journaling on disability
Monday, 20 October 2025
- here I am, sitting next to ~redacted~.
- maybe I should look into rural / local library jobs. or ... ? other low-impact local & remote jobs
- here I am. sitting, awkwardly. can't get comfortable.
not that uncomfortable, I suppose. But... not great, either. >> The pain isn't too bad. Little twinges, have to keep shifting and moving around. A bit in the hands, pinching in neck + shoulder. << What do we want, what can we do?
So often wondering how to survive, wondering what else we can do. But also, so very often, at the end of ourselves. At the edge of our ability, reason, health. Where there is not much left that we can do.
- (doodle of a gaiwan, beneath a scribbled desert bluff, beneath 'MONDAY 20')
- Meng Nian Puehr Coin, 2021? (found a few months ago on sidewalk in front of ~redacted~ (mail desk) )
- lovely medium puehr, medium body, red-black, slightly fishy aroma, very clean & smooth.
- ... but really, what else is there?
I can mend, scavenge, repair.
I can write. Draw. Take pictures.
I can do many things, but...
only ever-so-slowly. tediously. haltingly.
well-as-I-can-manage,
but poorly, and ill.
I do my best, but I do not know how to survive.
(aside, typist's notes - not from journal: she does not need to be told what to do, what else she should try. she has tried almost everything. as she states in a moment. she is, really, just too disabled to manage on her own, and is struggling to accept that. as she has been for years.)
I am ashamed of it. I struggle to believe, to remember -
how many things I have tried to do.
How many jobs and careers I have tried.
-- often praised for good work, for thoughtfulness, kindness, skill. --
and yet -- constantly maligned. bullied.
wilfully wronged and misunderstood, lied about, lied-to. punished. coerced into quitting. used. let-go.
but never because I did anything.
At worst, I was "too slow".
Plenty of other minor complaints, but not about things I ~can~ could change.
Just always convinced I wasn't a good fit
or couldn't do the job, even though
-- as far as I can tell -- those were never true.
Seems more like
I was too strange. Too unpredictable.
Too kind to customers. I did steal -- but not really. I gave away a little extra. Gave food and drinks, helped people find what they needed, sent them to better stores, focused on good-will and helping, rather than profit.
And took home trash, recycling, broken and scavenged things. So, yes. I stole. I broke the rules. I acted unpredictably. But I did my best to serve customers (aside: other people!) well. And coworkers. And generally did my best for the boss, too.
Maybe it's not that I can't
stick with a job. Maybe I just... either get pushed out or can't stay long because I get sick.
I want to work. I keep trying so hard to work.
But it beats me down too much, from every side.
I guess that really is disability.
I've done my best. Fought so hard, despite pain and constant failure. For my whole life. Struggled through elementary school, through to high school. Barely passed, but always failing. Always hurting, sick, stressed, depressed. Bullied by students, teachers, coworkers, professors, pastors, and even some (many) friends.
(aside: one teacher got fired, eventually. not even my teacher, but she walked in on me, exposing me to the whole class, and yelled at me for several minutes, because I got lost in thought on the toilet, in a bathroom attached to her classroom, in Kindergarten.)
Could never satisfy my parents or anyone else.
Tried so hard to satisfy everyone - first of all god, and parents, and whoever was in front of me.
I do have friends. Lots of people think - and tell me - that I'm a good person. Lots of other weird, autistic or adhd or just kind folks sseem to like me and respect me. I have plenty of poor and disabled friends. Most of them seem more-able to baintain jobs or school than I can. But plenty can't seem to work at all. I know plenty who have spouses or caretakers and are on disability assistance from the government. And I should be able to get on that, too. Maybe. It's hard to believe anyone would just... let me survive. Without having to fight for it, without having to be anxious, worried about losing it at any moment.
I am more and more convinced that this is whati I need, though. I need ... do I need to be provided-for? a break from stress, anxiety, my own pain and illness?
(I want to work, to deserve to live, but all my striving led here. Those systems and people failed me, rejected me, and called my best work trash.)
So I am disabled. Not by choice or even by illness alone, but because there is no space left for me. I can do great work - just not every day. And these stresses, anxieties, depression - they are not in me. The pain and exhaustion, the memories are in me. The rest seeps in slowly, as I am beaten-down, poisoned by lies about my ability, about what I deserve. I deserve to live.
- What then can I do? How can I survive? Disability assistance from the government might be possible, though not easy and uncertain. Seems built so that it is full of pitfalls, doesn't want to be relied. on. Wants people to be anxious that it will disappear -- or worse, that it will make people who rely on it live in fear that they miss some hidden rule and be required to pay penalties and repay far more than what they have received.
(aside: - the system's playbook...)
- make medicine more expensive to justify denying care, and to justify clawing back far more than the medicine is worth.
- make doctors' jobs harder, so they can't actually care for people well, so they have to justify asll expenses and withold treatments, so people won't trust doctors, medicines, and will be afraid to seek treatment because it is difficult to follow-through, to justify to 'insurers', or to even get basic questions answered.
- offer 'alternatives' (or) require trying alternatives that don't work, to muddy the waters.
- manufacture 'reasonable' penalties, but over time make them ever-less reasonable and out-of-scale with the actual offences (which are mostly imagined) - thus encouraging more people to try to take advantage of the system, because that's the only way it works for them. then increase regulation, make rules more convoluted and harder to understand. make things harder, but add convoluted exceptions for the rule-makers' friends.
(margin note: Increasing suffering, decreasing effectiveness in the name of efficiency. But really, they worship power, control, and the ability to make others suffer. That's what obscene wealth and power are really about. Making others suffer for you. )
(aside: and of course, the reality is that very few of the people who benefit from this actually do any of this evil stuff. It's mostly done structurally. Whatever happens to increase their concentration of wealth and power. The decisions used to be made by people, but only one evil choice at a time, ignoring the few that it hurts. Slowly moving goalpoasts a few hundredths of a percentage point at a time. Benefitting most of the shareholders, hurting a few. Until most people are no longer benefitted, and no longer considered in the decisions. Until the system harms and kills so much more than it ever helps. Insidious, inhuman, inhumane evil. Wholly- at first - impersonal evil. And then, the more obvious evil comes when those with less power lash out, and the boot of the enforcers - the government, the police, the insurance companies, the banks, and all - attempts to crush the very real threats these organizations see coming at them. all very reasonable. all very understandable, individually. but no less evil for that. wholly evil in aggregate.)
- It is so exhausting. So angry.
Yes, I should 'qualify' for disability. But can I actually get on? Stay on?
Sometimes I am well enough. Ish. Not really, but I look healthy enough, even if I can't keep a job. I can work long enough to lose medicaid and disability assistance, sometimes. (aside: probably not anymore, and not for the last few years) And I want to make things and help people. I do want to do hard things. I want to work, to labor. Just not when I'm hurting or being hurt. Not when I'm sick. Which is ... a lot of the time.
The only other choice I can see is ... what? Finding patrons or partners, getting married? Something like that. Or maybe, just maybe, writing, making art, ... getting enough to get by from those things. (So angry about this shit with Stripe. TOok money, won't let me actually have it without ... so much. I have to trust them with my ID, and lie about what I do in order to use stripe. but they will take other people's money on my behalf. And I was just trying to use something other than paypal.)
(Paypal is also treating me like a business. Might be reporting gifts to the gobernment as income, which could cause problems with my health insurance or disability application.) Damn it. I feel like there is no good option. Not even illegal ones. I guess these systems treat me like this because they want people like me to just die. Sure seems that way. (aside: I'm really not catastrophizing. Just anthropomorphizing systems - what they do is what they do, and I judge them based on their effects, not their intent.)
(margin note: Observability / Logging decreases efficiency and effectiveness. Should be used as little as possible. )
- I don't want to give in. I don't want to kill myself or let these systems hurt me or people like me. But I am so tired of fighting. Tired of meds being taken from me, so I get even more sick. I'm without arthritis meds (biologic anti-inflammatories) right now because ... an insurance fuck-up, or something. I don't know what happened, or how to fix it, and the doctor's don't seem to know what to do either.
- ~redacted~
I feel less muddled, but very sad.
Clear, centered, awake. But... so much pain. I don't mean physically, though there is plenty. But ... the pain of certainty that life is unlikely to get easier. That I am so damn tired of trying. I know that I am likely to keep suffering. That I may die soon -- by starvation, illness, at the hands of the government or by anti-trans, pro-fascist groups. I may disappear to a death camp or a work camp or a re-education camp. I am, after all, a rebel. A threat.
Paranoia, perhaps. But the ~redacted~ gov't has, apparently, declared people like me terrorists. Declared war on anarchists, communists, gender rebels, and the disabled. Very well. I am an outlaw, though I've tried so hard to be good.
Perhaps I am sprialing a bit. (doodle of a shaky, very fine spiral) Though we do return often to the same worries.
- I've done everything right, as well as I could. In fact, I often did everything right - better than anyone else around me, and still failed. I tried so hard. Kept pushing through so much pain and exhaustion, through so much fog. When it was destroying my body and mind. It didn't matter. They said if I was rightous, if I did my best, I would save up treasure in heaven. But they acted like that meant I would have a decent life. It was a lie. I was already good. And I suffer whether I do good or the things they called sin. What then? What now?