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khizuo [ze/zir] @hexbear.net

Disabled Community Megathread December 16th — December 22nd

Hello! Sorry for the late mega last week. How are my disabled comrades doing?

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.

75 comments

  • I only had 4 autistic meltdowns at work yesterday!

    Guess who just cried while listening to a deathcore song because it sent his ear stimminess into overdrive? Guess who is a completely unregulated fucking mess right now? Guess who recently lowered his "straightness" down from 95% to 92% because motherfucking jawlines exist? This motherfucker, that's who!

    I don't even know what I'm supposed to be doing today and it's my first day off this week. I need to get laundry folded but I really want to finish this website I'm working on too. I haven't gotten the text and such back from the peeps I'm making it for so it's at a standstill.

    I should paint my nails.

    E: I guess this whole goddamn album is gonna make my bain buzzy. Jesus.

  • Hi. It's my first time posting in this community. Lately there is a thought that's been bothering me. Apart from multiple psychiatric diagnoses I have at least 5 other physical problems regarding chronic pain, and as time goes by, more issues appear or they get worse. This makes me paranoid about what would other people think of me: they might think I'm hypochondriac or faking it for attention, laziness, drugs or who knows why.

    Sometimes when I think about it it's almost laughable how fucked up my body is at my age. Like, some people wouldn't believe me if I were to tell them about all the shit I have to deal with regularly, and I would understand them... When you are "normal" it's easy to ignore how one chronic health issue can lead to another one, generating a cascade. I don't expect much understanding coming from those who are part of the "army of the upright" to us "deserters", as Virginia Woolf used to say.

    Does anyone else ever had similar feelings? How do you deal with them?

    • Yeah, I can relate in a sense. Sometimes, because I've come to expect to be dehumanised as soon as I mention that I'm autistic, I just say that I'm disabled if I'm just trying to convey that I'm having trouble with something relevant. The responses of disbilief I've gotten from people are very telling - if you look "normal" enough then you're just faking and being lazy, and are probably a benefit scrounger to boot.

      The way I've dealt with it... well it's kinda hard to treat the symptoms of society as an individual, so mostly I just try to avoid people who are like that as a crude and unsatisfying solution. I just expect nothing from randoms - sometimes people get it, most of the time they don't unless they have first hand experience themselves. In spaces that will listen, I won't shut up about disability, but if it gets seen as me causing drama or that it's more trouble than it's worth, I don't have it in me to butt heads and I just fuck off.

      As for personal relationships, I've internalised plenty of red flags from my various encounters that I'm looking out for. I barely have energy for myself, so it better be worth it if I'm building some kind of relationship with someone. Kinda hard to name specifics though I guess, that's the kinda thing this space is probably ok for - to unpack the ableist bullshit in your life as you're going through it with others who are doing the same

      edit: spwlling

    • I feel this, particularly the parts about problems cascading or worsening, how fucked my body is for my age, and how people would react with disbelief. My current strategy is not telling anyone but my doctor...

      I'm lucky enough to have a significant other who gets and loves and supports me, but if I tried explaining to my family, the best I'd probably get is well-intentioned suggestions to exercise (I already do) or something.

  • How are my disabled comrades doing?

    It's already getting dark and I'm still in bed and haven't eaten anything other than a coffee... Should get on that soon I guess instead of incessantly posting

    • Mood. My pain levels have been manageable these last few weeks, but it's always the paranoia of setting them off. It creates a really bad feedback loop of not wanting to do anything, then not being in the condition to do anything, causing you to not want to do anything.

  • Did nothing all day again only to be confronted with annoying ads telling me to ‘stop bedrotting’. Excuse me advertiser, but I’m bedrotting by choice, because if I don’t then my health condition will get significantly worse.

  • Does anyone else get really infuriated by able bodied people comparing and contrasting the achievements and attitudes of ill/disabled people and using that against you? For instance if you're unable to work/study because you're exhausted and brain foggy from cancer treatment, someone will try to shame you for not working by saying "Look at this person, they are deafblind and they are a lawyer! You aren't as badly off as them, what is your excuse?" Or "Oh, you won't walk far because your in pain/lame from a stroke/whatever? Well this person has no legs at all and ran a marathon, what's your excuse?"

    As well as it being horrible to shame people for being unable to do things, it's so stupid because they contrast apples with oranges. While it's amazing that a deafblind person overcame their challenges to become a lawyer, it's a completely different situation from the cancer patient, who is so tired they can't help falling asleep and can't concentrate on basic tasks, never mind studying for a law degree.

    It's amazing that a double amputee ran a marathon on false legs but that is a different situation from, say, a stroke patient who is dragging a painful leg that doesn't fully work.

    I hate the attempts to enforce cheerfulness on the ill/disabled as well. Like say, you're laying in your hospital bed after cancer surgery crying because you're scared and in pain and some dickhead will show you a news article about a woman who is dying from cancer but so cheerful about it and say "Look, she's worse off than you and she is still smiling and happy. What have you got to complain about? Cheer up."

    • In my experience people will do everything but admit that your situation is hopeless. Maybe it’s idealism where they think that if you just believe in it enough then everything will get better. And if it doesn’t get better then it’s your fault for not trying hard enough.

      • I think a lot of them don't want to accept how luck has influenced their success. They don't want to accept that if they'd had the challenges someone else has had, they wouldn't have been successful either.

    • They do the same thing with other marginalized communities, like POC who complain about missing opportunities get rich black people shoved in their faces. Able people who live comfortably are made uncomfortable by the idea of there being a class of people who are forced to exist in poor conditions due to something they can't control, be it disability, race, sexuality, gender, etc. So instead of addressing the systemic issues of why that might be, they go, "well some disabled people are able to pull themselves up by their bootstraps, why can't everyone? it must be a personal failing."

      Many Americans very much so believe that we live in a meritocracy, and anything that would combat that idea provides too much dissonance. Or at least I think that's what it is idk, I wish they'd stop trying to drag me into making them feel better because the fact i'm suffering makes them uncomfortable... lol

    • imho, you only get to say "it could be so much worse!" about your own situation or the situation of a friend who has asked for comfort

      otherwise, you need to stfu, because you don't know all the surrounding circumstances in a person's life, and you obviously haven't come to terms with the fact that what can seem bearable in one situation is absolutely intolerable in others.

      all of that is just to say that you should completely disregard those people; they lack intelligence, sense, and empathy, and this lack makes their opinions and thoughts utterly meaningless.

  • Aw shit. Just got my SSI notice for what I'm getting paid next year. You're reading the proud post of a comrade who just received a $27 monthly raise. Off I go to spend it all on penny whistles and moon pies!

  • Regrettably, I'm the type of person who as soon as a misunderstanding happens, I quickly start to obsess over the circumstances that created the misunderstanding and seek to change them.

    We were playing a trivia game to review for a final in my class and I was confused by one of the rules after I got something wrong. I spent the entire rest of the class focused not on what we were studying, but the rules of the game and why things happened as they did, and can it be prevented?

    I must be exhausting lol

  • Someone in general megathread linked this page, and it looks rather interesting: https://cleanaircrew.org/elastomeric-respirators/

    Anyone here got any experience with this type of mask? Thinking that it might be worth getting one if it is less wasteful and if it fits more tightly than a regular FFP2/N95. Not sure where I would get one, though, these websites seem to be targeted at medical institutions instead of individuals that want to buy one.

    • I use elastomeric respirators all the time now. My everyday “going out” mask (for when i’m going to a public indoor space that’s going to have a decent density of people in it, i.e grocery shopping or class) is an MSA Advantage 900. Very good seal but it’s not the most comfortable thing in the world, but for the protection it gives I’m okay with that. my less heavy-duty mask (which i wear around my family, when going outdoors, occasionally in public indoor spaces if there’s a low density of people) is a Flo mask. Flo masks are pretty comfortable, they’re somewhat expensive though and I will say that for me the seal is not as secure as my MSA Advantage (it tends to break if i laugh, so I have to try not to laugh very much when I’m wearing it.) In general elastomerics have worked very well for me, it’s been great not having to constantly buy new masks and as far as I can tell I’ve been pretty well protected, but your mileage may vary.

    • i've used the half mask respirator with p100 filters before (3M 6000 in your link) but unfortunately for me i get a bit claustrophobic in them. i normally use aura masks but i recognize that they do break down and they're expensive.

      although my partner actually finds those respirators more comfortable so they still might be worth trying out. they can be found on amazon or ppe suppliers, also hardware stores like home depot.

      some have a cooling exhale valve which stops them from getting too moist on the inside, unlike standard n95s, so very comfortable in that sense. they also just look cool.

      you have to speak very loudly and clearly in them though, they block a lot of sound.

    • I got one but was convinced it would make it too hard to hear me so I wear shitty KN95s :(.

  • From Mastering the Core Teachings of the Buddha: advice on reaching higher levels of awakening

    Executive Dysfunction to Enlightenment pipeline?/hj

    (It definitely sucks, but is low key insightful. Crazy NTs feel like they are “in control.”)

  • Update, the sally anne was actually pretty reasonable and helpful, nothing dumb. I would still recommend against entangling yourself with the social wellfare arm of the megachurch, but they helped put me through to some legal places, have offered some money in future, stuff like that. 6/10 I did not die.

  • fellow autistics (or others who struggle with certain foods) that celebrate christmas (in whatever capacity)- what do you have for your christmas dinner?

    i personally can't eat turkey or pork, but chicken, beef and lamb are ok so i can have a more ""traditional"" roast (though the house is having curry for christmas eve). some friends struggle with all of them so are doing pizza instead

    • American chinese food. My immediate family used to be elaborate, cooking a lot and having big meals, but we stopped doing that as a combination of COVID and it being overwhelming for everyone. Now, we see much less family, have some cookies and other pastries, and I essentially just eat black beans and rice for the main meal. We just chill on Christmas Day itself, and get american chinese food. I'll probably have a sort of Tofu dish, and what's nice about this is that it allows for my sibilings to all pick foods that they want, since they're all fairly picky even if I'm not. They also all love some sort of sugar, so the desserts tend not to be the problem.

      Edit: Deserts are not related, desserts are

    • i have some frozen chicken cordon bleu im gonna make. it's like chicken nuggets but it sounds fancy

  • Having a migraine for the first time in 15 years and I'm not having any fun rn. I hope this doesn't stick around long term otherwise I'm screwed lol. Used to have them every now and then as a kid and one day it just vanished but looks like its back again weeee

  • I spoke to a new therapist and have something lined up for the new year. Now I just need to figure out how to break up with my current therapist. Either way, made some strides this week.

  • Can't believe I had my doo doo day on the day of Winter Solstice ༎ຶ⁠‿⁠༎ຶ

    Wanted to do something nice for myself for making it halfway through the season of depression, but it completely slipped my mind. Maybe I'll have to do something on xmas day like a normie, but I think that recovery timeframe is a bit too optimistic...

75 comments