Ablebodied peoples idea of what ableism is is so performative and out of touch

Like they'll tone police but won't wear a fucking mask

I talked with some union people at my workplace, and I asked them if they plan to resist the full return to office that is coming. I shit you not, they welcomed the news (they were clueless) because "we will communicate and work better" [sic].

They only really care about their higher wages and people like me can fuck off and die I guess. I don't know why I expected solidarity from neurotypicals. It's shit like this that completely discourages me from organizing

I am currently in "dead fish flopping about gasping for air" mode. I'm lying flat almost all hours of the day unless I manage to somehow force myself into a sitting position (usually just to eat food). I've been skipping most of my classes because I'm too tired to crawl out of bed, let alone get myself across campus and into a chair where I have to sit upright for over an hour. I'm brain fogged to the point where trying to do anything besides watching mindless videos is too much exertion for me. I hate this so much. I feel utterly useless because in my current state, I essentially am useless. Every day is a drag yet also too quick at the same time. I just wish I had my old energy back.

Living is a job I can't clock out of why is everything so hard

I want all "it was just a prank" excuses to be invalid forever. It has ableist implications IF it is genuine, which it NEVER EVER IS, so its just reactionaries being cowards

I hate being reminded of the fact that I can't perform fine motor functions. I've gotten used to it when journaling, even though I can't really read my handwriting, but I was trying to do a lab today and just kept fumbling and messing up the setup. I couldn't help but constantly apologize to my lab partners almost constantly, and once they finished with their portions they had to help with mine, and I essentially had to step back and do other parts of the lab work. Ugh

Too autistic for the autistics strikes again

Hi y'all

u receive : back problems & nerve pain

i receive : hug

My workplace intends to enforce full return to office to improve our discipline, meaning no scheduled remote days but we might be able to get some as needed? Not clear enough.

This is probably going to destroy me, I don't know if it is some autism sensitivity but office days tire me to the extent that even with 3/5, I often feel so miserable that I take a paid leave just to not go there. I don't understand how neurotypicals do it every day, it seems impossible to me

the doctor agreed that EDS testing was worthwhile and referred me to a geneticist 🎉

and I only cried a little bit during the appointment so 🎉🎉🎉 😂

she was mostly very nice, but there were a couple of moments where I could feel her getting skeptical and I started getting overwhelmed, and I'm very glad I had the pleasantly stoic @shadowinlight@hexbear.net along to jump in to help explain things

Unfortunately I don't have the energy to put together some info for the mega this week

If you want I've just uploaded the audiobook version of Exile and Pride Disability, Queerness, and Liberation by Eli Clare to TankieTube and there's a PDF copy of the book available here. I haven't read it yet but it looks interesting.

Here's the publisher's synopsis:

First published in 1999, the groundbreaking Exile and Pride is essential to the history and future of disability politics. Eli Clare's revelatory writing about his experiences as a white disabled genderqueer activist/writer established him as one of the leading writers on the intersections of queerness and disability and permanently changed the landscape of disability politics and queer liberation. With a poet's devotion to truth and an activist's demand for justice, Clare deftly unspools the multiple histories from which our ever-evolving sense of self unfolds. His essays weave together memoir, history, and political thinking to explore meanings and experiences of home: home as place, community, bodies, identity, and activism. Here readers will find an intersectional framework for understanding how we actually live with the daily hydraulics of oppression, power, and resistance. At the root of Clare's exploration of environmental destruction and capitalism, sexuality and institutional violence, gender and the body politic, is a call for social justice movements that are truly accessible to everyone. With heart and hammer, Exile and Pride pries open a window onto a world where our whole selves, in all their complexity, can be realized, loved, and embraced.

If you like the sound of it, you're welcome to copy this along with the links into the body of your post as a substitute for other content. If you do I'll delete this comment so it's not clogging up the mega unnecessarily.

Folks, this is it... I finally got prescribed Vyvanse after six months of just fucking around with Wellbutrin! I'm super excited and eager to see what happens!

But that's not what I'm here for right now. I've been playing with a story in my head for a very long time and I really want to start writing it. The thing is, the way I envision one of the characters includes the fact that she's hard of hearing. I want to be as respectful as possible of such a person's life experience and I want to research what everyday life is like for someone with impaired hearing. Can you folks suggest any sources for me to do some reading up on the topic? Anyone who talks about their life without hearing? Any interesting stories with a deaf/hard of hearing main character?

I can't believe this. I'm booked in to have a minor surgery on my feet to clear up infected skin that has failed to respond to other treatments. It's on the NHS so the surgery is free, but they just told me I have to pay for a pack of dressings to take home (as the wound needs the dressing changed every day and the pack apparently contains something to keep the dressings dry in the shower.) This pack is bloody £37, and I have to buy two as both my feet are having the surgery. I can't be the only one who thinks these packs should be free along with the surgery? And where am I supposed to get £74 while going through a benefit appeal? Just when I think life can't get worse, it finds a way. Being ill/disabled is so bloody expensive!

i have to go out today. i've had horrible neck pain for days but there is medication at the end of the drive if i can manage it that will help. and gotta get food n stuff too. but it's so frustrating. life is constantly like need x to do y, need to do y in order to acquire x

Been on 20mg ritalin for about a week now, and I'm still struggling just as much as before Learned about a different type of ADHD treatment called interactive metronome, and I might try that if the medications don't work out.

Really feeling the call of the abyss lately. How can I have hope for anything when we can't clear the very simple bar of pandemic mitigation? I'm so tired.

In my mind I like fall/winter but my mental and physical health really don't

A lot of my hobbies are more popular with older people and it does hurt my heart a little when I see that they can do them more often and for longer periods of time than I can :/

For some reason after I wrote the ":/" the first suggested word in my phone was "gangstalking" lmao

I'm considering the fact that I'm some sort of strange AuDHD intovert/extrovert. Like, I'm exhausted after doing things with others, but is that just because I'm doing stuff? Because when I'm not masking, I seem to gain energy by being with others. Even taking the time to post more today, and I notice I'm not super exhausted right now, at the end of the day when I usually am by this time.

Don't mind me, just a walking contradiction that keeps racking up contradictions the more time goes on

I finally got to get back to FNB this last weekend and we all hung out and talked a bit after we ran out of food(always a good sign) and I feel like a super judgey bastard because, originally, I was like "I'm probably the furthest left person here." I guess I was just going on internal biases due to where I live, but turns out, a lot of those running it are anarchists and other flavor of socialst. I was both humbled and extremely happy that I got to shoot the shit about the current political climate with handful of IRL legit socialists. I love it. I'm a bit shamed that I just assumed. But I was in the presence of people that have been at this since the 90s. Super fucking humbling.

Also we are all introverts that suffer from major social anxiety lol.

One of them that I actually met a few weeks ago at my vegan food truck place, was introducing me to her friend and threw me off because she asked me for my pronouns. Def not used to that IRL because I'm pretty male presenting but it was the first time I got to try out "he/him but sometimes they" since I've been doing some personal soul searching and think I might be demi or agender. I've always been male presenting cishet but I've also never really cared about my gender all that much and do "girly stuff" that I like. And a lot of "guy stuff" I kind of hate. I'm not really sure where I land but I'm gonna talk more with my therapist this week about it and try to figure it out. I might just be suffering from patriarchal bullshit.

Other than that I do have training officially lined up for this weekend so we might have a tiny bit of financial security coming soon. I have a job interview for that Facebook/Meta for a software position that I'm still hoping to get some study time in on. I'm not really qualified for it but I'm not gonna turn it down if they offer it to me. Not gonna keep my hope up though because I can't really afford to do that mentally anymore.

Anyway, I hope everyone's week goes great. Politics right now is a fuck so don't forget to take care of yourselves.

::: spoiler medication ramble i succeeded! i got my prescription. i got to the pharmacy and found my prescription had run out, but its a small town and you can usually get medical stuff sorted out the same day so i went to the doctor's surgery and the reception person promised to get it sorted before the pharmacy shut. and it turned out it worked in my favour because i went to run errands and went back and i got to the pharmacy just before it closed and it turned out the doctor had also renewed my sleeping pills that i didn't ask for

it's already helping my neck. not enough, i might take more in a bit. but i'm so glad. particularly since we're expecting another bad storm and won't be able to drive into town for several days. hopefully i'll be able to do some storm prep after resting. :::

I’ve been doing a lot of anxiety inducing stuff lately in the hope that I’ll get used to the pressure and learn to deal with it. Will let u guys know in a few weeks or months if it works or if I get burnt.

Well, I got a couple of messages of support last week about the behaviour of my therapist so I thought I'd give you all an update. I mentioned how I'm going through a benefit appeal, and also having mental health therapy for depression and anxiety, and this therapist is worse than useless but I don't dare to quit because the DWP (benefit assessors) will use it against me, they've done it before, used me not having treatment for a condition as an excuse to stop my benefits. Anyway, I mentioned how I'm struggling to keep going to the therapy appointments because they are so useless and stressful and I have a lot of other medical appointments to keep up with too (oncologist, endocrinologist, stroke clinic, ophthalmologist, physiotherapist, neurologist, etc) so having this weekly useless therapy appointment is just an extra stress and waste of time. I mentioned this to my therapist and she got offended and told me to just quit therapy if I don't want to go. When I explained that the DWP will use that as an excuse to permanently stop my benefits and I'll end up homeless and permanently destitute, she didn't care at all and said "benefits aren't a good enough reason to have therapy."
Well anyway the update is that I missed an appointment with her and I've been feeling more unwell than usual this past week as a treatment I was given by the neurologist has worn off now, so the therapist agreed that this month we can just have one appointment instead of the usual 4 and see how that goes. I just really want her to let me have one a month until January, when the therapy comes to a natural end. That way I've completed the 6 month course of therapy rather than quitting halfway through and the DWP won't be able to use it against me. I really hope she doesn't expect me to have the full 8 sessions that are left after that. I hate this therapy so much, it's absolute crap. She's such a crappy therapist she can't even think of things to do in the sessions and tries to make me think of things to do. I once told her I was interested in trying meditation so now 20-25 minutes of each session are her doing a rubbish mediation where she talks complete nonsense while I have my eyes closed. Then she gets out crayons and tells me to draw pictures of whatever I'm feeling. Then she gets out a diagram of a human and tells me to colour in whatever parts of my body hurt that day. The end! How is this meant to help me? My problems are that I'm ill from cancer and the effects of it's treatment, I'm learning to walk again and adjusting to becoming partially sighted after having a stroke, and I'm living in poverty, always fighting benefit appeals and struggling to get enough to eat and keep a roof over my head. No therapy will fix this but this excuse for therapy is particularly bad. And I can't quit or it will be a big strike against me in my benefit claim. People are meant to have a free choice about whether to accept medical treatment or not but there is no free choice when you'll be made destitute, homeless and starving in retaliation for refusing the treatment. And this shitty therapist refuses to understand how badly I need a roof over my head and food. Someone here recommended I talk to her about Maslow's hierarchy of needs to try to get her to understand, I will do that at the next appointment and see what she says. I'll let you all know how that goes.

Things are louder than usual today

Nerve pain is fucking bullshit FOOT Y U NO STAY FINE?

Can anyone tell me about air filters? No energy to go look for information

Heard they can provide some protection from the COVID in an indoors space? How effective is that? I will probably move back to my family soon, they go outside a lot more often and I worry about catching COVID from them.

How big is the air filter? Do you just put it in a corner of the room or what? Are they noisy?

chat how do i stop my body from injuring itself by being perpetually tensed up

Re: fine motor function. I've been really busy lately, extremely exhausted, and I can barely do anything involving fine motor. I'm struggling to type this right now, I type fast and am used to having to backspace, but this is taking me so much longer to type right now. Literally every couple of words. Was really bad today when I kept messing up and bumping the trackpad of my computer while taking notes. It would move the cursor to a different spot and then mess up other sections of the notes, which I had to take time to fix.

Sorry for venting yet again, it's just frustrating, because I don't feel like there's much I can really do to help with the problem. I won't do this again this week, I promise

Anyway, should really post something positive at least. I'm somehow managing my really large load of coursework right now, although it's probably why my spoons are as depleted as they are.

I think you commented in the old mega right on the buzzer @HexaSnoot@hexbear.net. Bringing it over here to answer:

(About Maslow's) It's individualistic and a cooptation of better concepts and it's just gross but your run of the mill therapist who just scraped by to get their qualification is almost certainly going to like it.

What are those better concepts?

Power isn't given, it's something that is taken.

This is particularly endemic in how privileged people talk about "giving people a voice". Please stfu.

Lol Everything onwards from this really helps me understand more about power dynamics. Thank you.

People tend to graduate from Maslow's Hierarchy (though far too few) on to things like Bronfenbrenner's Ecological Systems Theory:

While that one is better and it doesn't fall trap to hyperindividualistic nonsense, I think this one falls into a different trap: "the net that catches everything catches nothing". I could talk about the arrows but there's no fucking point. Either point them somewhere useful or if you can't do that then your diagram is designed incorrectly or you are being patronising of your audience.

I'm partial to the Dahlgren and Whitehead model, despite its flaws:

It's simple enough to grasp without requiring an hour long lecture first. It provides key information without listing every goddamn detail (Is the chronosystem in Bronfenbrenner really necessary?? Do you genuinely need to represent the flow of time, that the things in the present come from the moment that directly preceded them and so on? [Is it too late to do a coconut tree joke? Would that be in poor taste now?] Do you really need to tell people that time affects everything? Why did you feel the need to call it a chronosystem - was "time" or "history" too simple? Would a two-sided arrow with the downwards poiting one labeled as "past" and the one pointing to the surface layer labeled as "present" be too simple and intuitive to grasp? What, did you run out of space to talk about the flow of ideas and neuronal networks and the thermohaline conveyor and intra-religious conflict fuelled by schisms?)

The problems with this one are there too - it's explicitly depoliticised, the green part is okay but it's not really very cogent but it's more like a scattershot of things that Dahlgren and Whitehead tried to list 10 factors for but they only managed to phone in 8 before calling it good; agricultural production factors matter yet manufacturing production factors are absent (tell me you're living in a so-called "post-industrial" country without telling me), the centre doesn't show it in this one but other ones are revised to have a family to make it less individualistic and yet in doing so it either ignores intrafamiliar factors or it just kinda shoehorns them it "There - a family. Now you fill in the blanks!" and it either centres the nuclear family (Can you tell which countries this is made for and which type of country it was made in yet?) or they put grandma in so she can be in the nice picture as well before they shuffle her back off to the nursing home.

i did thing. i feel just enough strength to do more thing. things are important. i am proud of myself.

it really sucks when ur disabled but if u don't get on with the things then eventually it will be catastrophic so u just gotta do the things, but also be careful not to push urself in such a way that it makes u worse. i even went to a series of classes on pacing that were offered by the health service a few years ago and i put it into practice best i can. but there's just something about like the material conditions of life, and how sometimes there is no chance to rest.

🌰

i would really like to get an autism diagnosis, because it feels like it's the root cause of a lot of my social issues, and i would really like support for dealing with that. and it might help towards getting disability aid ig but my doc said i should qualify without it

but the wait time for adult diagnosis is a year

::: spoiler publicly journaling a little sitting here basically fighting the part of my brain that wants to scream about this dumb website. i've settled into a calm fog that i assume is just me putting off the emotions until it's appropriate to deal with them :::

The chronic pain is paining these past couple weeks. Moving up and down the whole left side of my body, every day it’s a fun guessing game of which area will be killing me when I wake up. Sometimes it switches over to the right side just to keep things interesting. The usual mitigations (heat, self-massage/myofascial release, stretching, NSAIDs) are not mitigating and it’s grinding me down. Idk what triggered it. Could be anything or nothing 🫠 I think it’s the combo of colder temps, financial stress, and the political situation here in the US.

I wish I could exercise more!! I was getting back into a good routine and it was helping my mental health a lot and in some ways seems to help my body feel better but then in other ways makes it worse.

New mega is up everybody! https://hexbear.net/post/3924512