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.
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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.
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Logged back into this account after like a year to post this, I am so goddamn grumpy.
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.
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.
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
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.
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.
That is awful. Apparently this is a newish guideline.
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?
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.
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 ❤️
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.
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
all the supplies have arrived and i just glue basted my first two hexies!! my plan is to practice by making a few tree ornaments for the holidays
i'm worried i may have glued the fabric too tight to the paper but i'm just gonna go for it! well the second i'm actually able to successfully thread the needle lol, it's a bit of a struggle
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.
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.
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
Based OpenBSD user :3 Just like me frfr, I also fight the daemons in the computer
I saw your post in the other mega, tried to reach your server, I can reach SOME computer at your address, but it refuses the connection on port 1965 where Gemini usually lives. Am here to give OpenBSD-specific advice (I'm speaking to you from an OpenBSD-running machine rn :3)
First, I would try temporarily turning off the packet filter (OpenBSD's firewall). Don't know if you even needed to touch it in the course of setting up ofc, but you know for sure something's wrong in the firewall rules when you turn it off with
pfctl -dand it starts working. You can reenable withpfctl -eMy guess is that the routing is okay cuz I can reach a machine which tells me to go away lol (my vibes from what you said are suggesting to me that you have a router doing NAT at the inlet of your local network, which you told to do port forwarding (NAT is more demonic than any Unix daemon btw)) and it's either a problem with the packet filter or the Gemini server. You can actually test this directly. OpenBSD has a very nice program called netcat (it is actually like cat but for networks :3) for stuff like this. You can run
nc -l 1965(make sure the Gemini server isn't running ofc, cuz 2 programs can't bind to same address and port at once) and netcat will listen on TCP port 1965 and show any incoming traffic. Then you can use a phone's web browser or netcat on another machine or legit like anything that can use TCP port 1965 to connect to an arbitrary host and if the packets actually come through and show up on the terminal when you connect to the listening netcat then you know the routing and firewalling is okay lol.Also check the output of
netstat -p tcp -l(netstat shows active internet connections on the machine,-p tcpsays only show me connections using TCP,-lmeans only show me things that are listening for connections (like servers)). Assuming you told the Gemini server to listen on all addresses that the machine has, you should see a line like:Proto Recv-Q Send-Q Local Address Foreign Address TCP-State tcp 0 0 *.1965 *.* LISTENin the output of netstat. If you don't, it means your Gemini server isn't running or isn't listening for some reason. If you do see something like that and it still doesn't work, take note of the "Local Address" field (and for some reason dots mean like colons in the modern sense to netstat, so like what comes after the last dot in the address is actually the port something is listening on). If it says something like "localhost.1965" it means that the server is only listening for connections on the local machine (so it doesn't get any from the internet)
Am on Matrix if you want live help possibly :3
Or make netcat listen at port 1965, reply to me, and I'll connect with my netcat and we can have a chat over TCP directly lmao (this is basically how ancient Unix instant messengers worked btw lol)
Ah! tysm for all of this. I cut my teeth on linux for many years but I have never bothered with self-hosting or much of anything to do with sysadmin & networking until very recently and this shit is a nightmare! I have been trying out some BSDs on my laptop and figured I might as well use it for the server too. I would absolutely be open to some guidance over matrix if you wouldn't mind...you are super knowledgeable about this shit and I am a babe in the woods. My goals are to have http, gemini, and email on this box and I am super overwhelmed.
I will DM you my matrix :3
Most computer stuff is way harder than it should be tbh. Arcane knowledge is one thing but BSD sockets (this whole "socket" model of talking to other machines on a network) are legit just kinda bad lol, we just keep using them like everything else people hacked into Unix cuz it's easier to keep using them (at least for capital, which is still in control of dominant computer technology, have been finding out for years just how compatible open source is with capitalism :/) than to break from the old ways and make a system where internet stuff is easier, idk something like that
Like the whole reason we even have to say
netstat -p tcpwhen we wanna see listening internet servers is cuz they also hacked a local-only (not internet related lmao) interprocess communication mechanism into the BSD sockets thing lol (Unix domain sockets). And people don't even wanna use that anymore, they use D-Bus or whatever which uses that somewhere deep down but the Linux desktop programmers donut care lol, they just wannagrillexchange messages between their apps, so now we have yet another layer on top. It just becomes so confusing eventually :/ for programmers and especially users who haven't melted their brains with this stuff for many years lolIt rly is a nightmare, will try to help
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.
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:
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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.
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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.
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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.
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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 am finally starting therapy! I found two good-seeming people who I can afford to see biweekly. They both mostly focuses on IFS and somatic therapy whereas I process things very cerebrally/verbally which is a bit of a concern. On the other hand, I tend to dissasociate a lot and hide from my creatureliness so maybe this approach will be exactly what I need.
Does anyone have any advice on what to ask during a therapy consultation? I am a bit lost.
Congrats!
Somatic therapy is generally really well received by autistic people and by chronic intellectualisers/"over"intellectualisers.
IFS should work well with your cerebral-ness but it might feel like you're a bit adrift in the process because of how it works. IFS works well with people who have a lot of developmental trauma and people who dissociate so I think it sounds promising.
Somatic therapy is very experiential, so you kinda just have to do it to understand how it works moreso than most other therapeutic models. IFS, on the other hand, is easier to learn about by reading about it. There's a couple of really good books on IFS, both of which are available as audiobooks and one of which may or may not have been "liberated" by someone I know.
I already threatened to post up the one which os arguably the best IFS book which is oriented to being accessible to a lay audience on TankieTube. I think I just need to go and make that happen. Edit: It happened.
Does anyone have any advice on what to ask during a therapy consultation?
Hell yeah, they are doing a consultation first? Normalise this shit, immediately!!
I'd go in with any questions or concerns you have about the therapeutic models, and with how the therapists work. I'd ask if they draw upon any other major modalities of therapy and how they integrate them, although maybe that's more of a therapy nerd question and it could be a very me-specific thing to ask.
I'd also go in with the intent to give them a bit of an inventory of yourself - the nature of your neurodivergence and any suspected diagnoses or self-identification with diagnoses. I'd ask about how they work with people who have your diagnosis/es. I'd also talk about the stuff you've mentioned here about how you process things and your coping strategies etc.
Last of all, I think it's really good to set intentions for the therapy. "Goals", although I don't really like the framing of "therapeutic goals" since it sets a sort of target that makes it feel like deliverables and it can create a situation where you/they/everyone feels the implicit pressure to "achieve" these "outcomes" rather than focusing on the quality of the process and going where things are needed. Goodhart's Law and all that stuff.
I think it's better to approach therapy like a ship on the seas; set your heading or your destination but know that the best route is not necessarily the fastest or most direct one and conditions will change and you will get diverted off course, often necessarily, and that's okay. Approaching therapy from the perspective of it being like a hiking trail, where the path is predefined, creates a lot of unnecessary difficulties and obstructions imo. And treating it like you're a project worker in an office job is peak late capitalist bullshit.
Oh yeah, and feel free to set boundaries on the things that you aren't ready to delve into such as saying "I am working my way through developing a better understanding how I experience my gender right now but I don't want to go into this stuff in therapy just yet because I need to hash it out with myself first/actually my primary concern is ways to manage my social anxiety and my social isolation because I feel like addressing this is going to be the most effective use of our time for the benefits I will get from it". Obviously what you choose to set boundaries on will need to be your own but, for example, if you have a lot of childhood trauma because of one specific thing and it's just too raw to deal with in therapy then I'd encourage you to name it and to say that it's out of bounds for therapy until further notice.
Thanks for your advice! I was able to collect my thoughts enough to have two good consultations where I got a good feel for the therapists.
I'm split now. I had my two consultations. One therapist does more IFS which I am more interested in but doesn't offer in-person as much. The other does offer more in person and is a bit cheaper, but seems less experienced overall.
You love you hear it.
Was there a therapist that you seemed to vibe with more?
Look, at the end of the day the choice probably matters less than you think. There was a meta-anaysis done which compared the therapeutic outcomes of CBT vs other major modalities and, while CBT had the most extensive evidence base by far (and they'd argue that it's the most robust but I would absolutely dispute this claim - that's a story for another time though) the findings were that outcomes across all modalities were essentially the same.
That includes Freudian psychoanalysis, which is absolute junk science as far as I'm concerned.
So what does the conclusion of these results point towards? Well, if you get roughly equivalent outcomes from the psychological version of mysticism that you do from what is arguably very rigourous and scientific therapy then that indicates that it's really about the quality of the relationship between therapist and client, not whichever modality is chosen.
I'm gonna say this next part with a big, somewhat personal caveat, but basically it's more about how skilful a therapist is and how well they work with you specifically than it is about the other factors.
(Caveat to say that CBT seems almost universally reviled by autistic people and I know for sure that it absolutely does not work with me, to the point that I basically tell therapists "Don't even fucking try that CBT bullshit on me" on the first session lol)
IFS and somatic therapies are arguably more complex modalities, which require a degree of skill and experience as a therapist before they start developing their skill in them. I'm not saying it's impossible to do it otherwise but I feel like most people start out as therapists first and it's only later with more experience that they start into IFS especially but likely somatic therapy too; your newly qualified and certified therapist who is very green doesn't seem like a likely candidate to be offering IFS honestly.
So I guess if all things are roughly equivalent, I'd likely go with the therapist you seemed to gel with better. You can always change your mind later on anyway.
The one who does not offer in-person appointments seems substantially more experienced and well-read. I think I might try it with the in-person person first and then switch. It was weird I felt more comfortable with the one who had more of a removed/distant demeanor.
It's funny to hear that the different modalities make almost no impact. That sort of matches my impression of the field.
I think it's important to go with what suits you tbh.
There's this comment I made here which describes a fairly recent experience I had with my therapist (starting about halfway down, in the paragraph beginning with "As a more personal example...") where I'm detailing a situation where my therapist basically was overly involved in my own internal experience; I don't need an overly warm therapist who gets too involved in my stuff and I work much better with a therapist who is kinda distant and who does the higher-end sort work like identifying themes and noticing what's going on for me when I'm dissociating or intellectualising to gently draw my attention to this.
I don't need a therapist to figure out how I'm feeling or to drive insight and awareness into the detailed experience for me and I don't need a therapist to reframe things and that kind of stuff. I'm really quite skilled at those things. This probably sounds a bit vague but I'm very details focused, bottom-up in my (autistic) approach but I can't do that while doing a bird's eye view of the larger stuff at the same time; mostly I'm just capable of recalling the past stuff, understanding how it affects me in the present, and working through the emotional content in the present.
Ask me to do the bird's eye view of it or demand that I start playing allistic communication gymnastics games and that will be at the expense of the important work I can do as detailed above - the work that basically only I can do since my therapist can't do it for me. So I have to make a choice which involves compromise and that's what I do.
Different people need different things in therapy, they need different types of therapists, and that's okay. Not everyone is gonna get you and you aren't gonna get along with everyone - this applies to friendships just like it applies to therapists. You'll figure out what you need and what works best for you as you go along, just like I have for myself.
At any rate, being torn between two good therapists who both seem to offer a lot to you is the kinda problem you want to have and honestly it sounds like either would be a good choice so don't worry too much about making the "wrong" decision.
@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.
@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.
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.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. ❤️
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
