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khizuo [ze/zir] @hexbear.net

Disabled Community Megathread - November 11th, 2024 to November 17th, 2024

Unfortunately I don't have the energy to put together some info for the mega this week, hopefully I can pull together something for next week though. As always, we ask that in order to participate in the weekly megathread, one self-identifies as some form of disabled, which is broadly defined in the community sidebar:

"Disability" is an umbrella term which encompasses physical disabilities, emotional/psychiatric disabilities, neurodivergence, intellectual/developmental disabilities, sensory disabilities, invisible disabilities, and more. You do not have to have an official diagnosis to consider yourself disabled.

Mask up, love one another, and stay alive for one more week.

129 comments

  • 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

    • Bless you, I find it's hard to not put myself down when I'm not able to do things that seem so simple for those around me

  • 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.

  • 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

  • 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?

  • 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.

  • 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.

    • God that sounds fucking awful. I've had my share of shitty therapists, but I don't think I've ever encountered someone this awful. Where I'm at now is a clinic that focuses on intersectional problems, so that's why probably why they're better at helping me with my physical disabilities. My current psychiatrist didn't even hesitate to write recommendations to Social Security.

      Honestly it sounds like your therapist should just get the fuck out or learn to do self-crit (as much as liberals can lmao) because nothing you've requested is unreasonable. I'm guessing she hasn't even brought up Cognitive Behavioral Therapy?

      • I don't think she does this, and it wasn't on offer from the NHS. 5 years prior to this I was given DBT on the NHS from a different therapist, who was even worse than this one. The DBT therapist just made me write lists of why I shouldn't feel depressed or anxious and why I shouldn't commit suicide, and look at those lists whenever I felt bad, to make me feel better. That was the entire therapy! And she admitted that she wasn't even qualified yet. I've totally given up on therapy actually helping me, it's all shit. I'm only toughing it out because of my benefit claim.

  • 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.

    • That’s nice. I hope to find cool people like that again.

      Gender isn’t real. My theory is that when we autists reflect on the idea our bottom up processing makes it easy to experience that emptiness, whereas NTs will project their social standards and absorbed ideas as truth. Nothing is bad about not caring about your presentation and such, but if you find that the patriarchal mold has constrained you and trying other things makes you happier then that’s great too.

      Good luck.

      • I'm basically a gender abolitionist but I hesitate to say that even in disabled spaces. I mentioned as much in one of the many weekly "I don't feel like my assigned gender" posts on /r/autism and someone got all spicy saying "here we go with patriarchy bad again" and I just didn't have the energy for it lol. They were trying to defend gender from the perspective of feminism activism, but like if the patriarchy didn't exist, social constructs like gender wouldn't exist, therefore, we wouldn't have a need for activism in the way it exists currently. Basically gender is a tool by the patriarchy to arbitrarily assign oppression to certain classes in society and now I can't paint my fingernails pink without chuds side-eyeing me lol.

        But that's all to say I don't really wanna minimize our comrades who are on their own gender journeys. I just want people to be allowed to be happy as the people they are. I just think I'm sometimes kinda "girly" feeling but I donno what that means.

  • 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?

    • look up corsi-rosenthal boxes when you're feeling up to it. the tl;dr is that you use a/c filters and a box fan. my understanding is that they are very effective for small, enclosed spaces.

      if noise is a concern i have seen some made with tiny filters and desktop pc fans and the like. the main takeaway here is that they're relatively easy to make and afford.

  • 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

    • I've been trialling a drop-in peer support space run via the game Webfishing. I'm auDHD and I reasonably knowledgeable about the ins-and-outs of autism and late diagnosis.

      You're welcome to join the ping list for when I notify people of the upcoming drop-in peer support space so you can chat with me or whoever else is in there, if you're interested.

      Currently I've only really been promoting it on the neurodiverse comm so the autistic power levels of the server are off the charts

129 comments