Hello disabled comrades! Sorry the mega is late again. I hope we’re all weathering the COVID surge as best as we can.
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.
absolutely wild how common the rhetoric of “some people abuse disability aid!” is
it’s so hard to get, you need constant assessments, and it’s not enough to live off… the idea that a non-disabled person would “choose” that makes no sense
i guess it’s just a cudgel people who don’t really care about the disabled use but im siiiick of hearing it
And the cruel idiots who say this always claim to know so many people doing it. I’ve seen people online saying things like “Half the people in my street are on disability, but they are all faking, they all play football all day long.” Or claiming that people brag about faking their disability, they say things like “My neighbour pretends to be crippled and hobbles with a cane at his assessments but the rest of the time he runs marathons and jokes to me about how he fooled the assessors into giving him disability.”
Firstly as you said, it’s so hard to actually get disability and you need a mountain of evidence. And secondly, even IF someone was faking it, I don’t believe for a second they would brag about it publicly, they’d be worried about being reported and prosecuted.
There’s also the stupidity of people not realising there are different disabilities that affect people differently. For instance I saw someone say that if you’re disabled you can never leave your house because you can’t walk more than 50 metres, so anyone who leaves there house and walks is not disabled. As if there can’t be other disabilities that don’t impede your ability to walk. Being blind is a disability but blind people can walk more than 50 metres. Being sick from cancer meds is a disability but we can walk more than 50 metres when we’re feeling up to it.
It’s the whole thing of “I have this idea in my head of what disability is and anyone who doesn’t present like that is faking.”
Same thing with them claiming disability pays too much. I saw a woman online say that she’s a nurse and earns 1700 a month, and complaining that that is not enough to live on. She then said that people on disability getting 1400 a month or whatever get too much. Like if you can’t live in 1700 a month what make you think disabled people can live off 1400? The reality is you just don’t think they deserve it.
Another infuriating thing is when they claim disabled people have all their expenses paid and the money is just disposable income. When I’ve told them how little my disability is, hundreds of pounds less than they think it is, I’ve seriously had people say “Oh but you get your rent and utilities paid, that money you get is just for food and fun.” NO! You have to meet certain criteria in both yourself and your living situation to get housing benefit and I don’t meet those criteria, as many disabled people don’t. I don’t get my rent paid, I have to pay that myself out of my actual money.
I am so sick of all the lies people tell to make out that living on disability is fun and easy. It’s actually more stressful than when I had a job.
I know a few people who would be able to get some benefit from the state due to disability or unemployment and they choose not to because they feel ashamed and feel like they don’t deserve it (they do). I really hate this culture of distrusting everyone and always assuming people are misusing benefits. It’s all so fucked.
If what it takes for someone to be on your side is you being nice to them they are not concerned with justice. Thinking about this for no reason in particular as we enter year six of a pandemic that is still killing at least 500 a week in the US alone.
Shit is so bleak. Trying to stay alive another week
If there is anything I can do you know where to find me.
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I promised to remind you from time to time, so here it is:
Keep up the good work, but also keep up the good rest.
You’re a sweetheart (ಥ﹏ಥ)
Love you sweetie <3
I’ve been struggling with the definition of disability for a while (not the mega’s, but how I see it) and wanted to share my insecurities.
I feel comfortable enough to talk to you beautiful people here and not feel completely weird about my type 1 diabetes. However, anywhere else and at any other time, I feel very strange about the disease.
Outside of hexbear, I’m mostly ashamed I have it. Not because it’s my fault, but because it limits my participation in almost every activity. It’s not a disease that cripples me every day, although it certainly can if I fuck up, but when it comes to being spontaneous, diabetes is pretty unforgiving.
Oh, you thought you had a lazy afternoon before you and thus used the appropriate amount of insulin? Well fuck that, now you suddenly got an invitation to stroll through town with a few friends you haven’t seen in ages. So you either inhale an ungodly amount of glucose tablets and have a very wonky walk bc, guess what, exercise makes you need less insulin, OR you stay at home to avoid that feeling of exhaustion and near-fainting wobbliness but also don’t see those friends. Either way, it’s shit.
That’s just one of those annoying things, there’s plenty more. I feel horrible explaining this to others, I don’t like educating people on the differences of type 1 and the others bc they usually don’t care and if they know anything, they tell me I don’t look “fat enough” to be a diabetic. It’s fun, lemme tell you.
The shame however comes in those moments when I have to explain, for example when hypoglycemia hits and I sound stoned and drunk. I’m in no position to explain anything then, my brain is working on reserve power and will barely understand it has to chew the glucose before swallowing. If somebody doesn’t know the symptoms or that I’m diabetic, they kinda need an explanation that I’m not gonna die any minute now but just in case, they should keep an eye on me. So if I manage to get that out, I’m always regarded with this intense amount of pity. And that pity is the most disabling thing anyone could possibly do to me.
I sometimes just want to yell at people that if big pharma wasn’t using diabetics as their golden geese, the disease would’ve been cured decades ago. It wouldn’t be a disability but a curable disease. I wouldn’t have to be looked at like an animal in the zoo when I inject insulin in public or have hypoglycemia.
Anyway, disability comes from society not truly accommodating us, but also preventing certain groups from being cured for the sake of profit. I don’t want to be a diabetic anymore, I just wanna be able to eat something without having to take out a calculator and spreadsheet beforehand.
Sorry for the existential rant, I love you guys ❤️
Rant away, that’s what we’re here for! I know how much it sucks living like this, I have similar issues with my thyroid meds. Dose too low? Extreme exhaustion and brain fogginess to the point of being unable to function or even think clearly. Increase the dose? Now palpitations, drenched in sweat, anxiety and total brain meltdown to the point of delusions. There’s no really comfortable middle ground. It’s no life, needing synthetic chemicals to survive.
I know a few people who’re in the same boat as you are, I have such an insane amount of respect for all of you fighting with the meds. I hope that one day both you and I, and all our fellow thyroid-and-pancreas-meds-needing-people will have comfortable doses of medication that don’t fuck with our brains or bodies anymore than the diseases do. Thank you for your reply, comrade
Thanks. I hope we actually get fully functional replacement parts that work perfectly. But I don’t see that happening in my lifetime, at least not soon enough to make a worthwhile difference to my life.
I don’t hold out much hope either, but who knows, maybe we’ll get lucky.
Maybe in our next lives we’ll have perfect health to make up for this.
disability comes from society not truly accommodating us
This is definitely true for a lot of disabled groups. Maybe someone else can chime in, but deaf and autistic (I’m neither) people often have places where they live together and don’t have to deal with other people. It’s outsiders who have the ‘disability’ in these communities.
Makes me wonder about a diabetes community. Not having to worry about food because everything has already been screened seems like a godsend.
As a general rule of thumb (source) I believe people with similar or same conditions, may they be chronic illnesses, disabilities or the likes, tend to flock together, so I get what you’re saying.
Not having to worry about food because everything has already been screened seems like a godsend.
I really wish this did apply to type 1 as well. The issue is that even if you know the exact amount of carbohydrates, hormonal changes, stress factors, spontaneous events etc etc have a severe impact on your insulin needs. And leaving out carbohydrates completely doesn’t make it any easier bc there’s always traces in other foods, so eventually, you just have to guess how much insulin you need for the food. Don’t use insulin or just use too little? Have fun with the headaches and corrections later. Use just a tiny bit too much? Same as in my examples in the original post. So even if you were to live in a pure diabetes community, I don’t think any of the issues (see below) would really resolve themselves. What we need is more accommodations for everyone, and more work put into learning about each other, may you be one type of diabetic or not.
CW: Fatphobia and diabetes
The thing I’ve realized over the decades about diabetes is that people who have it do not get along very well. That’s mostly due to the different types of diabetes needing different treatments and the common misconceptions surrounding the diseases, e.g. “Only fat people get diabetes” which has done a lot to harm people who are diabetics. There’s a plethora of reasons for diabetes and none of them are sufficiently researched. What it means in actuality is that a lot of my type 1 peers from the 00s steered violently clear of type 2 diabetics, saying stuff like “It’s not my fault they’re so fat that they got diabetes, I don’t want to be associated with those who have only themselves to blame”. I have grown up with this mindset too and have repeatedly gotten angry at people insinuating similar things about me, e.g. “You don’t look fat enough to be a diabetic”. The issue, as I’ve only very recently come to comprehend for myself, was never people weighing more than others, but the fat-shaming itself. And that is, unfortunately, a realization that a lot of diabetics seem not to have come to yet. At least I haven’t seen any meaningful change in public discourse, but I am also not expecting any. Being a hidden disability and the focus being mostly on new tech that makes you even more productive so you don’t even have to check your glucose levels constantly, diabetes alienates both from other diabetics as well as non-diabetics by the same mechanisms. Thus my very bleak outlook on community building in the diabetes world.
I am so scared about everything the new British government is saying about changes to disability benefits. Apparently almost everyone will be expected to look for work except “the most serious cases.” Well, we all know they will consider almost nobody a serious case. I’m having cancer treatment, recovering from a stroke, partially sighted and recently had foot surgery and another foot surgery coming up (and these are just the main things, I have other issues too) and yet I still get given zero points on my assessments and forced to go through appeals. Left with no income in the meantime, hence begging for food on here. So I know I won’t be considered a “most serious case” exempt from looking for work. I mean, multiple doctors have written letters to the DWP saying I’m totally unfit for any type of work and need help with basic things, yet the DWP always finds me fit for work and I have to appeal. With these new rules, it will be impossible for me to survive. Not only will they find me fit for work, which I can’t do, they are threatening to cut disability benefits by over £400 a month. They are already so low it’s a struggle to survive. But at least when in receipt of benefits I can just about afford rent, utilities and food. No extras, my clothes are absolute rags with actual holes in them as I haven’t been able to buy new ones in years, and no enjoyments in life, not even something as simple as renting a film off amazon as there’s no extra money for that, so life is boring, miserable and pointless anyway. But at least I could keep a roof over my head, and when not going through an appeal as I am now, buy food. Even when going through an appeal as now at least I always had the hope of winning, being able to pay off the debts accrued during the appeal, and be OK for a couple more years before going through it all again. But now, my situation will literally be incompatible with life. I won’t be paid enough to survive on, and I’ll be forced into work that I’m unable to do. I truly see no way out of this but suicide. And even that is difficult, being disabled and having the easier methods made illegal. There are so many other ways the government could save money but they choose to make the most vulnerable people’s lives impossible to continue. And they don’t even have the decency to legalise assisted suicide to make it a bit less painful.
I’ve spoken on here before about how doctors and pharmacists are trying to stop me accessing my meds. I had one doctor try to stop prescribing me a med that was prescribed by a consultant at the hospital - because that med is “too expensive” at £2 per pill. I had to fight to keep receiving it. Then when the neurologist prescribed me another pill, the pharmacist complained about the cost (£12 per pill) and the GP’s surgery will only prescribe me 8 a month because of the cost, instead of the 30 a month the neurologist ordered. Then they tried to stop my topiramate because it can cause birth defects and I won’t take contraception (check out my username, I clearly don’t need contraception). The latest one happened today. As a side effect of my cancer treatment I have developed terrible eczema. It’s so bad that it gets terribly infected to the point that I have been admitted to hospital with these infections countless times. I sometimes wake up with my skin fused to my bedsheets with dried blood. I’m supposed to get 2 bottles of eczema cream a month. That’s barely enough as it is. Now they’ve cut it down to one a month. No medical reason at all. It’s just it will save the country £20 a month. Stupid, short sighted fake saving that will end up costing more when I have to spend more time in hospital. I hate this shitty world. Everything is always difficult, it’s always a never ending battle to get the absolute basics.
That’s awful. I’m so sorry to hear that. It’s absolutely contemptible that your healthcare provider isn’t listening to you or meeting your needs. I’ve often felt dismissed, unseen, unheard, judged, shamed, disrespected and condescended to by doctors who flat-out refused to treat me. It makes me incredibly angry, and I’m equally angry that you’re experiencing that – especially when you’re fighting cancer.
I just can’t deal with all of this much longer.
It took them 3.5 years to diagnose my cancer in the first place, because they kept brushing me off, refusing to do any tests.
All these tech companies dropping DEI initiatives has me a bit concerned.
- How many other corps are going to follow suit when the news dies down, and it becomes ordinary?
- Are they still legally required to have disability accommodations?
- Did I literally pick the worst possible time to get diagnosed with autism as an adult and request accommodations based on that?
- If my team ever finds out I’m autistic, will they assume that I’m a fascist piece of shit like Elon Musk or just treat me like an eternal pissbaby?
My contract agency just submitted the paperwork today, so fingers fucking crossed I guess. What’s done is done.
I don’t bother disclosing anything to jobs or coworkers anymore unless absolutely necessary. About a year before COVID I worked at a place which had a fully remote guy who was “allowed” to do it because he was a “rockstar” — not my words. I asked if I could also work remotely full-time because it would accommodate my medication and glucose monitoring needs better and was given a big fat emphatic hell no. Then not too long later it turns out we really were just capable of being fully remote completely, after all. Funny, that.
The suits and their toadies (see: everyone) immediately jumped on the “I’m more productive at the office” bandwagon, so I do not assume they give much of a shit about the welfare of anyone who actually needs help. Until it’s them, of course. Personally I’m living for that day to come, and in this era of unmitigated & continually intensifying plague such that can be dubbed “quad-demic”, it certainly will.
Having the same concern. The news about NASA or some place like that did say “Diversity, Equity, Inclusion, and Accessibility initiatives”. Are they going to change the policies to no longer provide any disability accomodations, and I will be 100% unemployable because I need these?
I read this and I feel so angry for you.
Did I literally pick the worst possible time to get diagnosed with autism as an adult and request accommodations based on that?
Get them while you still can, I suppose…
If my team ever finds out I’m autistic, will they assume that I’m a fascist piece of shit like Elon Musk
incoherent ranting about Elon Musk and fascists
This is what makes it so INFURIATING when the media defends his fascist actions as “oh, he’s autistic, he doesn’t know better”. I am autistic, it probably affects me more than it does him (though he can just throw money at any problem), I have a lot of difficulty with daily life and got no social skills at all, that doesn’t mean that I would go and do a nazi salute on the big stage. Most of us won’t. Didn’t the nazis kill autistic people? At least those that they didn’t see fit for “useful work”? Why the hell would I uphold the ideology of those who would lock me up in a mental institution and then starve me to death or perform horrible experiments on me?!
I guess that’s what being
does to your thinking. Even if he wasn’t rich. They think they’re is untouchable. To the average USA person, the nazis are an abstract idea, something that happened far away while they were comfortably sitting on their continent. Their country didn’t get invaded and destroyed by the fascists. The fascists didn’t massacre their people. They didn’t need fight a war against them for years with incredible sacrifice to expel, and then somehow recover and rebuild the country after that despite the death of millions. They think pretending to be a nazi is “edgy” and hilarious because they are so detached from the reality of what fascism is (otherwise they would see that their own country is inflicting it onto the world right now).And of course, this guy Elon has his class interests. He isn’t ignorant, he understands perfectly well what he is doing. Fascism is good for his class interests.
Of course, the same media ghouls who spent the last years screaming about how anyone who has even the slightest opposition to
is anti-semitic, will do everything to defend this. Common class interests. Same empire. Death to them all.I hear you.
Fingers crossed on your paperwork. I hope it works out for you.
I’m presently pursuing diagnosis for ADHD (which is a huge frustrating journey), and I’m hopeful that treatment and accommodations will help me find academic success, but the state of our local university is grim, and the options for neurodivergent people (even if it’s “just” ADHD) looks grimmer.
I worked in disability care for eight years, and spent the latter half of that trying to organize, unionize and lobby my state legislature for a higher rate of care. I mostly worked in group homes for adults with intellectual and developmental disabilities. The standard of care was abysmal.
A narcissistic part of me feels like I, alone, stood up to the abuse and negligence in my workplace, and that I, alone, made an effort to rally my coworkers to do something. That narcissistic part of me looks back at the times I tabled for the DSA, the IWW, the times I lobbied with the SEIU, the times I tried to put a stop to ableism in the group homes where I worked, and that part sees all the people who failed to act. That part of me lays the blame for all this at the feet of citizens who that part of me views as careless, cowardly and unempathetic.
I know that part of me comes from a wounded place. I know that people have fought harder than I have. That the fight continues and we’re not alone.
But damn is it hard to resist the urges of that wounded, resentful, bitter part of myself.
Nerve pain is fucking bullshit and I’d cut things off if phantom pain wasn’t a thing why can’t I have drugs to knock me out when this happens but no we have to nickel and dime people over stuff like morphine and Xanax fhdjssjdbekslmfbffbfjj
Hi. Migraines suck. I love you all.
Have you tried rizatriptan? It worked really well for me. But then I had to stop taking it when I had a stroke as it’s contra indicated for stroke patients. I’ve tried everything else, including nerve-blocking injections in my head. Nothing works.
I’ve been wanting to ask somewhere, but anyone with chronic pain also have sensitive organs? I recently had multiple ultrasounds done on my abdomen and the procedures really hurt when they pressed. I told my doctor and she said it could be because of my chronic pain disabilities make me more sensitive, I looked it up and it is called visceral hypersensitivity. It’s either that or my organs are doomed.
I’ve been having weird stomach pain for like 4 years now after I eat. Had all kinds of tests done, but nothing conclusive. Luckily when I was injured, the damage to my organs wasn’t too bad. One of my lungs collapsed and that was it.
The hard part is other people can’t feel what you’re feeling and everybody’s pain thresholds are different. Medical professionals can’t always know what wrong because they can’t read your mind.
You take medication for your organs?
I have IBS and a general lactose intolerance, it wasn’t unusual for me to have pain digesting and using the bathroom before going vegan (especially around my period since I think I have endometriosis). I was prescribed a laxative (I think it was a generic of Miralax) to help. I thought my body was getting better digestion wise but I think I screwed up too much before eating a bad diet and suddenly I was having extremely bad pain in my abdomen. My doctor has so far given me omeprazole which seems to be working but I still get pain sometimes. My ultrasounds revealed gallstones and liver lesions (I haven’t touched alcohol in like 6 years btw and I was never a heavy drinker). I think I might be having gallstone attacks now, but I haven’t discussed with my doctor yet.
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Well the ultrasounds were because I was having a lot of intense pain in my abdomen that would stay for a few weeks and then go and come back, etc. I’m taking omeprazole now and it seems to have helped but sometimes the pain comes back. I’m back to being more functional but the actual ultrasounds hurt a lot. My doctor insists it shouldn’t have hurt. I think I was having gallstones attacks before but I haven’t talked to my doctor yet to confirm this, since the ultrasounds revealed gallstones and lesions on my liver.
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Bloomer-ish post coming through
Got 9 hours of sleep last night after a couple of weeks of really inconsistent 4-5 hours a day. Feels good to not be in complete zombie mode, although I’m still exhausted.
Also my knee pain has gotten a little better after I discovered I have hyper mobile joints, which means that fully straightening my legs while walking or standing will slowly wreck my tendons. It’s taking me a while to adjust, but the good news is that I think I already feel an improvement just after a few days.
Happy to hear your knee pain is getting better
Even happier to hear you got 9 hours of sleep, that’s some solid sleep time :)
day 3 no sleep. not enjoying strattera
3 days??
Sorry if I’m being annoying but, how are you doing? Do you need anything?
you’re not annoying, it’s sweet to ask. i’m okay, mostly feeling like my brain has been wrung out to dry. i’m sure it will level out soon. but damn am i seriously rethinking my choice to try something new lol
my brain has been wrung out to dry
Gosh this sounds horrible. And I mean, if you truly feel like it could level out, you could try, but I agree, this might not be the best medication for you lol. Get well soon and don’t let the meds wring you out anymore than they have to
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