Disabled Community Megathread December 2nd, 2024 — December 8th, 2024
This week in people of interest: Marta Russell
Marta Russell proposes a theory of disability that rejects arguments about culture and identity, instead charging that specific systems and values embedded within capitalism are the primary driver of (and justification for) legal frameworks sanctioning the institutionalization and economic exclusion of disabled people. A key question for Russell was: What do systems of production and wealth accumulation gain from the way in which disability certification frameworks are constructed and public benefits allocated? Centered in an analysis of means-testing, war spending, administrative burdens, and underfunded social safety net supports, Russell’s work showed how a society obsessed with optimization, efficiency, and cost-benefit analysis had created a vast network of laws and institutions that worked together to perpetuate what she called “the money model of disablement,” better known as “the money model.”
The money model, best articulated in Russell’s 1998 book, Beyond Ramps: Disability at the End of the Social Contract, posits that disabled people are not, as they are often framed in dominant culture, a “burden to society,” but are actually a valuable resource. As Russell explains: “…persons who do not offer a body which will enhance profitmaking as laborers are used to shore up US capitalism by other means.” Disabled people are a nexus around which the capacity for surplus labor power can be built (often financed in part by federal money)—whole sectors of our economy have sprung forth from the money model, which has normalized the commodification of things, systems, and places that maintain disabled bodies in pursuit of squeezing profit from the money which passes through disabled people towards their survival and care. For example, nursing homes, Russell argued, are not places of rest and comfort, but a strategy for commodifying the “least productive” so that they can both be “made of use to the economic order” and free up the labor supply of those who love and wish to care for them. This system benefits neither the workers nor disabled people, only what Russell called the “owning class.” US disability policy, instead of being oriented around supporting the needs of disabled people, sanctions and facilitates the capitalist capture of nearly all aspects of disablement, impairment, chronic illness, and disability, including the way that “reasonable accommodations” are commodified (as explored by Ruth Colker in her essay for this symposium).
Russell was not just a theorist but also was a long-time disability rights activist. Throughout the 1980s, 1990s, and 2000s she was involved in disability advocacy and organizing with ADAPT, Not Dead Yet, and the ACLU. Her efforts focused on policy interventions like assisted suicide laws and SSDI cuts, campaigns that challenged the many stigmatizing portrayals of disabled people sold to the public via the charity industrial complex, and more formal organizing and direct action with ADAPT agitating for home and community-based services as alternatives to nursing homes and other institutions of warehousing. As Nate Holdren argues in his piece for this symposium, Russell’s significant contributions to both disability theory and Marxism were crucially informed by her work in social movements. This connection between theory and praxis is reflected not just in the subject matter of her work, or in her citational practices, but also in the empathy, clarity, and rage with which she argues for the need for the left to begin to engage in a broad refusal of the economic valuation of life.
Russell’s political writing was extensive, covering the topics she organized around as well as more explicit political economic analysis of US policy and critique of the disabling effects of the then-expanding criminal justice system. Russell’s work was also highly critical of the liberal disability rights movement, arguing that disability rights discourse would benefit from embracing leftist thought and political economic analysis. Russell’s approach rejected the court-oriented civil rights strategy that was widely celebrated by liberal disability organizations and activists in the post-ADA era. This strategy, she argued, only sought to tamp down the violence caused by the ways that the state interacted with disabled people; instead, she focused on the political economic, not merely the “cultural” forces, driving systemic oppression of disabled people—an approach on which Jules Gill-Peterson expands in her essay for this symposium.
The lack of exposure that Russell’s small yet incredibly powerful body of work has had cannot be overstated. Her books are hard to find, there is one major printed collection of her essays, and one important book of essays about or incorporating her work. Until Capitalism and Disability: Selected Writings by Marta Russell was published by Haymarket Books in 2019, no comprehensive volume of her collected writings existed, nor was there broad citation of them within disability studies or law. Three years prior, when legal scholar and her former collaborator Ravi Malhotra edited Disability Politics in a Global Economy, an important anthology dedicated to Marta Russell’s memory, it was one of the first times Russell’s work was broadly celebrated within a purely academic context.
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"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.
I can't believe the letter I've just had from my doctor's surgery, I am furious. I have suffered from severe migraines for years, and have had one stroke already. (people who get migraines are 3x more likely than the general population to have a stroke.) I'm at risk of another stroke. I've been prescribed a drug called topiramate for a while now, to reduce the frequency and severity of the migraines.
I've just received a letter from the doctor's surgery saying that, due to new guidance, as topiramate can cause birth defects, all women of childbearing age who take it MUST be put on birth control, regardless of whether they are sexually active. Which, as I'm sure you can tell from my username, I am not. I don't want to be pressured and bullied into taking contraceptives. Hormonal contraceptives have a lot of side effects, including increased risk of stroke. Apparently the wellbeing of a foetus who will never be conceived is more important than the wellbeing of a woman who actually exists! Even non-hormonal contraception is something I don't want, most of it involves embarrassing and painful procedures that I do not want to be subjected to. And quite frankly, it's the principle of the thing.
So I am going to have to stop taking this migraine med, which will be awful for me, because all the other migraine meds either don't work for me, or are unsuitable for stroke patients. I've even had nerve-blocking injections in my head from the neurologist which only worked for a couple of weeks, then my migraines came back with a vengeance. But no, a hypothetical foetus matters more. Is this not blatant sexual discrimination? I am so angry.
EDIT: You know what is extra infuriating? The letter didn't even offer the option to choose to come off the topiramate, or keep it and take the contraception. The letter just demanded that I go on contraception immediately. No "if you'd like to keep taking the topiramate please make an appointment to get contraception," just a very rude and authoritative demand that I make an appointment to be put on contraception immediately.
EDIT2: I've just read the letter more thoroughly. It says the problem with topiramate is that the babies of women who take it while pregnant are at a higher risk of ADHD and autism. Just think about what they're saying. They're saying ADHD and autistic people are so unwanted by society that it's better to force women to go without medication they need, or force them to take meds they don't want and that could have detrimental side effects for them, than let more autistic/ADHD people come into this world.
Following recommendations by the Commission on Human Medicines, the MHRA – the medicines and healthcare regulator – is advising that topiramate should no longer be prescribed for epilepsy during pregnancy unless there is no suitable alternative treatment.
So if there's a way to still prescribe it when someone's pregnant, there must be a way to get around this if you're never going to become pregnant. Unfortunately it sounds like your doctors don't believe in listening to you.
And to add another insult Topamax actually makes birth control less effective.
It can take a long time to stop taking topiramate, too. I was lucky enough to have had no trouble quitting cold turkey, so it is possible, but I've heard stories where it's taken people months to taper without causing problems.
Do your migraines come with aura?
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DisabledAceSocialist [comrade/them] - 1.0yr
I've just read that link. Mothers who take topiramate may give birth to babies with a 2 or 3 times higher chance or ADHD or autism. Not only are they going to make my life a misery with this, it sounds like eugenics. Can't let anyone give birth to a baby that society doesn't consider perfect! This is some nazi shit.
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DisabledAceSocialist [comrade/them] - 1.0yr
Yes, they come with all sorts of visual disturbances, from geometric patterns, to looking like I'm looking through a broken mirror, to blind spots, to total blindness.
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Wertheimer [any] - 1.0yr
You said "people who get migraines are 3x more likely than the general population to have a stroke" - and if I remember correctly the likelihood is significantly higher for migraines with aura than those without. Goddamn.
Sexual activity is a migraine trigger for many people. If the doctors refuse to understand what asexuality is, maybe instead they'll believe you if you tell them that sex is a known migraine trigger and you already refrain from that so as not to have another stroke.
I'm sorry, I'm grasping at straws. I don't know how these people think, so I don't know how to persuade them ... I'm just trying to think of what I'd say to my doctor if they were attempting to force me into unwanted medication. I did have a somewhat similar (but not comparable, what you're going through is something else) experience with a neurologist a while back. They refused to refill my rescue medication (which helped) if I stopped taking their preferred preventative medication (which made things worse, and also made me want to die). I had to go without, and find a new doctor. I don't know what I would have done if I were in a more risky situation. It's horrible, when they start holding you hostage like this. I hope they let you appeal.
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DisabledAceSocialist [comrade/them] - 1.0yr
Thanks so much for the support. I think I need to try and write a letter explaining my position. Maybe someone here could give me some tips for writing it?
It's so infuriating as well because I haven't had sex since 2006. The only reason I even did it before that is because I had never heard of asexuality. I couldn't understand why all my friends were so sexually active but I had no interest. I thought there was something wrong with me, I only tried it to see if that would get me into it. It did not. Quite the opposite in fact. I haven't had any type of sexual contact in 18 years now, and never want to again. On top of this, I think I started going through the menopause this year. My previous regular, heavy painful periods have become light, painless and erratic. I don't even want to tell the doctor I think I'm going through the menopause in case they try to force me to have more medical tests, go on HRT or whatever. It's not bothering me and I'm happy to let nature take it's course. Basically there is no chance in hell of me getting pregnant unless god decides I'm to birth the next messiah, an immaculate conception happens, and if that happens, I'll have an abortion.
This fight against the doctor is just the last thing I need, I already have far more on than I can cope with.
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dustbunnies [she/her, comrade/them] - 1.0yr
I don't even want to tell the doctor I think I'm going through the menopause in case they try to force me to have more medical tests, go on HRT or whatever.
this might be the key to make them not try to get you to take contraceptives – peri- and post-menopausal estrogen is dangerous for people who get migraines with aura, because it greatly increases the stroke risk.
I did a bunch of research on this a few months ago – if it would help you to have links to the studies I found, please let me know ❤️
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DisabledAceSocialist [comrade/them] - 1.0yr
yes, thank you.
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dustbunnies [she/her, comrade/them] - 1.0yr
sorry for the delay – I coulfn't find the list I made, so I searched again 🤦
this PubMed article is the most comprehensive thing I found:
Does Combination Estrogen-Progesterone Contraception Increase Stroke Risk in Women With Migraine?
No studies have been adequately powered to directly compare stroke risk in migraineurs with aura taking combination estrogen-progesterone contraceptives with that of migraineurs without aura taking combination contraception. Many studies have reported increased odds of stroke in migraineurs who use combination hormonal contraception, particularly among active smokers. Reported ORs for ischemic stroke in migraineurs using combination contraception range from 2 to nearly 14, compared with nonusers. A recent systematic review and meta-analysis of 9 studies found that the pooled RR of ischemic stroke in women age < 45 years with migraine ± aura was 3.6, and the risk of ischemic stroke was further increased to 7.2 among women currently using oral contraceptives.
A case-control study by Tzourio and colleagues compared 72 women aged 18 to 44 years presenting with first ischemic stroke with 173 hospital-matched controls. They found the odds of ischemic stroke were nearly 14 times higher in migrainous women using oral contraceptives. In a pooled analysis of data from 2 US case-control studies, Schwartz and colleagues studied 175 women aged 18 to 44 years with ischemic stroke and 1191 controls. They found that women with a history of migraine and current low-dose contraceptive use (< 50 µg estrogen) had twice the odds of stroke compared with nonusers of combination contraception. Chang and colleagues compared 291 women aged 20 to 44 years with ischemic, hemorrhagic, or unclassified arterial stroke to 736 age- and hospital-matched controls. They found that women with migraine using low-dose oral contraceptives (< 50 µg estrogen) had nearly 7 times the odds of ischemic stroke, and this risk increased nearly exponentially if the women were smokers. Another case-control study by MacClellan and colleagues examined the effect of smoking on stroke risk in migraineurs, comparing 386 women ages 15 to 49 years with first ischemic stroke with 614 age- and ethnicity-matched controls. This study found that migraineurs with aura who were current combination contraceptive users and smokers had 7 times higher odds of stroke compared with migraineurs with aura who did not smoke and did not use oral contraceptives, and 10 times higher odds of stroke compared with women without migraine who did not smoke and did not use oral contraceptives.
sadly, in a section about progesterone:
Although studies are limited, there is no evidence to suggest that progesterone-only contraceptives increase the risk of stroke, even in women who have multiple risk factors (including age µ 35 years, tobacco use, and migraines with aura). The World Health Organization (WHO) considers progesterone-only pills, implants, intrauterine devices, and injectables to be Category 2 for women who have migraines with aura, regardless of a woman’s age, smoking status, or comorbidities. There is general consensus that progesterone-only contraceptives are safe for use in women who have migraine with aura, even in the presence of other risk factors for stroke.
and this other article (that I didn't come across in my previous search) asserts that
Combined hormonal contraceptives are contraindicated in women who have migraine with aura, in whom these drugs can increase the risk of ischemic stroke. However, this contraindication is based on data from the 1960s and 1970s, when oral contraceptives contained much higher doses of estrogen. Stroke risk is not significantly increased with today’s preparations, many of which contain less than 30 μg of ethinyl estradiol. Further, in continuous regimens, ultra-low-dose formulations—those that contain less than 20 µg of ethinyl estradiol—may help prevent menstrual migraine and reduce the frequency of aura.
so it might not be as dangerous as I thought. ReadFanon's suggestions about saying the side effects are intolerable might be a better route 😞 sorry to let you down.
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roux [they/them, xe/xem] - 1.0yr
Can you fight this? You def shouldn't be forced to take a med against your will.
If worse comes to worse, and you get BC pills, just don't take them maybe? My partner gets free BC and she ended up stockpiling them because she doesn't take them. Why she keeps going back and getting her next re-up after it's filled instead of cancelling, idk. But case in point, just toss them or flush them or maybe find someone that needs them.
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DisabledAceSocialist [comrade/them] - 1.0yr
As far as fighting it, no. I don't have the strength. I am already fighting a benefit appeal, struggling to get enough to eat while having cancer treatment and recovering from a stroke. I have reached my limit, I can't fight anything else.
The problem with pretending to take BC pills is that I'd probably have to have extra monitoring. Since I'm a stroke and cancer patient I already have to have a lot of regular health checks, if I was put on a med that increases stroke risk they'd probably barrage me with even more check ups and blood tests, maybe even see via blood
tests that I'm not taking them, idk. But thanks for the suggestion, I will consider it maybe if there's no other way.
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Anvil_Lavigne [she/her, they/them] - 1.0yr
::: spoiler drugs
psilocybin can be used to make even cluster headaches manageable, i don't have any hard data on this at hand, but my ex suffered from it & apparently it's p common for folks to be recommending it in their intended social / support groups, so naturally she wanted me to hook her up. just a modest dose was enough to keep it at bay for a couple weeks, after which she'd microdose here & there. like it was literally the only thing that reliably helped. i wonder if it'd work in your case? ofc i understand this may not be something everyone is willing / able to try, just wanted to put it out there since your situation seems p nightmarish.
in any case, strength
:::
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ReadFanon [any, any] - 1.0yr
I know you're in a very tight spot financially so this advice might not be suitable but what if you get the prescription for whatever birth control and—oh no!—it turns out that the birth control prescribed has intolerable side effects. Wash/rinse/repeat until the bureaucracy is off your back and you are permitted to access the medication that you need.
You might even be able to get the written prescription and just sit on it, never filling it at the pharmacist, but idk to what degree they monitor medication compliance in your country so this might be a gamble.
The other thing would be to see if there's a provision for exemptions - generally speaking when it comes to medical policy there are provisions for this, and often a doctor's written directions on an official letterhead can be more powerful at bending a bureaucracy to your needs than the word of God. You might be able to come to an agreement with your doctor about this which would satisfy them so that they can advocate on your behalf. This is something that is wayyyy outside of my lane but a decent doctor will be able to advocate on the basis of the risks of polypharmacy and of interactions etc. to argue that, essentially, it would be medically negligent of them to prescribe you birth control. If a doctor did that, it's basically playing a trump card - a government department cannot override medical authority in this respect and they cannot force a doctor to violate the principles and code of ethics that they are professionally bound to, so if it escalates to that point then is very rare that a government department will do anything besides tucking their tail between their legs and backing down.
There's also the disability rights angle you could pursue. If you are in dire poverty and the government has now passed legislation that makes you accessing "reasonable and necessary" (ugh) treatment for your disability out of financial reach or if it puts an undue financial burden on you because you are effectively required to pay for an additional monthly prescription, then there's a human rights aspect to this and a disability rights org in your country or your local area, or even just a legal aid service, might be able to kick up a stink on your behalf such that the politicians will allow for exceptions due to financial hardship or they might even have to change it so that it becomes advisory rather than mandatory. There's likely medical associations in your country that are rankling at this government overreach into healthcare which would consider taking up your case so they can put the government back in its place.
Just spitballing some ideas for how to wrangle bureaucracy, from someone who has had to learn how to do it out of necessity.
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DisabledAceSocialist [comrade/them] - 1.0yr
Thanks for the suggestions. Contraceptives are free in the UK, so I can't use the financial angle. However, I will consider getting the prescription and not using it.
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khizuo [ze/zir] - 1.0yr
feeling increasingly more hopeless that i’m ever going to get to be self-sufficient enough to move away from my parents. can’t work a normal job, can’t do a lot of iadls (as well as hygiene related adls, plus ambulating is getting difficult). my family isn’t covid-cautious and living with them for extended periods of time has never gone well for me. me/cfs is stealing my life away.
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Ivysaur - 1.0yr
loling at that masking thread that got removed because it said “funny/sad how people are sick all the time”
“It is never funny that people are sick, low key ableism” and yet half the fucking comments on this website talk about their unmasked travels or concerts or conventions all the goddamn time and try to tell me how it’s actually fine that they’re unmasked all the time because everyone else is so mean about it :(
None of that shit ever gets called out, removed, nothing. Holy shit lol I’m tired, y’all
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dustbunnies [she/her, comrade/them] - 1.0yr
I think of you every time I feel weird in the store because nobody else is wearing one, and I feel less alone.
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Ivysaur - 1.0yr
i am happy to hear it. all my yapping's gotta count for something!
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robot_dog_with_gun [they/them] - 1.0yr
never stopping. certainly not in
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blipblip [they/them] - 1.0yr
I saw that it was veganism+masking and knew it would either start a struggle sesh or get deleted
For all the talk about treats some people can't walk the walk, or I guess in this case even talk the talk lmao
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Ivysaur - 1.0yr
I think it was @AshenWolf@hexbear.net who said it but it really is like there's some unspoken assumption on both of these topics that Everyone Here is Doing the Right Thing...just don't talk about it or ask about it or bring it up at all. Why? Because it's "divisive". But...I thought everyone was on the same page...? It is complete nonsense, and unsurprisingly always serves only egos of the ones who are perpetrating harm, wow go figure!!!
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blipblip [they/them] - 1.0yr
The vibe I've always gotten is there are a good chunk of people that know it's the right thing but just don't for whatever reason, a small chunk that start crying at the suggestion that no they don't actually need cow milk to live/can wear a mask without dropping dead, and then some unknowable but probably small amount of people silently doing the right thing who can't be bothered to bring it up cause it always turns into shit flinging.
At least as far as I can tell the crybabies usually get a mod smackdown at least.
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Wertheimer [any] - 1.0yr
The music thread from a week or two ago was wild. Everybody into the Covid mosh pit or you're a reactionary boomer!
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Anvil_Lavigne [she/her, they/them] - 1.0yr
the music thread was such a clown show that this aspect didn't even register until i saw it spelled out
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khizuo [ze/zir] - 1.0yr
god yeah… the double standard hurts
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Ivysaur - 1.0yr
I don't know if this is a particularly good habit to have but my go-to response to a lot of things that people like to say in response to "doomerism" these days is to ask someone when the last time they thought about COVID/wearing a mask was and watch the wind immediately fall out of their sails. We all know it's still a problem. One of my wife's coworkers recently asked her if she was bothered that she didn't wear a mask. After basically saying yes, she gave many excuses followed by "I know these are all lame excuses" -- and that's really just it, isn't it? You all know what you're doing. I do not fall for the propaganda excuse when workers on the ground are saying stuff like this. Everyone, and I do mean everyone, is just so...fake. Fake, unserious, hegemonic. Dreadful.
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ReadFanon [any, any] - 1.0yr
I'm so tired and I'm tired of being tired all the time.
Edit parte deux: I can't fucking stand talking to the general population about the internal experiences of people with disability. I hate it and I made the mistake of doing it recently and it was maddening - somewhere on social media there's discussion about the ableist tropes in a fairly recently released book. I haven't read it but the story goes that the visually-impaired protagonist who is also a superhero (major supercrip ick vibes!) identifies closely with Batman. Apparently, according to the critic who is themselves disabled, the story goes along and the protagonist only becomes competent after his blindness is cured. Gross.
Anyway, one comment reply is like "Batman? Erm, Daredevil is right there Sweaty". Now I don't know shit about capeshit but I gleaned that Daredevil is blind, so I say "Are blind people only permitted to identify with blind characters?" in a semi-ironic way. Someone else comes in my replies telling me that Daredevil is the right fictional character for the protagonist to identify with because, get this, apparently Daredevil has a superpower that means he effectively isn't blind. Wonderful!
So the people trying to force blind people into the blind people's box and corralling their interests and who they might identify with to blind people-only are also completely ignoring the disabled person who is criticising the trope that the disabled protagonist only becomes competent after their disability is cured and they are saying that, no actually, the right thing is for this protagonist to identify with what is apparently becoming a literary trope of the disabled-but-effectively-not-disabled superhero who is capable because their disability is made non-existent. They are literally ignoring and talking over the top of a disabled person to say who disabled people should identify with and that this whole trope is perfectly suitable and, in fact, it's completely appropriate. Fuck me.
So I lay into them in the replies. I make a well-reasoned case for why, actually, identifying with Batman is much more realistic:
Batman is a normal person, without any special superpowers, and thus he is far more relatable than a person who has magic powers on this basis alone.
Batman is only a superhero because he has an armoury of gadgets and devices that, when used, help him to achieve his goals. One fairly close metaphorical reading of this would be that this is not unlike the experience of many people with disability to rely upon all sorts of accessibility tools in order to get the job done.
On top of all that, Batman is surrounded by people who seemingly have these special, magical abilities that he lacks and it's through his use of accessibility tools that he is able to achieve a rough parity with those around him. One reading of this could easily be that, if Batman lived in a world exclusively populated by superheroes and supervillains, he could be considered disabled (at least in a metaphorical sense) and he literally relies upon accessibility devices to function well in this world where he is disabled. Whether you agree with this reading or not doesn't really matter tbh because if a person with disability made this case to me and said that this is why they strongly identify with Batman, I'd be like "Yep, that makes complete sense to me!"
Anyway, what do I get in the replies?
"No, that's completely unrealistic. Batman is a billionaire which is the only reason why he can get those devices. It's much more realistic for the protagonist to identify with the blind, disabled-but-not-actually-disabled fictional character who has magical powers than it is to identify with a billionaire."
Shutupshutupshutup!!
It's more realistic for a blind person to identify with a person who has magical powers than it is for a blind person to identify with an average person who happens to be rich? Are you kidding me?? What, are there no people with disability who are wealthy? Is it more within the realms of possibility for a blind person to get some magic powers and a miracle cure for their disability than it is for them to get an inheritance or to win the lottery??
Like, just fuck right off and keep going.
Imagine providing a financial breakdown as a justification for why it's wrong and completely unrealistic for a blind person to identify with Batman and why they must identify with a person who, for all intents and purposes, is as realistic as a wizard or a fairy. Even if, if, that logic itself was solid, the fact of the matter is that people who are blind (and people with disability more generally) are ✨diverse✨ and they can view things from all manner of perspectives and they can have just as broad a spectrum of opinions as anyone else does. Put 30 blind people in a room and I'm sure that you're going to get at least one person who loves Batman and another person who loathes him.
The argument that a blind person identifying with Batman is unrealistic is as valid as saying that it's unrealistic for any person to identify with Batman. Get a fucking grip. These people clearly haven't developed past that phase that children reach in preschool where they tell the black kid "You have to be Black Panther because he's the black superhero".
I just hate it. I basically never talk to people about my own internal, personal experience of being multiply-disabled because invariably I get people ignoring what I say and then butting in to share their deep wisdom and insight into my own disability so that I'm faced with the choice between a high-conflict situation of calling them out on their ableist bullshit which, honestly, I don't have the spoons for or I get to play nice, which only makes me a bad disability advocate and it makes everything worse for me and the entire community of people with disability. Ugh. So I just shut up and avoid the situation entirely. I need to practice leaving dead air in the conversation for long enough for it to become awkward before saying "Well, I need to go" or something.
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Ivysaur - 1.0yr
Excellent, thank you for linking that. I have a few more authors I'd like to spotlight in future weeks, too. There is a lot of literature out there for the intrepid (angry & persistent) info junkie.
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ReadFanon [any, any] - 1.0yr
If you give me a heads-up I can see what audiobook offerings are available for the titles and if there are pirated versions of official audiobook narrations I can source them and upload them to TankieTube. Feel free to send me a DM if you don't want to spoil the upcoming posts.
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Ivysaur - 1.0yr
I have been fighting hell and beyond all day setting up a "simple" self-hosted gemini server on openbsd and let me tell you folks these computers? these fuckin computers? they're full of "daemons" all right
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CupcakeOfSpice [she/her, fae/faer] - 1.0yr
I never thought to try self-hosting on openbsd, but that does sound like a secure option. Sounds like it has its share difficulty, though.
::: spoiler pointless bullshit
see, I told you
:::
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Beetle [hy/hym] - 1.0yr
First off I am convinced your selfcrit was genuine and I see nothing wrong with it. I believe that the people who say they aren’t convinced of your genuinity (I didn’t see such comments on the thread you linked but I also didn’t read them all) probably didn’t like your apology because they didn’t agree that what you did was wrong.
Relating to your rsd, I have rsd too so I feel like I understand your thought process here. It seems like you’re desperately trying to get everyone on board with you. Again I absolutely get this urge because I feel it too. But in this particular situation that is not a realistic expectation. You were caught in the crossfires of a divisive topic on this site, and some people that didn’t agree with the reason you were banned see your apology as taking the opposite side as them.
I don’t think it’s fair for people to put that on you, they can disagree with your ban reasoning but still accept that your apology was genuine and that you believe you did something wrong. But I also don’t think it’s reasonable to expect everyone to approach every conflict with a lot of nuance, especially if the conflict brings up a strong emotional response to some of the people involved.
I know it’s not really helpful to tell someone with rsd to ‘stop worrying because there’s nothing you could do to prevent backlash’, because the rejection is still there and thus it will still hurt. But I still wanted to say that I don’t think you broke any social norms here.
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Verenata - 1.0yr
I am so sorry if that post brought all that trauma back up 💀
I had a peak in this thread since I'm audhd too and I saw your comment with "i learnt about hyper empathy" and was like aaaa i did too where did you learn it.... oh wait.... oh no.
I'm so sorry if that thread brought all that crap about selfcrit up again for you. Omg I feel so bad 😭😭😭 I didn't even know you'd made a self crit! I think you are genuine and NOT attention seeking!! I'm sorrrryyyyyyy
7
PurrLure [she/her] - 1.0yr
Work is making us come in 3 days a week starting next year for no practical reason (it's not like we're adding a bunch of in person meetings to our schedules or doing tons of hands-on training) and then getting mad at people for complaining. Many of us weren't even invited to the meeting they announced this, myself included. I had to learn it through office gossip, and I HATE participating in that shit.
So I'm drawing a line in the sand. I've been a "temp" worker for over half a decade and don't want to tell my coworkers I'm autistic in case it either eliminates my chances of being hired as a real employee or worst case scenario they suddenly let me go for something completely unrelated. Not sharing this info means that every time I go to work I'm masking up, and it is FUCKING EXHAUSTING KEEPING THIS SHIT UP FOR YEARS. I requested either full wfh or a compromise where I only need to come in during the mornings. The compromise means corporate still gets their precious little badge swipe data and a check in one of their boxes. I'm not sure if it will actually get approved since while I was lucky enough to be diagnosed as a small child, my parents thought it was something you "got over" and threw out all related paperwork when we moved. No idea if I can actually prove I'm autistic as an adult, and if I can even find a doctor to re-diagnose me, it will probably cost thousands.
Wish me luck in the coming weeks, I need this job for at least another year.
13
Iraglassceiling [she/her] - 1.0yr
Logged back into this account after like a year to post this, I am so goddamn grumpy.
::: spoiler TW: Rant about MAID
I am so goddamn sick of leftists who think that because there are bad actors in the system that disabled people shouldn't have autonomy over their own lives. YES the UK expansion is ghoulish. YES the Canada policies offering MAID over mental health treatment are ghoulish. YES MAID is a human right. Please don't patronize me by telling me that you have my best interests in heart while you're denying me fundamental agency.
I never hear people acknowledge that the US actually does allow for MAID, we just do it in the most inhumane way possible. Not only do we euthanize people that we've deemed incompatible with society within the carceral system, but the medical system uses something called VSED to ""allow"" people choose to die by starvation. Voluntarily Stopping Eating and Drinking can be facilitated and overseen by a physician. VSED is accomplished by starving yourself to death over 1-2 weeks. It is not pretty. It is not dignified. It is not humane. But it is passive, so for some reason that makes it OK.
It’s like the most excruciatingly dumb trolley problem imaginable: one track represents letting the trolley creep along at 2 mph, slowly crushing someone while they suffer immensely, the other track has a lever you can pull to make the trolley speed up and deliver a quick, merciful end. The catch is that pulling the lever requires societal consensus, legal systems, and personal courage — all while the person on the track is already suffering.
There is a whole branch of medicine that has been grappling with the ethics of humane euthanasia for CENTURIES but nobody seems to value the opinion of Veterinarians, so also fuck leftists leave vets out of the conversation and marginalize a whole profession of doctors with first hand insight. As someone who has personally performed hundreds of euthanasias and watched multiple humans die within the healthcare system I can tell you in very explicit detail why MAID is preferable to suffocating in your own plueral fluid -- which is what happens when you "die by natural causes." There is no such thing. There is only agonal breathing, terminal agitation, and suffering.
Unfortunately any type of exercise makes my illness worse. I used to love home exercises because I also feel uncomfortable at a gym. When I got long covid I didn’t exercise for a long time because I could barely get out of bed and hadn’t really learned about pacing yet. This summer I started feeling a bit better because I learned pacing. I thought I could try little exercises because I didn’t feel as horrible as I did before and I just felt really bad that I wasn’t able to exercise for a while and wanted to gain some strength back. This backfired on me completely. I can exercise, and it feels amazing while I do it, but the next day I will crash and my recovery time will be weeks or months depending on the intensity.
I honestly can’t describe how painful that is for me, because I completely relate with your comment about feeling much better physically and mentally even from just a little bit of regular exercise from before I got sick.
I have to limit all of my muscle usage, because my body just can not spend the energy. This scares me, because this means that my muscles will keep getting weaker and there’s nothing I can do about it. My knees are starting to hurt because I don’t have the muscles to support them when walking or standing for too long. My hand is hurting right now from typing this comment lol. ME/CFS is a really scary illness.
12
ReadFanon [any, any] - 1.0yr
Sorry to hear it but I'm glad you know what you need to do and that you're being proactive about it.
ME feels like I'm a cartoon character in a wooden boat and there's 12 holes in it but I've only got 10 fingers and I'm tragi-comically trying to plug each hole but in doing so I leave another hole open as the boat progressively takes on more water.
"You really need to plug that hole or otherwise your boat is going to sink!"
"Okay, so which hole do you think should I uncover so I'm able to plug that hole?"
I hate it and I hate to hear that someone else is struggling with it as well.
13
Beetle [hy/hym] - 1.0yr
That’s a really good analogy, everything is deteriorating but any focus on one aspect will make the others deteriorate even more. ME is a little bit different for everyone but for me I’ve had to accept that my muscles are a lost cause and I’ll have to adjust when they get weaker.
It’s depressing how many people suffer from ME, I’m sorry to hear you have it too.
11
Shinji_Ikari [he/him] - 1.0yr
I only dip my toe(lmao) into what it's like to live with disability. I'm on the tail end of a gout flare-up thats been lasting weeks. If you're unfamiliar, it's like waking up to find someone broke your foot with a sledge hammer while you were asleep except that person is your kidneys.
I've been walking with a cane and dealing with loads of pain while still needing to go to work.
Today was the first time in weeks I was able to get my foot into a boot to ride my motorcycle again. It didn't matter it hurt every up shift. I didn't care it was sub 30f. I'm just so happy to ride again today. I don't care if I regress tomorrow. I got to ride today. I hope this is an appropriate place to post.
Having my mobility taken from me a couple times a year has been extremely eye opening to how hard simple things can be to navigate.
12
DragonBallZinn [he/him, they/them] - 1.0yr
For any neurodiverse people here (particularly AuDHD), does anyone else find traffic completely overwhelming? I find everyday errands so hard to do because the roads are constantly full.
I few errands can take all day because I dread actually driving, and of course drive itself takes hours of constant traffic jams despite the fact I live in the middle of nowhere.
I’d love to live in a walkable city, but it’s so hard to find jobs these days and even if I did there’s no way I can afford to live somewhere with public transportation.
11
DisabledAceSocialist [comrade/them] - 1.0yr
Here is the letter I've written to the doctor:
**Dear Dr R,
I have received a latter stating that as I am a woman of childbearing age taking topiramate, I must be put on birth control unless there is a compelling reason why pregnancy is not possible. I have not been sexually active for 18 years, have no intention of being so again, and I started going through the menopause almost a year ago.
As a stroke patient, hormonal contraceptives put me at higher risk of stroke, and for my own reasons I am not willing to accept any kind of contraceptives. I consider my reasons for not needing contraceptives to be compelling and I would like to continue to receive topiramate.**
The reason I put "for my own reasons" is because I don't want to sound threatening right from the start if I can get it sorted out amicably and also it leaves it open for me to think about what to write later if I need to fight. I was thinking I might have three angles to argue this is discriminatory if it comes to that:
Insisting someone needs to take a drug only because they're female is gender discrimination.
I could bring my asexuality into it.
Although I'm not religious, as a young child I was brought up extremely catholic. They catholic church teaches that contraception is unacceptable. I could pretend I've returned to my childhood religion and argue discrimination on religious grounds.
What do you think?
11
Aradina [They/Them] - 1.0yr
Aaaaaaaaaaaaaaaaaaaa
10
ashinadash [she/her] - 1.0yr
True
5
roux [they/them, xe/xem] - 1.0yr
Guess who got hit with Executive Dysfunction Day and is now beating themself up over not being remotely productive?
10
roux [they/them, xe/xem] - 1.0yr
I am a broken man. Ok maybe a bit clickbaity but at this job we are supposed to work 3 days on, 4 days off but my schedule change ended up with me essentially working Friday through today(Tuesday) and I'm tired, I hurt, my whole body is chapped(my lips started bleeding yesterday am but I now have chapstick).
I fucked up yesterday and ran 2 fucking stop signs and I was in a Amazon branded van which are the ones with the Big Brother hardware and software(cameras and sensors) and they catch everything so I got dinged. The guy said he was gonna let the first one slide since the sign was behind a tree but the second one was all me. My brain didn't brain and I rolled through without doing the 2-3 second count after coming to a complete stop. So I got pulled from my route early.
When I called to report back, I asked if I was fired, and the dispatch guy was confused and was like "I don't think so, why would you get fired?" When I got back to the station I ended up blurting out that I am ASD and basically just get fired from jobs. Funny enough, he said he had an autistic kid and he understands, then(sort of with kid gloves but also kind of sweet and appreciated) showed me my stop signs I got dinged on. We talked a bit more and he said "see you tomorrow, go sleep it off".
Well today my shift got demoted to loader so I work 8:30 to 10:30. I donno if it's protocol or not but whatever. After my shift and some errands, I get to go back to shit posting, reading the Bread Book and working on web stuff. I'm hoping to have a site up and running for a group of anon smut writers(I think I can post about them here and be safe since our social circles don't overlap, but I know them personally and they are active on a pretty popular site).
Anyway I'll be around for the rest of the week.
10
CupcakeOfSpice [she/her, fae/faer] - 1.0yr
Ugh. I got overwhelmed and did none of the chores I was supposed to do today. Now I feel terrible and the stress is making my psychosis break through. Brains are such... interesting creatures.
I'm almost certain I have the book you were discussing, No Bad Parts, in audiobook format and it's sitting on my pile of pending uploads for TankieTube.
If either of you would have a use for it, I can make uploading it a priority.
Also note that there's c/book_requests if you have eBook/audiobooks that you would like help getting your hands on. Of course theory, politics, and history get preference for requests but it almost goes without saying that books on disability and neurodivergence (i.e. all of neurodivergence, including things like PTSD and trauma-related mental illness) are close to my heart so they also get preference, I just didn't mention this in the comm because I figure I have enough notoriety on Hexbear for how important these things are to me. It almost doesn't require mention that audiobooks are super important for accessibility.
Turns out that it might be helpful to another user so I just went ahead and uploaded it here.
9
Wmill [they/them, fae/faer] - 1.0yr
good looking out, I'm lucky enough to have access to a lot of audiobooks through my library but for anyone else who doesn't this is invaluable.
5
dustbunnies [she/her, comrade/them] - 1.0yr
thanks for explaining more about this for me
this part of what you said
Part of me for the longest time has gone not thinking about things and repressing
hey, me too! stuff it down, too much stuff to Do to sit and Think
but I try to make time every night to get in the right head space and check in if that makes sense.
it makes perfect sense. I think I need this too! thank you for talking about it. ❤️
4
Wmill [they/them, fae/faer] - 1.0yr
Np I been slacking on my reading these past days but hope you get a lot out of this book. I'll keep at it in my end and try to give more updates as I find work through more break throughs or just need to air out my thoughts. Honestly glad for this disabled megathread
3
dustbunnies [she/her, comrade/them] - 1.0yr
me too
2
dustbunnies [she/her, comrade/them] - 1.0yr
you are the best!!
3
TheSpectreOfGay [hy/hym, she/her] - 1.0yr
i got diagnosed with ptsd the other day and man, idk if it's just confirmation bias but i sure am noticing it now lmao
9
Verenata - 1.0yr
Saaaaaaammmmmeee like when I was in a high stress time I just didn't notice it (as much) like my body was like "let's just get through the next few months" pure survival mode.
But then once I was in a safer space I've noticed it way more.
Hope you are okay!
5
TheSpectreOfGay [hy/hym, she/her] - 1.0yr
yea im doing okay! just kinda fixated on the thing that gave me ptsd (ex im no longer in contact with) lol
thank you for the kind words :meow-hug:
5
Verenata - 1.0yr
Yeah that happens.
5
blipblip [they/them] - 1.0yr
Being able to do the things is great but taking the do the things pill and then getting to work to find I have fuck all do to sucks so bad, I dunno how it is for other people but time goes so much slower when I'm medicated and having nothing to do but kill time on my phone is agonizing (and I end up sitting hunched over my phone for hours and my neck hurts). I can sit still tho lmao
8
AdmiralDoohickey @lemmygrad.ml - 1.0yr
The company doctor gave me the OK for more remote working days (soon we will have full RTO). The line manager also gave the OK. But his manager in Burgerland didn't because of insane levels of ableist drivel arguments (such as "the same rules apply for everyone" and "the cleaners can't work remotely, we programmers aren't a higher class". When I told him that I perform worse in office, he told me he won't argue because he isn't a productivy researcher, however he wants me to come to office because he thinks my productivity will increase??????
He also interrogated me about my performance and responsibilities (I bet he would fire me if he wasn't satisfied)
The funny thing is that the company has those seminars about burnout and mental health but the burgerlander manager feigned that he didn't know what burnout is when I mentioned it and made me give him a definition.
The even funnier thing is that the doctor asked me to talk to her about accomodations once I disclosed my medical history months before, when I was on probation and my abilities were unproven. If I said yes I would be fired right then.
The only thing I can do now is walk the path that is laid before me, while knowing that every day the inevitable autistic burnout comes closer and closer. I have to do that in ordwr to last one year in the job at least, so that I will have experience to find another one.
I am beyond crushed and seething at everything right now.
8
roux [they/them, xe/xem] - 1.0yr
First day off and I have a phone interview for an IT position that I'm probably qualified for but for a place that I don't want to work for. It would pay well though. I also have therapy and a PSL meeting today so my day is gonna be chopped up and I won't get much done that I wanna get done, which sucks.
Right now I'm trying to mentally transition back to me form work me and it sucks. I need to reach out to the people I'm making this site for so I'm gonna knock that out now I think and then get into the daily grind.
I've been doing the TikTok thing and the self-diagnosis is there. I'm already diagnosed but seeing so much stuff and going "that's just like me" is real. I haven't seen a single person that seems to be supposedly faking being disabled, which is a big battle cry on reddit about autism TikTok.
7
GalaxyBrain [they/them] - 1.0yr
Topic came up in the struggle session that shall not be named but was tangential, but legit question, would you consider being left handed a disability? It's 10% of the world, the life expectancy of left handed people is on average a good bit lower than right handed people mostly due to early deaths from industrial accidents caused by working machinery designed for right handed people, until pretty recently left handed people were forced to change through child abuse (they'd wack my grandmother's left hand whenever she wrote with it at school until she became right handed, she was born in 1943). I cant play wii games that require the nunchuck cause using a pointer or control stick with my right hand doesn't work good for me. Can openers. The struggle session conversation kinda made me wonder if it's right to count myself as disabled and well, it's to a lesser extent but pretty much every aspect of ableism does apply againt left handed people
7
roux [they/them, xe/xem] - 1.0yr
Damn, this is an interesting perspective. From my own experiences in life, my left-handedness never really got in the way and I've adapted a lot of right-handedness either with my left hand(scissors, yuck) or I just use my right hand(computer mouse for example) but it never really slowed me down or anything. I don't think, at least in our current time, that I would consider it a disability but our society is still heavily biased towards right-handedness. In the past like your story about your grandmother, that was straight up child abuse.
I"m curious about what others think about this though.
5
TheSpectreOfGay [hy/hym, she/her] - 1.0yr
i love how anxious my meds that are supposed to stop me from being anxious all the time make me for a few weeks whenever i have to change them
given up on sleeping for today
6
blipblip [they/them] - 1.0yr
Guess who forgot to take their meds this morning :D luckily the hard thing I was supposed to do today blew up through no fault of my own
Made a report on a comment I read wrong (Edie go to bed), and now I'm freaking out and thinking of excuses (rsd?) like, calm down, nothing bad is gonna happen, the mods are just gonna click resolve and thats it. I love (/s) my neuro
Ivysaur in disabled
Disabled Community Megathread December 2nd, 2024 — December 8th, 2024
This week in people of interest: Marta Russell
Marta Russell proposes a theory of disability that rejects arguments about culture and identity, instead charging that specific systems and values embedded within capitalism are the primary driver of (and justification for) legal frameworks sanctioning the institutionalization and economic exclusion of disabled people. A key question for Russell was: What do systems of production and wealth accumulation gain from the way in which disability certification frameworks are constructed and public benefits allocated? Centered in an analysis of means-testing, war spending, administrative burdens, and underfunded social safety net supports, Russell’s work showed how a society obsessed with optimization, efficiency, and cost-benefit analysis had created a vast network of laws and institutions that worked together to perpetuate what she called “the money model of disablement,” better known as “the money model.”
The money model, best articulated in Russell’s 1998 book, Beyond Ramps: Disability at the End of the Social Contract, posits that disabled people are not, as they are often framed in dominant culture, a “burden to society,” but are actually a valuable resource. As Russell explains: “…persons who do not offer a body which will enhance profitmaking as laborers are used to shore up US capitalism by other means.” Disabled people are a nexus around which the capacity for surplus labor power can be built (often financed in part by federal money)—whole sectors of our economy have sprung forth from the money model, which has normalized the commodification of things, systems, and places that maintain disabled bodies in pursuit of squeezing profit from the money which passes through disabled people towards their survival and care. For example, nursing homes, Russell argued, are not places of rest and comfort, but a strategy for commodifying the “least productive” so that they can both be “made of use to the economic order” and free up the labor supply of those who love and wish to care for them. This system benefits neither the workers nor disabled people, only what Russell called the “owning class.” US disability policy, instead of being oriented around supporting the needs of disabled people, sanctions and facilitates the capitalist capture of nearly all aspects of disablement, impairment, chronic illness, and disability, including the way that “reasonable accommodations” are commodified (as explored by Ruth Colker in her essay for this symposium).
Russell was not just a theorist but also was a long-time disability rights activist. Throughout the 1980s, 1990s, and 2000s she was involved in disability advocacy and organizing with ADAPT, Not Dead Yet, and the ACLU. Her efforts focused on policy interventions like assisted suicide laws and SSDI cuts, campaigns that challenged the many stigmatizing portrayals of disabled people sold to the public via the charity industrial complex, and more formal organizing and direct action with ADAPT agitating for home and community-based services as alternatives to nursing homes and other institutions of warehousing. As Nate Holdren argues in his piece for this symposium, Russell’s significant contributions to both disability theory and Marxism were crucially informed by her work in social movements. This connection between theory and praxis is reflected not just in the subject matter of her work, or in her citational practices, but also in the empathy, clarity, and rage with which she argues for the need for the left to begin to engage in a broad refusal of the economic valuation of life.
Russell’s political writing was extensive, covering the topics she organized around as well as more explicit political economic analysis of US policy and critique of the disabling effects of the then-expanding criminal justice system. Russell’s work was also highly critical of the liberal disability rights movement, arguing that disability rights discourse would benefit from embracing leftist thought and political economic analysis. Russell’s approach rejected the court-oriented civil rights strategy that was widely celebrated by liberal disability organizations and activists in the post-ADA era. This strategy, she argued, only sought to tamp down the violence caused by the ways that the state interacted with disabled people; instead, she focused on the political economic, not merely the “cultural” forces, driving systemic oppression of disabled people—an approach on which Jules Gill-Peterson expands in her essay for this symposium.
The lack of exposure that Russell’s small yet incredibly powerful body of work has had cannot be overstated. Her books are hard to find, there is one major printed collection of her essays, and one important book of essays about or incorporating her work. Until Capitalism and Disability: Selected Writings by Marta Russell was published by Haymarket Books in 2019, no comprehensive volume of her collected writings existed, nor was there broad citation of them within disability studies or law. Three years prior, when legal scholar and her former collaborator Ravi Malhotra edited Disability Politics in a Global Economy, an important anthology dedicated to Marta Russell’s memory, it was one of the first times Russell’s work was broadly celebrated within a purely academic context.
— from The Law and Political Economy Project.
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:
Mask up, love one another, and stay alive for one more week.
For those of you looking for the new thread until it gets site pinned https://hexbear.net/post/4074979?scrollToComments=false
I can't believe the letter I've just had from my doctor's surgery, I am furious. I have suffered from severe migraines for years, and have had one stroke already. (people who get migraines are 3x more likely than the general population to have a stroke.) I'm at risk of another stroke. I've been prescribed a drug called topiramate for a while now, to reduce the frequency and severity of the migraines.
I've just received a letter from the doctor's surgery saying that, due to new guidance, as topiramate can cause birth defects, all women of childbearing age who take it MUST be put on birth control, regardless of whether they are sexually active. Which, as I'm sure you can tell from my username, I am not. I don't want to be pressured and bullied into taking contraceptives. Hormonal contraceptives have a lot of side effects, including increased risk of stroke. Apparently the wellbeing of a foetus who will never be conceived is more important than the wellbeing of a woman who actually exists! Even non-hormonal contraception is something I don't want, most of it involves embarrassing and painful procedures that I do not want to be subjected to. And quite frankly, it's the principle of the thing.
So I am going to have to stop taking this migraine med, which will be awful for me, because all the other migraine meds either don't work for me, or are unsuitable for stroke patients. I've even had nerve-blocking injections in my head from the neurologist which only worked for a couple of weeks, then my migraines came back with a vengeance. But no, a hypothetical foetus matters more. Is this not blatant sexual discrimination? I am so angry.
EDIT: You know what is extra infuriating? The letter didn't even offer the option to choose to come off the topiramate, or keep it and take the contraception. The letter just demanded that I go on contraception immediately. No "if you'd like to keep taking the topiramate please make an appointment to get contraception," just a very rude and authoritative demand that I make an appointment to be put on contraception immediately.
EDIT2: I've just read the letter more thoroughly. It says the problem with topiramate is that the babies of women who take it while pregnant are at a higher risk of ADHD and autism. Just think about what they're saying. They're saying ADHD and autistic people are so unwanted by society that it's better to force women to go without medication they need, or force them to take meds they don't want and that could have detrimental side effects for them, than let more autistic/ADHD people come into this world.
That is awful. Apparently this is a newish guideline.
So if there's a way to still prescribe it when someone's pregnant, there must be a way to get around this if you're never going to become pregnant. Unfortunately it sounds like your doctors don't believe in listening to you.
And to add another insult Topamax actually makes birth control less effective.
It can take a long time to stop taking topiramate, too. I was lucky enough to have had no trouble quitting cold turkey, so it is possible, but I've heard stories where it's taken people months to taper without causing problems.
Do your migraines come with aura?
I've just read that link. Mothers who take topiramate may give birth to babies with a 2 or 3 times higher chance or ADHD or autism. Not only are they going to make my life a misery with this, it sounds like eugenics. Can't let anyone give birth to a baby that society doesn't consider perfect! This is some nazi shit.
Yes, they come with all sorts of visual disturbances, from geometric patterns, to looking like I'm looking through a broken mirror, to blind spots, to total blindness.
You said "people who get migraines are 3x more likely than the general population to have a stroke" - and if I remember correctly the likelihood is significantly higher for migraines with aura than those without. Goddamn.
Sexual activity is a migraine trigger for many people. If the doctors refuse to understand what asexuality is, maybe instead they'll believe you if you tell them that sex is a known migraine trigger and you already refrain from that so as not to have another stroke.
I'm sorry, I'm grasping at straws. I don't know how these people think, so I don't know how to persuade them ... I'm just trying to think of what I'd say to my doctor if they were attempting to force me into unwanted medication. I did have a somewhat similar (but not comparable, what you're going through is something else) experience with a neurologist a while back. They refused to refill my rescue medication (which helped) if I stopped taking their preferred preventative medication (which made things worse, and also made me want to die). I had to go without, and find a new doctor. I don't know what I would have done if I were in a more risky situation. It's horrible, when they start holding you hostage like this. I hope they let you appeal.
Thanks so much for the support. I think I need to try and write a letter explaining my position. Maybe someone here could give me some tips for writing it?
It's so infuriating as well because I haven't had sex since 2006. The only reason I even did it before that is because I had never heard of asexuality. I couldn't understand why all my friends were so sexually active but I had no interest. I thought there was something wrong with me, I only tried it to see if that would get me into it. It did not. Quite the opposite in fact. I haven't had any type of sexual contact in 18 years now, and never want to again. On top of this, I think I started going through the menopause this year. My previous regular, heavy painful periods have become light, painless and erratic. I don't even want to tell the doctor I think I'm going through the menopause in case they try to force me to have more medical tests, go on HRT or whatever. It's not bothering me and I'm happy to let nature take it's course. Basically there is no chance in hell of me getting pregnant unless god decides I'm to birth the next messiah, an immaculate conception happens, and if that happens, I'll have an abortion.
This fight against the doctor is just the last thing I need, I already have far more on than I can cope with.
this might be the key to make them not try to get you to take contraceptives – peri- and post-menopausal estrogen is dangerous for people who get migraines with aura, because it greatly increases the stroke risk.
I did a bunch of research on this a few months ago – if it would help you to have links to the studies I found, please let me know ❤️
yes, thank you.
sorry for the delay – I coulfn't find the list I made, so I searched again 🤦
this PubMed article is the most comprehensive thing I found:
Hormonal Contraceptive Options for Women With Headache: A Review of the Evidence
most relevant section:
sadly, in a section about progesterone:
and this other article (that I didn't come across in my previous search) asserts that
so it might not be as dangerous as I thought. ReadFanon's suggestions about saying the side effects are intolerable might be a better route 😞 sorry to let you down.
Can you fight this? You def shouldn't be forced to take a med against your will.
If worse comes to worse, and you get BC pills, just don't take them maybe? My partner gets free BC and she ended up stockpiling them because she doesn't take them. Why she keeps going back and getting her next re-up after it's filled instead of cancelling, idk. But case in point, just toss them or flush them or maybe find someone that needs them.
As far as fighting it, no. I don't have the strength. I am already fighting a benefit appeal, struggling to get enough to eat while having cancer treatment and recovering from a stroke. I have reached my limit, I can't fight anything else.
The problem with pretending to take BC pills is that I'd probably have to have extra monitoring. Since I'm a stroke and cancer patient I already have to have a lot of regular health checks, if I was put on a med that increases stroke risk they'd probably barrage me with even more check ups and blood tests, maybe even see via blood tests that I'm not taking them, idk. But thanks for the suggestion, I will consider it maybe if there's no other way.
::: spoiler drugs
psilocybin can be used to make even cluster headaches manageable, i don't have any hard data on this at hand, but my ex suffered from it & apparently it's p common for folks to be recommending it in their intended social / support groups, so naturally she wanted me to hook her up. just a modest dose was enough to keep it at bay for a couple weeks, after which she'd microdose here & there. like it was literally the only thing that reliably helped. i wonder if it'd work in your case? ofc i understand this may not be something everyone is willing / able to try, just wanted to put it out there since your situation seems p nightmarish.
in any case, strength
:::
I know you're in a very tight spot financially so this advice might not be suitable but what if you get the prescription for whatever birth control and—oh no!—it turns out that the birth control prescribed has intolerable side effects. Wash/rinse/repeat until the bureaucracy is off your back and you are permitted to access the medication that you need.
You might even be able to get the written prescription and just sit on it, never filling it at the pharmacist, but idk to what degree they monitor medication compliance in your country so this might be a gamble.
The other thing would be to see if there's a provision for exemptions - generally speaking when it comes to medical policy there are provisions for this, and often a doctor's written directions on an official letterhead can be more powerful at bending a bureaucracy to your needs than the word of God. You might be able to come to an agreement with your doctor about this which would satisfy them so that they can advocate on your behalf. This is something that is wayyyy outside of my lane but a decent doctor will be able to advocate on the basis of the risks of polypharmacy and of interactions etc. to argue that, essentially, it would be medically negligent of them to prescribe you birth control. If a doctor did that, it's basically playing a trump card - a government department cannot override medical authority in this respect and they cannot force a doctor to violate the principles and code of ethics that they are professionally bound to, so if it escalates to that point then is very rare that a government department will do anything besides tucking their tail between their legs and backing down.
There's also the disability rights angle you could pursue. If you are in dire poverty and the government has now passed legislation that makes you accessing "reasonable and necessary" (ugh) treatment for your disability out of financial reach or if it puts an undue financial burden on you because you are effectively required to pay for an additional monthly prescription, then there's a human rights aspect to this and a disability rights org in your country or your local area, or even just a legal aid service, might be able to kick up a stink on your behalf such that the politicians will allow for exceptions due to financial hardship or they might even have to change it so that it becomes advisory rather than mandatory. There's likely medical associations in your country that are rankling at this government overreach into healthcare which would consider taking up your case so they can put the government back in its place.
Just spitballing some ideas for how to wrangle bureaucracy, from someone who has had to learn how to do it out of necessity.
Thanks for the suggestions. Contraceptives are free in the UK, so I can't use the financial angle. However, I will consider getting the prescription and not using it.
feeling increasingly more hopeless that i’m ever going to get to be self-sufficient enough to move away from my parents. can’t work a normal job, can’t do a lot of iadls (as well as hygiene related adls, plus ambulating is getting difficult). my family isn’t covid-cautious and living with them for extended periods of time has never gone well for me. me/cfs is stealing my life away.
loling at that masking thread that got removed because it said “funny/sad how people are sick all the time”
“It is never funny that people are sick, low key ableism” and yet half the fucking comments on this website talk about their unmasked travels or concerts or conventions all the goddamn time and try to tell me how it’s actually fine that they’re unmasked all the time because everyone else is so mean about it :(
None of that shit ever gets called out, removed, nothing. Holy shit lol I’m tired, y’all
I think of you every time I feel weird in the store because nobody else is wearing one, and I feel less alone.
never stopping. certainly not in
I saw that it was veganism+masking and knew it would either start a struggle sesh or get deleted
For all the talk about treats some people can't walk the walk, or I guess in this case even talk the talk lmao
I think it was @AshenWolf@hexbear.net who said it but it really is like there's some unspoken assumption on both of these topics that Everyone Here is Doing the Right Thing...just don't talk about it or ask about it or bring it up at all. Why? Because it's "divisive". But...I thought everyone was on the same page...? It is complete nonsense, and unsurprisingly always serves only egos of the ones who are perpetrating harm, wow go figure!!!
The vibe I've always gotten is there are a good chunk of people that know it's the right thing but just don't for whatever reason, a small chunk that start crying at the suggestion that no they don't actually need cow milk to live/can wear a mask without dropping dead, and then some unknowable but probably small amount of people silently doing the right thing who can't be bothered to bring it up cause it always turns into shit flinging.
At least as far as I can tell the crybabies usually get a mod smackdown at least.
The music thread from a week or two ago was wild. Everybody into the Covid mosh pit or you're a reactionary boomer!
the music thread was such a clown show that this aspect didn't even register until i saw it spelled out
god yeah… the double standard hurts
I don't know if this is a particularly good habit to have but my go-to response to a lot of things that people like to say in response to "doomerism" these days is to ask someone when the last time they thought about COVID/wearing a mask was and watch the wind immediately fall out of their sails. We all know it's still a problem. One of my wife's coworkers recently asked her if she was bothered that she didn't wear a mask. After basically saying yes, she gave many excuses followed by "I know these are all lame excuses" -- and that's really just it, isn't it? You all know what you're doing. I do not fall for the propaganda excuse when workers on the ground are saying stuff like this. Everyone, and I do mean everyone, is just so...fake. Fake, unserious, hegemonic. Dreadful.
I'm so tired and I'm tired of being tired all the time.
GOOD mega post btw
Edit: Adrestia's Revolt has an amateur audiobook narration of Capitalism and Disability by Marta Russell
Edit parte deux: I can't fucking stand talking to the general population about the internal experiences of people with disability. I hate it and I made the mistake of doing it recently and it was maddening - somewhere on social media there's discussion about the ableist tropes in a fairly recently released book. I haven't read it but the story goes that the visually-impaired protagonist who is also a superhero (major supercrip ick vibes!) identifies closely with Batman. Apparently, according to the critic who is themselves disabled, the story goes along and the protagonist only becomes competent after his blindness is cured. Gross.
Anyway, one comment reply is like "Batman? Erm, Daredevil is right there Sweaty". Now I don't know shit about capeshit but I gleaned that Daredevil is blind, so I say "Are blind people only permitted to identify with blind characters?" in a semi-ironic way. Someone else comes in my replies telling me that Daredevil is the right fictional character for the protagonist to identify with because, get this, apparently Daredevil has a superpower that means he effectively isn't blind. Wonderful!
So the people trying to force blind people into the blind people's box and corralling their interests and who they might identify with to blind people-only are also completely ignoring the disabled person who is criticising the trope that the disabled protagonist only becomes competent after their disability is cured and they are saying that, no actually, the right thing is for this protagonist to identify with what is apparently becoming a literary trope of the disabled-but-effectively-not-disabled superhero who is capable because their disability is made non-existent. They are literally ignoring and talking over the top of a disabled person to say who disabled people should identify with and that this whole trope is perfectly suitable and, in fact, it's completely appropriate. Fuck me.
So I lay into them in the replies. I make a well-reasoned case for why, actually, identifying with Batman is much more realistic:
Batman is a normal person, without any special superpowers, and thus he is far more relatable than a person who has magic powers on this basis alone.
Batman is only a superhero because he has an armoury of gadgets and devices that, when used, help him to achieve his goals. One fairly close metaphorical reading of this would be that this is not unlike the experience of many people with disability to rely upon all sorts of accessibility tools in order to get the job done.
On top of all that, Batman is surrounded by people who seemingly have these special, magical abilities that he lacks and it's through his use of accessibility tools that he is able to achieve a rough parity with those around him. One reading of this could easily be that, if Batman lived in a world exclusively populated by superheroes and supervillains, he could be considered disabled (at least in a metaphorical sense) and he literally relies upon accessibility devices to function well in this world where he is disabled. Whether you agree with this reading or not doesn't really matter tbh because if a person with disability made this case to me and said that this is why they strongly identify with Batman, I'd be like "Yep, that makes complete sense to me!"
Anyway, what do I get in the replies?
"No, that's completely unrealistic. Batman is a billionaire which is the only reason why he can get those devices. It's much more realistic for the protagonist to identify with the blind, disabled-but-not-actually-disabled fictional character who has magical powers than it is to identify with a billionaire."
Shutupshutupshutup!!
It's more realistic for a blind person to identify with a person who has magical powers than it is for a blind person to identify with an average person who happens to be rich? Are you kidding me?? What, are there no people with disability who are wealthy? Is it more within the realms of possibility for a blind person to get some magic powers and a miracle cure for their disability than it is for them to get an inheritance or to win the lottery??
Like, just fuck right off and keep going.
Imagine providing a financial breakdown as a justification for why it's wrong and completely unrealistic for a blind person to identify with Batman and why they must identify with a person who, for all intents and purposes, is as realistic as a wizard or a fairy. Even if, if, that logic itself was solid, the fact of the matter is that people who are blind (and people with disability more generally) are ✨diverse✨ and they can view things from all manner of perspectives and they can have just as broad a spectrum of opinions as anyone else does. Put 30 blind people in a room and I'm sure that you're going to get at least one person who loves Batman and another person who loathes him.
The argument that a blind person identifying with Batman is unrealistic is as valid as saying that it's unrealistic for any person to identify with Batman. Get a fucking grip. These people clearly haven't developed past that phase that children reach in preschool where they tell the black kid "You have to be Black Panther because he's the black superhero".
I just hate it. I basically never talk to people about my own internal, personal experience of being multiply-disabled because invariably I get people ignoring what I say and then butting in to share their deep wisdom and insight into my own disability so that I'm faced with the choice between a high-conflict situation of calling them out on their ableist bullshit which, honestly, I don't have the spoons for or I get to play nice, which only makes me a bad disability advocate and it makes everything worse for me and the entire community of people with disability. Ugh. So I just shut up and avoid the situation entirely. I need to practice leaving dead air in the conversation for long enough for it to become awkward before saying "Well, I need to go" or something.
Excellent, thank you for linking that. I have a few more authors I'd like to spotlight in future weeks, too. There is a lot of literature out there for the intrepid (angry & persistent) info junkie.
If you give me a heads-up I can see what audiobook offerings are available for the titles and if there are pirated versions of official audiobook narrations I can source them and upload them to TankieTube. Feel free to send me a DM if you don't want to spoil the upcoming posts.
I have been fighting hell and beyond all day setting up a "simple" self-hosted gemini server on openbsd and let me tell you folks these computers? these fuckin computers? they're full of "daemons" all right
I never thought to try self-hosting on openbsd, but that does sound like a secure option. Sounds like it has its share difficulty, though.
today, in things I learned by lurking:
hyper-empathy exists, and apparently it is not the standard experience to literally feel for other people
::: spoiler pointless bullshit see, I told you :::
First off I am convinced your selfcrit was genuine and I see nothing wrong with it. I believe that the people who say they aren’t convinced of your genuinity (I didn’t see such comments on the thread you linked but I also didn’t read them all) probably didn’t like your apology because they didn’t agree that what you did was wrong.
Relating to your rsd, I have rsd too so I feel like I understand your thought process here. It seems like you’re desperately trying to get everyone on board with you. Again I absolutely get this urge because I feel it too. But in this particular situation that is not a realistic expectation. You were caught in the crossfires of a divisive topic on this site, and some people that didn’t agree with the reason you were banned see your apology as taking the opposite side as them.
I don’t think it’s fair for people to put that on you, they can disagree with your ban reasoning but still accept that your apology was genuine and that you believe you did something wrong. But I also don’t think it’s reasonable to expect everyone to approach every conflict with a lot of nuance, especially if the conflict brings up a strong emotional response to some of the people involved.
I know it’s not really helpful to tell someone with rsd to ‘stop worrying because there’s nothing you could do to prevent backlash’, because the rejection is still there and thus it will still hurt. But I still wanted to say that I don’t think you broke any social norms here.
I am so sorry if that post brought all that trauma back up 💀
I had a peak in this thread since I'm audhd too and I saw your comment with "i learnt about hyper empathy" and was like aaaa i did too where did you learn it.... oh wait.... oh no.
I'm so sorry if that thread brought all that crap about selfcrit up again for you. Omg I feel so bad 😭😭😭 I didn't even know you'd made a self crit! I think you are genuine and NOT attention seeking!! I'm sorrrryyyyyyy
Work is making us come in 3 days a week starting next year for no practical reason (it's not like we're adding a bunch of in person meetings to our schedules or doing tons of hands-on training) and then getting mad at people for complaining. Many of us weren't even invited to the meeting they announced this, myself included. I had to learn it through office gossip, and I HATE participating in that shit.
So I'm drawing a line in the sand. I've been a "temp" worker for over half a decade and don't want to tell my coworkers I'm autistic in case it either eliminates my chances of being hired as a real employee or worst case scenario they suddenly let me go for something completely unrelated. Not sharing this info means that every time I go to work I'm masking up, and it is FUCKING EXHAUSTING KEEPING THIS SHIT UP FOR YEARS. I requested either full wfh or a compromise where I only need to come in during the mornings. The compromise means corporate still gets their precious little badge swipe data and a check in one of their boxes. I'm not sure if it will actually get approved since while I was lucky enough to be diagnosed as a small child, my parents thought it was something you "got over" and threw out all related paperwork when we moved. No idea if I can actually prove I'm autistic as an adult, and if I can even find a doctor to re-diagnose me, it will probably cost thousands.
Wish me luck in the coming weeks, I need this job for at least another year.
Logged back into this account after like a year to post this, I am so goddamn grumpy.
::: spoiler TW: Rant about MAID
I am so goddamn sick of leftists who think that because there are bad actors in the system that disabled people shouldn't have autonomy over their own lives. YES the UK expansion is ghoulish. YES the Canada policies offering MAID over mental health treatment are ghoulish. YES MAID is a human right. Please don't patronize me by telling me that you have my best interests in heart while you're denying me fundamental agency.
I never hear people acknowledge that the US actually does allow for MAID, we just do it in the most inhumane way possible. Not only do we euthanize people that we've deemed incompatible with society within the carceral system, but the medical system uses something called VSED to ""allow"" people choose to die by starvation. Voluntarily Stopping Eating and Drinking can be facilitated and overseen by a physician. VSED is accomplished by starving yourself to death over 1-2 weeks. It is not pretty. It is not dignified. It is not humane. But it is passive, so for some reason that makes it OK.
It’s like the most excruciatingly dumb trolley problem imaginable: one track represents letting the trolley creep along at 2 mph, slowly crushing someone while they suffer immensely, the other track has a lever you can pull to make the trolley speed up and deliver a quick, merciful end. The catch is that pulling the lever requires societal consensus, legal systems, and personal courage — all while the person on the track is already suffering.
There is a whole branch of medicine that has been grappling with the ethics of humane euthanasia for CENTURIES but nobody seems to value the opinion of Veterinarians, so also fuck leftists leave vets out of the conversation and marginalize a whole profession of doctors with first hand insight. As someone who has personally performed hundreds of euthanasias and watched multiple humans die within the healthcare system I can tell you in very explicit detail why MAID is preferable to suffocating in your own plueral fluid -- which is what happens when you "die by natural causes." There is no such thing. There is only agonal breathing, terminal agitation, and suffering.
:::
@ReadFanon@hexbear.net reply to your comment on previous thread:
Unfortunately any type of exercise makes my illness worse. I used to love home exercises because I also feel uncomfortable at a gym. When I got long covid I didn’t exercise for a long time because I could barely get out of bed and hadn’t really learned about pacing yet. This summer I started feeling a bit better because I learned pacing. I thought I could try little exercises because I didn’t feel as horrible as I did before and I just felt really bad that I wasn’t able to exercise for a while and wanted to gain some strength back. This backfired on me completely. I can exercise, and it feels amazing while I do it, but the next day I will crash and my recovery time will be weeks or months depending on the intensity.
I honestly can’t describe how painful that is for me, because I completely relate with your comment about feeling much better physically and mentally even from just a little bit of regular exercise from before I got sick.
I have to limit all of my muscle usage, because my body just can not spend the energy. This scares me, because this means that my muscles will keep getting weaker and there’s nothing I can do about it. My knees are starting to hurt because I don’t have the muscles to support them when walking or standing for too long. My hand is hurting right now from typing this comment lol. ME/CFS is a really scary illness.
Sorry to hear it but I'm glad you know what you need to do and that you're being proactive about it.
ME feels like I'm a cartoon character in a wooden boat and there's 12 holes in it but I've only got 10 fingers and I'm tragi-comically trying to plug each hole but in doing so I leave another hole open as the boat progressively takes on more water.
"You really need to plug that hole or otherwise your boat is going to sink!"
"Okay, so which hole do you think should I uncover so I'm able to plug that hole?"
I hate it and I hate to hear that someone else is struggling with it as well.
That’s a really good analogy, everything is deteriorating but any focus on one aspect will make the others deteriorate even more. ME is a little bit different for everyone but for me I’ve had to accept that my muscles are a lost cause and I’ll have to adjust when they get weaker.
It’s depressing how many people suffer from ME, I’m sorry to hear you have it too.
I only dip my toe(lmao) into what it's like to live with disability. I'm on the tail end of a gout flare-up thats been lasting weeks. If you're unfamiliar, it's like waking up to find someone broke your foot with a sledge hammer while you were asleep except that person is your kidneys.
I've been walking with a cane and dealing with loads of pain while still needing to go to work.
Today was the first time in weeks I was able to get my foot into a boot to ride my motorcycle again. It didn't matter it hurt every up shift. I didn't care it was sub 30f. I'm just so happy to ride again today. I don't care if I regress tomorrow. I got to ride today. I hope this is an appropriate place to post.
Having my mobility taken from me a couple times a year has been extremely eye opening to how hard simple things can be to navigate.
For any neurodiverse people here (particularly AuDHD), does anyone else find traffic completely overwhelming? I find everyday errands so hard to do because the roads are constantly full.
I few errands can take all day because I dread actually driving, and of course drive itself takes hours of constant traffic jams despite the fact I live in the middle of nowhere.
I’d love to live in a walkable city, but it’s so hard to find jobs these days and even if I did there’s no way I can afford to live somewhere with public transportation.
Here is the letter I've written to the doctor:
**Dear Dr R,
I have received a latter stating that as I am a woman of childbearing age taking topiramate, I must be put on birth control unless there is a compelling reason why pregnancy is not possible. I have not been sexually active for 18 years, have no intention of being so again, and I started going through the menopause almost a year ago.
As a stroke patient, hormonal contraceptives put me at higher risk of stroke, and for my own reasons I am not willing to accept any kind of contraceptives. I consider my reasons for not needing contraceptives to be compelling and I would like to continue to receive topiramate.**
The reason I put "for my own reasons" is because I don't want to sound threatening right from the start if I can get it sorted out amicably and also it leaves it open for me to think about what to write later if I need to fight. I was thinking I might have three angles to argue this is discriminatory if it comes to that:
What do you think?
Aaaaaaaaaaaaaaaaaaaa
True
Guess who got hit with Executive Dysfunction Day and is now beating themself up over not being remotely productive?
I am a broken man. Ok maybe a bit clickbaity but at this job we are supposed to work 3 days on, 4 days off but my schedule change ended up with me essentially working Friday through today(Tuesday) and I'm tired, I hurt, my whole body is chapped(my lips started bleeding yesterday am but I now have chapstick).
I fucked up yesterday and ran 2 fucking stop signs and I was in a Amazon branded van which are the ones with the Big Brother hardware and software(cameras and sensors) and they catch everything so I got dinged. The guy said he was gonna let the first one slide since the sign was behind a tree but the second one was all me. My brain didn't brain and I rolled through without doing the 2-3 second count after coming to a complete stop. So I got pulled from my route early.
When I called to report back, I asked if I was fired, and the dispatch guy was confused and was like "I don't think so, why would you get fired?" When I got back to the station I ended up blurting out that I am ASD and basically just get fired from jobs. Funny enough, he said he had an autistic kid and he understands, then(sort of with kid gloves but also kind of sweet and appreciated) showed me my stop signs I got dinged on. We talked a bit more and he said "see you tomorrow, go sleep it off".
Well today my shift got demoted to loader so I work 8:30 to 10:30. I donno if it's protocol or not but whatever. After my shift and some errands, I get to go back to shit posting, reading the Bread Book and working on web stuff. I'm hoping to have a site up and running for a group of anon smut writers(I think I can post about them here and be safe since our social circles don't overlap, but I know them personally and they are active on a pretty popular site).
Anyway I'll be around for the rest of the week.
Ugh. I got overwhelmed and did none of the chores I was supposed to do today. Now I feel terrible and the stress is making my psychosis break through. Brains are such... interesting creatures.
@dustbunnies@hexbear.net @Wmill@hexbear.net
I'm almost certain I have the book you were discussing, No Bad Parts, in audiobook format and it's sitting on my pile of pending uploads for TankieTube.If either of you would have a use for it, I can make uploading it a priority.Also note that there's c/book_requests if you have eBook/audiobooks that you would like help getting your hands on. Of course theory, politics, and history get preference for requests but it almost goes without saying that books on disability and neurodivergence (i.e. all of neurodivergence, including things like PTSD and trauma-related mental illness) are close to my heart so they also get preference, I just didn't mention this in the comm because I figure I have enough notoriety on Hexbear for how important these things are to me. It almost doesn't require mention that audiobooks are super important for accessibility.Turns out that it might be helpful to another user so I just went ahead and uploaded it here.
thanks for explaining more about this for me
this part of what you said
hey, me too! stuff it down, too much stuff to Do to sit and Think
it makes perfect sense. I think I need this too! thank you for talking about it. ❤️
Np I been slacking on my reading these past days but hope you get a lot out of this book. I'll keep at it in my end and try to give more updates as I find work through more break throughs or just need to air out my thoughts. Honestly glad for this disabled megathread
me too
i got diagnosed with ptsd the other day and man, idk if it's just confirmation bias but i sure am noticing it now lmao
Saaaaaaammmmmeee like when I was in a high stress time I just didn't notice it (as much) like my body was like "let's just get through the next few months" pure survival mode.
But then once I was in a safer space I've noticed it way more.
Hope you are okay!
yea im doing okay! just kinda fixated on the thing that gave me ptsd (ex im no longer in contact with) lol
thank you for the kind words :meow-hug:
Yeah that happens.
Being able to do the things is great but taking the do the things pill and then getting to work to find I have fuck all do to sucks so bad, I dunno how it is for other people but time goes so much slower when I'm medicated and having nothing to do but kill time on my phone is agonizing (and I end up sitting hunched over my phone for hours and my neck hurts). I can sit still tho lmao
The company doctor gave me the OK for more remote working days (soon we will have full RTO). The line manager also gave the OK. But his manager in Burgerland didn't because of insane levels of ableist drivel arguments (such as "the same rules apply for everyone" and "the cleaners can't work remotely, we programmers aren't a higher class". When I told him that I perform worse in office, he told me he won't argue because he isn't a productivy researcher, however he wants me to come to office because he thinks my productivity will increase??????
He also interrogated me about my performance and responsibilities (I bet he would fire me if he wasn't satisfied)
The funny thing is that the company has those seminars about burnout and mental health but the burgerlander manager feigned that he didn't know what burnout is when I mentioned it and made me give him a definition.
The even funnier thing is that the doctor asked me to talk to her about accomodations once I disclosed my medical history months before, when I was on probation and my abilities were unproven. If I said yes I would be fired right then.
The only thing I can do now is walk the path that is laid before me, while knowing that every day the inevitable autistic burnout comes closer and closer. I have to do that in ordwr to last one year in the job at least, so that I will have experience to find another one.
I am beyond crushed and seething at everything right now.
First day off and I have a phone interview for an IT position that I'm probably qualified for but for a place that I don't want to work for. It would pay well though. I also have therapy and a PSL meeting today so my day is gonna be chopped up and I won't get much done that I wanna get done, which sucks.
Right now I'm trying to mentally transition back to me form work me and it sucks. I need to reach out to the people I'm making this site for so I'm gonna knock that out now I think and then get into the daily grind.
I've been doing the TikTok thing and the self-diagnosis is there. I'm already diagnosed but seeing so much stuff and going "that's just like me" is real. I haven't seen a single person that seems to be supposedly faking being disabled, which is a big battle cry on reddit about autism TikTok.
Topic came up in the struggle session that shall not be named but was tangential, but legit question, would you consider being left handed a disability? It's 10% of the world, the life expectancy of left handed people is on average a good bit lower than right handed people mostly due to early deaths from industrial accidents caused by working machinery designed for right handed people, until pretty recently left handed people were forced to change through child abuse (they'd wack my grandmother's left hand whenever she wrote with it at school until she became right handed, she was born in 1943). I cant play wii games that require the nunchuck cause using a pointer or control stick with my right hand doesn't work good for me. Can openers. The struggle session conversation kinda made me wonder if it's right to count myself as disabled and well, it's to a lesser extent but pretty much every aspect of ableism does apply againt left handed people
Damn, this is an interesting perspective. From my own experiences in life, my left-handedness never really got in the way and I've adapted a lot of right-handedness either with my left hand(scissors, yuck) or I just use my right hand(computer mouse for example) but it never really slowed me down or anything. I don't think, at least in our current time, that I would consider it a disability but our society is still heavily biased towards right-handedness. In the past like your story about your grandmother, that was straight up child abuse.
I"m curious about what others think about this though.
i love how anxious my meds that are supposed to stop me from being anxious all the time make me for a few weeks whenever i have to change them
given up on sleeping for today
Guess who forgot to take their meds this morning :D luckily the hard thing I was supposed to do today blew up through no fault of my own
Made a report on a comment I read wrong (Edie go to bed), and now I'm freaking out and thinking of excuses (rsd?) like, calm down, nothing bad is gonna happen, the mods are just gonna click resolve and thats it. I love (/s) my neuro