“All bodies are unique and essential. All bodies have strengths and needs that must be met. We are powerful, not despite the complexities of our bodies, but because of them. All bodies are confined by ability, race, gender, sexuality, class, nation state, religion, and more, and we cannot separate them.”
From “What is Disability Justice” (Adapted from Patty Berne’s “Disability Justice – A Working Draft”, Published in Skin, Tooth, and Bone: The Basis of Movement is Our People, A Disability Justice Primer, Second Edition.
As always, we ask that in order to participate in the weekly megathread, one self-identifies as some form of disabled, which is broadly defined in the community sidebar:
“Disability” is an umbrella term which encompasses physical disabilities, emotional/psychiatric disabilities, neurodivergence, intellectual/developmental disabilities, sensory disabilities, invisible disabilities, and more. You do not have to have an official diagnosis to consider yourself disabled.
Mask up, love one another, and stay alive for one more week.
Old lady at the food bank gave me extra fruit because she said I’m a sweetie :)
Bc you are
I had my most recent physiotherapy appointment today. They said I need new orthopaedic inserts in my shoes, which the NHS doesn’t pay for, I have to find the money for that myself. They also said that as all other treatment so far has failed and I am still debilitated to the point of being barely mobile, they recommend shockwave therapy to try and repair some of the worst injury. However the NHS is gradually cutting funding, and outright stopping paying for treatments that it used to pay for. In fact, just yesterday there was an article online where the journalist was talking about how her elderly father needed his ears syringed and her child needed treatment for warts, both of which the NHS used to treat for free. But now the NHS no longer pays for those and the woman was told her father and child would have to go private.
Well, same thing with the shockwave therapy. Fewer and fewer NHS hospitals are offering this as the NHS gradually gets dismantled, and my local hospital’s physio department can’t offer this. My physio said she could refer me to go private, but I have to pay for that.
I just despair at the state of this shit hole country. First they took nearly 4 years to diagnose my cancer. They don’t warn me the treatment can cause strokes. Then I have a stroke and after all this they stop my disability benefits, leaving me without income. Then, due to long waiting lists, I have to wait so long to start physiotherapy that the damage is already done. Then when I finally get physio, it’s too infrequent due to having so many patients and not enough appointments, so the problems I’m having gradually get worse instead of better. Now there’s a treatment that could help but I, who have no money, have to pay for it myself. And then this shitty government complains that there are too many disabled people and the benefits bill is too high. THIS IS WHY THERE ARE SO MANY DISABLED PEOPLE! Because it’s impossible to get prompt or adequate treatment and so we never get cured, we’re left to rot until it’s too late and our problems are permanent!
But that’s stupid and doesn’t save any money! You need to have the machine anyway for kidney stones! You already have the machine! It’s not even that expensive a machine in relative terms!
Everything about the way the disabled are treated is stupid and doesn’t save money. For instance if they had more physiotherapy appointments to start with I wouldn’t have ended up so disabled in the first place. But they’d rather save a bit of money by providing fewer appointments. It’s the same with every medical thing in the UK. Cut the NHS down to save money but then people end up sicker, more disabled, can’t work and rely on disability benefits. So cut disability benefits. People become homeless and hungry and end up in hospital with malnutrition and hypothermia, and eventually have to be put in a bed and breakfast, and this is all more expensive than just continuing their benefits.
But this isn’t even a short term saving or anything, they ALREADY HAVE THE GIZMO. It’s already in the building! They’ve got people trained to use them. They aren’t and can’t get rid of the machine or the training!
They’re just being cocks for the sake of it!
Got taken off my route yesterday for bullshit so went to a farmer’s market that I was sad that I was originally going to miss out on. I spent 2 hours canvassing for both the PSL and my webdev business. Turns out my name is getting out. I ran into 2 people that have heard of my business and/or me. I even had a fellow webdev say from what they saw on my sites, I know what I’m doing. Which is great except I still ain’t getting clients… 2 years in and I’ve made 3 sites I think for people and 2 were freebies.
Some feedback I got was that they can’t afford what I charge. Even though I charge less than everyone else around(not by much but after my direct competitor’s hidden fees, it’s about $500 less up front and $30 less per month hosting). So now I’m considering learning a web builder to start offering budget sites. I did mention to someone that I have a “pay what you can” option that I don’t advertise for like-minded people(lefties). I do have some experience with Squarespace but not the biggest fan. I could probably handle it for like making $500 sites in a few days. If they have all the assets up front, I could easily crank one out in a day.
Mental health update: I called in on Thursday before my “weekend” so that ended up being 5 days off. I spent my newly acquired time off playing the fuck out of some Satisfactory. Factory automation games makes my brain happy. I think I’m gonna keep that in mind for when I start to fall down the depression hole in the future. I think I am gonna start over though and speed through to the end with some blueprints I found that build everything. Satisfactory isn’t my favorite of the genre and playing it is just making me wanna play Factorio, DSP, or shapes2 again.
I think you’re running into why corporations keep using hidden fees. It’s hard to compete with lies when you’re honest.
Which is incredibly stupid. Is lying that normalized in the NT world?
Anything technical you get lying. I have a friend who works for a pretty large webhosting company and according to him a good chunk of the job is just lying to clients in various ways. Either you lie about costs, or you lie about what you can do (Either overplay to sell or underplay because you don’t like their idea), etc. etc. Although his role isn’t super consumer facing
For what it’s worth, I’m glad you had a 5 day weekend, you definitely needed it
The thing that sucks is that by the end of it all, I’ve missed a full week of work. I was sort of productive though. I mowed the yard and it really needed it. And worked on AI-filter proofing my resume. I’m even testing out some lying by adding a bit of backend tech that I really haven’t touched. After running my resume through 3 different AI bots to test and improve, one was like “Add MongoDB and Express.js because those are buzzwords that corpos like!” so I did. I’ve actually done a small bit with Mongo and Postgress but it’s database shit so at the end of the day it’s all just queries. What cracks me up is when it was like “Put Node.js on there for more buzzword rizz!” because that’s just the package manager/delivery system for JS stuff and everything else I have listed obviously suggests I am able to type “npm install xyz” into a terminal. But even that is sort of a lie because I mostly use pnpm instead of npm rofl.
I don’t want people to see me or know I exist, I want to walk outside without being perceived or seen
Who said that?
If I could be invisible on command I’d do it all the time, especially in public
Haven’t been too active in this thread lately as I’ve been feeling absolutely terrible. Not only exhausted from my lowered thyroxine dose but had a bad reaction to my new migraine pills which left me basically bedridden for several days. My landlady and her guests didn’t even check on me to see if I needed anything, or if I was still alive. I was just in bed, hungry and ill for several days. So i won’t be taking the migraine pills any more, which sucks because they actually drastically reduced the migraines. After like 10 posts on mutual aid and lemmy, someone finally sent me a justeat giftcard so i could order some ready made food, and getting to eat helped a bit. (One of the side effects of the migraine pills was a huge amount of excess stomach acid to the point I was writing around in bed, unable to get up, feeling like I was being burned alive from the inside. So giving the acid some food to digest helped.
I felt a tiny bit better today and managed a short walk outside, just a few minutes. I needed that so much. haven’t heard any more from dignitas, they’re taking so long to respond. But now I’m feeling a little physically better I don’t feel so immediately desperate for assisted suicide. But the universe hates me and so I’ve probably jinxed myself by saying that.
btw has anyone seen the film “Me before You,” about a man going to Dignitas? It’s really good!
Glad someone was able to help you out, comrade, and that you were able to walk outside a bit. I’ll have to check out the film, is it streaming somewhere?
It’s on amazon prime in the UK, don’t know about elsewhere.
It’s so exhausting. I have to live my entire life with a brain that just doesn’t work. I break so easily.
Just now I went to empty my laundry out of the washing machine to find that I hadn’t turned it on. But I remember perfectly turning the dial, the clicking of it in my hands, and pushing the button to start the wash. I remember hearing it bumping from my room. And none of that ever happened. And then I had a full mental collapse, because I’m remembering things with perfect clarity that never happened, but I can’t remember what I did five seconds ago.
If I was normal I could spend my life trying to accomplish things. Trying to have fun and be social and date and work and change the world. But I have to devote all my time and energy to trying to have a functional brain because mine is so broken.
And now I have to go to work and smile at customers and act like I didn’t just have a mental breakdown. I wish I could swap my brain and body with a healthy person’s. I wish I could live someone else’s life.
Me too. I used to have these intense, intrusive (but pleasant) visions where I’m a healthy, able bodied Australian living a fun life (so the total opposite of me in every way.) I wish I really was that person.
oof… hit right in the relatables
this exact situation happens to us on a fairly regular basis
wish we could say more than mood but… mood
I feel this. Except in my case it’s my body that is so broken I can’t do anything except struggle to get through each day. It’s awful being a lump of meat and electrical activity with consciousness.
I’m getting tired of dealing with dignitas. They’re so disorganised and take ages to reply. I became a member a while ago and have been emailing them about things since, like discounts. Last week they finally responded with an official letter, asking for proof of capital/income to determine any possible discount. I’ve just been waiting for my next bank statement to come through, proving I have no money, to send them. But then today I got an email from them saying they can’t find my membership declaration and asking me to rejoin. How disorganised and unprofessional is this? I just don’t know if I can keep dealing with them. They take weeks to respond, require an insane amount of identification and verification of everything that would be very expensive to get hold of and now they’ve lost my membership and want me to go through the joining process again. I don’t know how anyone has ever had a successful su1c1d£ with them.
And I’m having trouble getting anywhere near enough donations for the course of shockwave treatment recommended by the physiotherapist. If i could walk around outside again as much as I need to, I wouldn’t feel so su1c1d@l in the first place. The fact that treatment exists that could help me so much, but is so hard to obtain, is heartbreaking and so frustrating.
On the plus side I received a letter of support from the neurologist today, confirming my neurological issues. I can use it for my benefit appeal and dignitas.
I finally got a letter from Dignitas, asking for bank statements to show I’m on a low/no income, to see if they’ll give me a discount/free service. I’ll have to wait a few weeks until I get my next bank statement before I can send it off though.
I’m so glad my landlady’s daughter is leaving today. I really think she’s the most horrible person I’ve ever met. Despite being asked not to spray perfume around and being informed it gives me migraines, she just keeps doing it. I also heard her loudly insulting my appearance, not even trying to keep her voice down. Like, sorry I don’t look like a supermodel but I’m kind of ill, you know? I was upstairs ill in bed for several days and not one of them even knocked on the door to ask if I was OK or needed anything. And when I felt well enough to come out, the daughter said, as I walked past her, “You old witch.” Totally unprovoked, I hadn’t said or done anything to her. She even trained her kids to call me Scary Mary instead of my name.
This horrible woman wastes so much food, too. When she’s here, every day she goes to the supermarket and fills the fridge with a ridiculous amount of food, most of which gets thrown away. She doesn’t even ask if I want any before throwing it in the bin. I remember once she was going to throw away a whole, unopened rotisserie chicken as she hadn’t used it and was going home and didn’t want to take it back in the car with her. I asked if I could have it and instead of simply saying no, she screamed in my face, telling me what a worthless waste of space and beggar I am, and how dare I ask her for favours. The next time she was on the phone to my landlady, she had the cheek to pass on a message for me, asking if I could lend her £900 so she could buy a puppy right away as she didn’t want to wait until payday! I don’t even have money to lend, but if I did why would I give it to someone who throws food away in front of me and insults me continually?
And she is making her children very obese and unhealthy. He elder son is only 11 or 12 and already so obese he can hardly move. She just lets him sit on his device all day and drastically over feeds him, she doesn’t care about his health at all. She wastes money on nonsense constantly and then pressures my landlady, who is in debt and living off a pension, to take out more debt to give her money. Just an absolutely terrible person.
An absolutely terrible person on all fronts, I’m amazed these people actually exist. Sorry you had to deal with her again
I hope dignitas don’t take too long to reply when you send them the next bank statement.
Thanks. It’s really my landlady’s fault for making her such a selfish, spoilt brat. I guess when someone’s life is too easy and everything is handed to them on a plate, they never develop any empathy for others.
I’m kind of resigned to the fact that dignitas is going to take a long time for everything, and maybe be unsuccessful though. Right now it’s just like something to hope for, for the future. Depending on how bad I’m feeling, how much pain I’m in, sometimes I do feel desperate about accessing it soon but other times I feel I can wait for however long it takes. I have about three weeks till my next bank statement, so I can prove lack of income and capital, then if I send that off and they get it a week later, then I might hear from them a couple of weeks after that if I’m lucky (but it might take longer if they have to spend time making a decision on my finances.) If, after all that, they are willing to do it free, then I have to gather medical evidence, and go through the process of getting accepted for the actual death on medical grounds, which they say usually takes up to 4 months. Then after that raise money to pay for all the necessary ID documents, send off for them and wait. Then the whole fiasco of having no relatives to accompany me and will they not go through with it because of that? Then raising money to travel. The whole thing is kind of overwhelming when i think about it like that, and the lack of relatives seems like it will be a huge stumbling block. So I will just keep on doing whatever i can towards it whenever i can.
It is a lot, hope you’re doing okay considering everything. Sounds like the apple didn’t fall far from the tree with Landlady’s family. At least they’re gone now.
Thank you.
I have my first therapy appointment with this person tomorrow. I tried to communicate in subtle and indirect ways that I kinda think about dying all the time. The problem is, if they don’t get it, then I may struggle to communicate what I need, but if they do get it, I fear a hospital trip in my near future, and I don’t know if I can handle another hospitalization…
what has worked for me is telling them you don’t have any actual plans to do anything
spoiler
example:
Q: Do you ever feel like harming yourself or want to die?
A: sometimes I just wish I didn’t exist, but I know that would hurt the people who care about me, so I just <take a nap, do a chore, etc> to distract myself, and keep telling myself this feeling is temporary, and that usually worksand if you need help with the distraction part, then maybe try telling them that? like:
A: sometimes I just wish I didn’t exist, but I know that would hurt the people who care about me, so I just <take a nap, do a chore, etc> to distract myself, and keep telling myself this feeling is temporary, and that sometimes works but it’s a struggle, and I wish I had some medication that I could take when I feel like that to help quiet things so I could get my head on straight and remember how much I have to live foryou are so courageous for even trying
I believe in you.Thank you for the support and advice! I’ve usually done similar, indicating I don’t a plan, and it works. Just when I meet a new person I get nervous.
Well, I’ve not been hospitalized, so that’s a good deal.
I don’t know about your local jurisdiction, but as far as I know they only hospitalise if there’s active ideation and even then it’s on the discretion of the care provider. If you make it clear that it’s passive ideation they have no reason to hospitalise you.
This is usually true, but there was at least one occasion where I went to the “mental health urgent care” because one of my meds was making me severely dehydrated. They referred me to the emergency room, saying they would call ahead and sent a note with me to explain what’s going on. When I got to the ER, they put me in one of the psych rooms and were preparing to send me to the local psych ward. I ended up getting my mom involved and both of us had to fight to keep me from going there and to get them to take my trouble seriously. I agree that most of the time they would only hospitalize for active ideation, but sometimes doctors suck.
I know everyone’s going through it rn, and I wish I could cheer you all up with more than words. It’s frustrating that I can’t make your pains and worries go away, and I feel helpless in the face of all your hurt. But I want you to know I believe in you. No matter what you’re struggling with, no matter what you’re going through, I believe in you. You can do this, no matter what.
I love you all
<3
deleted by creator
I’m going to reply to both your posts here.
School stress post:
As a fellow 30 something year-old, I agree that being around and interacting with younger people is a little different and at the risk of sounding like an “OLD” kinda hard. This feeling is definitely exasperated by our neurodiversity and while I can’t say that I know what it feels like to be enby, I’m sure that contributes to it as well. After all we live in an incredibly patriarchal society that punishes anyone who does not stay in the box they were assigned. Maybe you’re internalizing that and it perhaps leads you to feel weird and like some kind of “creep with ill intent” as you say.
On your question about making friends and the age gap dilemma, is your main concern with being seen as wanting to date them or more so the assumption of younger people not wanting anything to do with an older person?
Post reply rejection:
As someone who spends a lot of time in their head and rarely shares my opinion with others IRL, the few times I do post online and receive little to no engagement kind of bums me out. I don’t know how to explain it but it kind of makes me think that I really am a big weirdo with unpopular opinions and it takes me right back to high school. I try to forget about it by doing something else but that is definitely not the healthiest way to deal with that whole deal.
Good luck at school and on your journey discovering your true self, comrade
spoiler
I assume that they see me as old and because I’m awkward and neurodivergent, socially inferior as a result. I want to fit in, I want to have things in common, age is an immediate visual differentiator. I assume that people look at me and instantly clock me as a guy who is in college but on older end. I don’t think I look 20. I assume that 20 year olds know the difference between them and myself. So before I’ve even talked to anyone, I already feel that I’m going to be older than everyone. The college demographic is 18-24, while there are older people, most of the students aren’t even 25. I don’t get a set of 100 kids my age to just flock to.
I mean my concern is being friends with someone and then catching feelings and then I find out how young they are, or they find out how old I am, and then we have to decide if we can mind the gap.
Idk, I guess the normal brain can just like, let things slide off it. I remember things. I’d love if I could magically forget everything, but I can’t.
more venting, I wrote a fragment of an 19th century speech on accident
despite my best efforts, I am indulging in food and drinks
I actually haven’t eaten since breakfast, I’m too frustrated and can’t get myself to move. It’s been like this all day, probably all week.
I keep hoping that maybe someone will step in, say something, but I’ve been fighting the call to the void for six years now. I wonder if it would come as relief to some in this community to not have to reckon with my poor writing anymore. We’re not in the business of giving people reasons to live, you know. It’s far more important that we pat ourselves on the back as we sink to the depths in our watery graves, lest anyone face the tantalizing thought that they ought have done more or said more to help their fellow human being. I affirm your misery, you affirm mine, and we do jack shit to improve the conditions upon which we have so sanctimoniously staked our lives, and our all too early deaths.
Certified Bad Post by SterlingPooper
how normal is it to feel rejection dysphoria when people don’t reply to your comments? because it can be frustrating when i’m posting with the intent of conversing and i get a couple of upvotes, and it’s like, did you really read this? i think you think you read it. i type most comments with the idea that someone might have something to say. but i like, want to delete every comment i make that doesn’t get a reply within say, 24 hours. i think it’s unfair that power users are like, loved and regarded, and the rest of us are just peasants hoping our shame and dysphoria is interesting enough to get some stranger to send an emote.
i just want to cope better as a neurodivergent person, as a queer person, but the site is unreceptive to those goals. don’t prop yourself up as a place for people who face these sorts of struggles and then have an attitude of “heh idk read a book, go outside, bother someone else” when people take that up in earnest.
but every comment i type, i’m like "nobody is going to read this. they think i’m faking, they think i’m a man in a dress, they think i’m playing dumb for sympathy, they think this and that and this" and every time nobody says anything those thoughts are all I have.
I said this in the trans mega, but I know how I would respond if I saw me, if I read my comments from an outside perspective.
I do read your comments and often relate and empathize and feel for you a lot. But my brain makes me struggle to communicate, or sometimes I’m not able to at all, so I usually am not able to reply to comments, even when I REALLY want to. I have thoughts and things I want to say and reply to you with but my brain won’t cooperate. And I really want to reply to your comments but my brain is like “haha, no, fuck you! You will sit here staring at the screen and crying due to your inability to put your thoughts into words that make sense! And people will continue to feel alone!” and I hate it especially because I know how bad it feels when you post a vulnerable comment when you’re suffering and no one says anything… I don’t even know if this makes any sense and I hate that I can’t make the words to match my thoughts in reply to what you’re actually saying and experiencing!!! But I want you to know that I care about you and feel for you and want better for you, because you deserve better, even though I’m not able to be a human and reply and converse and stuff. This is probably a shit-ass comment but I think I’m gonna send it anyway in hopes that you know someone really is fully reading your comments and cares a lot. I am so sorry for your suffering, I hate it. I have so much love for you!! & I hope this doesn’t come off as weird or anything, aaaaaaaa!
I’m guessing I’m not the only one in a situation like this. Just know that the lack of replies likely doesn’t even have anything to do with you, but just that we’re all different levels and types of disabled and lots of us just can’t. But my brain is hard on me, too, like it sounds like yours is, so I understand where you’re coming from. <3 I wish you all the best!!
I read your posts/comments every time I see them, and I upvote them too to make sure you know someone listened. I also sent hug emojis to let you know I care and don’t want you to feel alone. The reason why I don’t reply is mostly bc I don’t know what to say. You’re not a bad person, and your not a weirdo. You’re just as appreciated as everyone else here. However, I for one don’t know what would help you, and that’s what usually keeps me from replying. I would love to send you more than the occasional hug emoji. Maybe it’s just me, maybe I’m unable to grasp how you feel, but I do certainly want to try and make you feel heard and seen.
Please don’t think you’re not welcome here, bc you are.
When I first started college we had a few people in our year that were around 40. Honestly for people aged 30 I wouldn’t classify them as significantly older than the majority of our year that ranged between 17 and 25 with most people being between 18 and 20. The people that were on the older side usually found each other for socialising because people who are 18 can still behave kind of childish and as a full adult it can be tiring to only socialise with such young people.
However, there was no awkwardness at all around the age gaps and when it comes to talking about and working together on assignments we were all just classmates who wanted to score well. Usually the older people take the classes more seriously and then become friends with other students who take their classes seriously.
This dynamic is different between schools and countries but from my perspective it’s not you who will be weird for the younglings, it’s the younglings who will appear a bit childish to you. This holds even if you have less confidence and are less skilled in socialising with neurotypical people.
I am so sorry, but I need to vent, and the only person I talk to has disappeared with no notice (probably just overwhelmed with life stuff but I hope they’re okay. I’m worried.)
I am in overwhelming pain. My chronic intractable pain has been so much worse lately. Probably at least partially due to stress because everything is fucked. I can’t afford my next pain medicine refill, and I’m nearly out, and the friend that disappeared usually helps me cover it. I’m disabled and can’t work and have literally no money. So I’m just fucked. Even WITH the meds, I’ve been struggling to handle the pain and it’s scary. I genuinely don’t know how I’m going to survive without any kind of pain control. Not to mention the withdrawal. I am scared. I am scared I am going to get overstimulated and overwhelmed from the pain that I go all stereotypical autistic meltdown and shutdown and bash my fists into my head and hurt myself, and I feel ashamed and weak that I can’t just deal with it like a normal person. I don’t know what to do. I’m so stressed and in pain and anxious I’m dealing with dissociation, depersonalization, derealization way more often than usual. I don’t know what to do. I don’t know how I’m going to survive. I don’t know. I’m fucking scared, I can’t take this pain. I’m sorry for whining and being weak especially when so many have it so much worse than me. I don’t even know if this makes sense. I can’t think.
Sorry to hear this. Life is awful in pain and unable to get the help you need. As gingerbrat said, there’s mutual aid, however it’s a lottery as to whether anyone will answer or you’ll get enough. It’s a sick world where we all need to post our sob stories online and compete against each other, hoping someone will choose to help us over the others.
You are not whining, and there is nothing to be sorry about. You’re in chronic pain and that’s fucking scary. Don’t apologize, I’m glad you shared your story.
As for actual help with your problem, you could try and make a mutual aid request and ask for money so your next refill is covered at least. It’s a temporary solution, but maybe your friend will contact you once they’re better.
I can’t imagine how horrible your pain must be. Just know that I hope you can get your painmeds very soon. Sending a lot of love to you, friend
Why is everything always awful? I just have the constant refrain “I fucking hate being alive!” Going through my head 24/7. Still can’t walk, in pain. Struggling to get the donations I need for physiotherapy. Trapped indoors, going insane with frustration.
I wanna help you get out of the house so bad and it’s driving me nuts that I can’t do anything but share my thoughts with you. You deserve better
Thank you. Even having friends to talk to on here improves things a bit.
I just used one of the nonsense words i use to remember medical stuff to a real person.
This has been haunting me. The’yre gonna think I think there’s a threevis. (Note this is not the actual thing I said, but a similarly stupid thing)
venting
I don’t think it’s normal to get stuck at the same point every day in my routine, but I also don’t know how to address it. I’d rather sit around than take a shower and get dressed, and even though I’d really rather be doing stuff, days like today happen where I don’t do anything because I spent all day wondering why I couldn’t just get dressed. I’d rather atrophy than like, fight my brain.
It’s just kind of what happens now. Time to stretch? Time to wash up? Time to get dressed? No, it’s time to lay around until 7pm in leggings and a tank top with unwashed hair constantly in my face. Can’t commit to watching anything, going anywhere, doing anything. I just had lunch. I’m gonna pass out in my bed in an hour so that I can be wide awake at 4am. Christ.
There are times it feels like it takes 150% brainpower to function, and people, whether they realize it or not, are expecting 150% from me by treating me like I’m normal. It’s a lot.
