like starving to literal death in the care that was supposed to be provided by the gov to help them.
The "am I doing disabled right" and "other disabled people are getting help that I (also) deserve" thoughts are part of the way the complex thread of social and bureaucratic systems atomize us, breaking us down into little categories that fight against each other or ourselves instead of pushing outwards to say: anyone who needs help should get it, regardless of what they do right or wrong, and regardless of whether we think they look bad enough on the surface.
Which is to say, I missed my doctor's appointment two days ago because I can't easily do time anymore. Both reading a clock (translating the visual into an actual time in my head) and the on-the-fly calculations of how long something will take need several minutes for me to actually stop and think through several times, and usually write each calculation down, if I want to be very sure it's right. I'd been having floating blank spots in my vision anyhow, and I was pretty anxious about this appointment. It felt confrontational, because I've been trying to get my doctor to refer me to the gyne for a long time, and last time she said she would, and the person who helps me with paperwork etc called the clinic a couple times and figured out she hadn't, left her a note, and she still didn't. She also refused to do the gyne-related meds change I'd asked her for.
(It occurred to me about a month ago that the basis of this meds change is an ovary-blocker that is part of what's used for gender stuff, usually along with testosterone, but I don't think that's why she's stalling)
Anyhow, I was working really hard to be present and focused and ended up in town way early, stopped to do something from my list, and then ended up at the clinic at the same time as my appointment ended (that is, about fifteen minutes late). My doctor has often been significantly late for my appointments before but I guess this time she was on time.
They offered me to see the walk-in doctor, who would be able to refer me, but... there was a 40 minute wait. I'd left the house early and my vision was still kinda compromised and I explained to the receptionist that if I sat in the waiting room for 40 minutes I'd probably end up on the floor unable to move. She looked alarmed and said I'd better not do that, then.
I've known for awhile I can't access the walk-in clinic here, because there's a long wait or else you go home and come back, and I can't manage either of those. I guess if I made a bed in the back of my truck I could lie down in it while waiting? It's sort of emergency or scheduled appointment for me.
But of course I felt terrible about missing my appointment, more out of principle I guess than out of any thought it might actually have helped. So yesterday I spent a lot of time in the garden. I woke up this morning with really intense chest pain, hard to breathe, you know, all that stuff they have on the list of "go into emerg" and just... I dunno. I seem to be fine now.
But having a ride, either to the doctor's or to and from emerg, would be pretty life changing around these things. A ride would let me get there roughly on time, because "most people" can do time more or less ok. A ride wouldn't leave me calculating if I was going to be conscious and undistracted enough to drive or if I'd use up my whatever in--
Oof. Brain just shut down and eyes mostly too. I wanted to think about this experience but mostly just was able to relay it. There we are then.
