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gingerbrat [she/her] @hexbear.net

Disabled Community Megathread from December 1st to December 14th

We're in for another two weeks of struggling, yet we are also never alone in these struggles. I hope that all of you find some respite despite the issues you're facing, and that you know you are appreciated, loved, and respected here.

Friendly reminder to please use ::: spoiler spoiler tags and content warnings [cw] Hexbear CoC ::: for sensitive content that falls under Hexbear's Code of Conduct. You can find the spoiler tag here:

After clicking it, substitute the second "spoiler" with your content warning and the three underscores ( ___ ) with your sensitive content, and you're all done.

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.

119 comments

  • CW: Doomerism. Probably trauma dumping.

    • It's not doomerist, but sadly, a very accurate assessment of how things are. I'm gonna be a hopeful optimist and say "It can still be changed", because I truly believe it can.

      Unfortunately, you're right, it really is this system who taught us, and oh my, it has taught us well. This exploitation you describe is all too real and I've seen it too.

      I want you to know that there's more people like us out there who do not pounce on others like this; people who accommodate and care instead of hurt and exploit. Don't give up hope yet

  • This is after the sudden death of Twitter user @MECFSComrade, Megan Pendleton, who was a beloved activist and friend to many suffering with ME/CFS. I am sick of seeing us die, killed by the negligent systems and people around us, many of them with the gall to call themselves "comrade." I am still mourning the deaths of Alice Wong and Leslie Lee III, and now here is another. How many more will it take? Too many. The abled have so much blood on their hands, and they better pray to whatever power they worship that they are never made to answer for it. COVID kills. Wear a mask. Support us while we are still here, or you are no better than the enemy.

  • Took a Vyvanse and got 4 essays and all my other college assignments done, going to go pay this bill and turn in my rented textbooks and then it’ll finally be good riddance.

  • I got a bike for the first time in 5 years

    I rode a bike for the first time in 5 years

    (took half an hour to go somewhere 8 minutes away)

    • Awyiss riding bikes is amazing, I'm so happy for you

      And don't worry about the speed, the important part is that you got to ride a bike again!

  • Everything has gone to shit, even more than usual. My achilles is effed up again, my landlady is taking all her frustrations out on me and making the house awkward and uncomfortable and the absolute icing on the cake - I got a letter from the DWP saying that due to a backlog they are more delayed with getting through claimants appeals and assessments and it looks like my finances won't be fixed soon and I'll be relying on help from mutual aid for longer. Which is pretty terrifying considering how not only I but many others who use mutual aid are finding responses dwindling and more difficult to come by. What is the point of living like this? I wish it was all over. I don't know just how bad my achilles actually is yet, it's inflamed, hot and painful but when it gets like this it tends to worsen for a while, so I don't yet know how debilitating it's going to be. I can't bear the thought of being trapped indoors for months again, it's absolutely devastating to mental health to be a prisoner unable to get out. Walking outside is one of the few things that makes life bearable. The only other thing I've got is music, I've always been a big fan of rock and metal and have taken refuge in it during problems, but when I fell into financial ruin I ended up having to sell most of my CDs (and got an absolute pittance for them, much less than they were worth). So now it's quietly listening with poor sound quality on youtube instead of putting headphones in and blasting it up. And god, the endless stress of finances. Why can't I just have a fatal heart attack or something?

    • Goodness that's a lot, comrade. Is the backlog letter saying they're pushing your benefit evaluation further out than the start of next year? I'm so sorry it's just been one thing after another with that, you really haven't caught any breaks. Hopefully your tendon flare up settles quickly, and doesn't keep you tied down for too long.

      • Yes, they're estimating an extra 6 months wait (though it could be before that). When, like now, this happens during an appeal, it makes life much more difficult. When it happens prior to a normal reassessment, it's good. If you're in receipt of your benefits and they add an extra length of time before reassessing you, it means you keep getting paid for that extra time. But if you're appealing and not being paid, it means extra time without money.

        Thanks for the moral support.

  • Haven't checked in lately because I'm been working a lot, and relying way too much on drugs and alcohol lately. I won't get into the drugs part so probably don't need spoiler tags. I do need to cut back on alcohol though.

    I get unsupervised visitation rights for my kids. But I suspect that is so my ex can go do whatever she now does in her free time. She's been lying to me about almost everything this whole divorce process and I'm probably gonna email her lawyer and add to the list of my "demands" that she stops lying. I'd rather hear a shitty truth than deal with her extremely bad attempts at lying, especially when it involves my kids.

    The band project is stuck in schedule hell right now but once we figure that out, we have a guitarist, drummer and now possible other bassist. If this bassist joins on, I'm considering switching to main vocals full time and helping with writing music while I continue to relearn bass. Turns out it's actually kind of like riding a bike. I'm working on alternate picking since it's something I never really got down when I played last. For the band's sound, I wanted to go with older hardcore punk but now I'm thinking about doing closer to early 2000's hardcore(Hopesfall, Poison the Well, On Broken Wings, The Number Twelve Looks Like You, etc. But I still want the politically charged themes. I'm working on lyrics for a few songs that focus on my own mental health, communist revolution, trans rights, and landback. I'm also working on my fry screams and I think I got them fairly nailed down at this point. I even have my own twist on them for a bit of flair lol.

    I think that's about it. I'm watching The Sopranos for the first time since I told my friend I'd give it a go. Also first time watching Boondocks. I'm enjoying both so far.

  • Hello fellow members of c/disabled. As mentioned in last weeks mega, the mods created a short "Information Post" about Ableist Language on the site and the consequences of using said language. Thank you to everyone who already offered up feedback and input in the last mega, we appreciate you taking the time to help make it better! We're looking forward to more input, should you have any, and will try to incorporate the feedback to the best of our ability. You can find the current state of the document under this link here. Make sure to delete the space between the two parts of the link before hitting enter: https://cryptpad.fr/doc/#/2/doc/edit/ XBOFfyoPSb0-l4vFySADdh+g/

  • Anyone have advice on how to deal with shame regarding not driving?

    I have horrible adhd and pretty significant damage from covid (thanks for being super unsafe and giving it to me 3 times, dad), and the combination makes me extremely inattentive, insane brain fog, can’t pay attention to all the signs, multiple mirrors, other drivers, lights, etc. that come with driving and I’ve just decided I shouldn’t drive because I don’t want other people to be harmed or have to pay money I don’t have for any damages that may happen.

    However at the same time I feel like there’s so much pressure and I won’t be fully free or adult without knowing how to drive. I’m 21 and super embarrassed even though I know it’s the logical and most wise course to take. I drive to and from work but I still have to get driven everywhere else by my mom or dad (usually my mom) and it’s kind of embarrassing, especially because people react so weird when I say I don’t drive as if driving isn’t a big deal and terrifying.

    I have very solid plans to move to one of the biggest cities in the US (2 hours from me) and I know I will never have to drive again but I’m still feeling a bit inferior.

    Sorry to ramble, I just tried to drive in semi busy conditions again and freaked out and had 2 rude drivers behind me throw me totally off. I just can’t keep up at all. My dad had to take over lol.

    • People can be really weird and judgmental to non-drivers. I remember one person on reddit calling me a loser because i don't drive. When I told them I literally can't drive because I'm partially sighted, they doubled down and insisted anyone who doesn't drive is a loser. Glad to know being disabled makes me a loser.

    • Driving is incredibly stressful, and if it weren't absolutely necessary I'd ditch it entirely! It's not a strange or weird thing to want to avoid it, nor does it make you any lesser of a person. Car brain worms run deep, but what's more important is your comfort and safety. As for dealing with the shame, I suppose it might help to reframe how you and others around you are approaching the topic. For you, driving doesn't make sense and isn't really a viable option for travel, and that's just fine. It seems a bit ableist and maybe even a bit classist to give looks or judge people on not driving everywhere. Not everyone can afford cars or physically meet requirements to get behind the wheel. If you're getting unwanted feedback or questions about why, it might help to have a quick response ready, like "my disability makes it difficult" or even "it's just not my thing" (when referring to driving). And no apologies needed, we're here to support one another as best we can.

    • I've been driving for 30 years now. I'll tell you this with absolute confidence - if I could move to a city where I wouldn't ever have to drive because I could bike and take public transport, I would do it in a HEARTBEAT. I cannot express to you how fucking miserable driving is down here. No one knows what they're doing and, even worse, no one knows where they're going! Covid caused all the frontal lobe damage to the drivers and they only make you renew your drivers license every 8 10 years here. I spend half my time on the road white knuckling it and yelling out my front windshield 'GREEN MEANS GO!' and "YOU'RE NOT SUPPOSED TO TRY TO RUN INTO ME' while furiously honking the horn so they'll realize that their gigantic piece of shit car isn't supposed to be doing what they're attempting to do.

      Not to mention, you have to pay for car insurance which is a small fortune.

      If anyone gives you shit about it just tell them to suck your dick. Or, if you're less confrontational about it, tell them you're "legally blind". Make up any old shit, who gives a fuck!

      As to feeling inferior, just remember that every single dumb motherfucker that you've ever met in your life has a drivers license and drives a car.

    • I'm sorry you have to deal with all that judgement. I'm avoiding driving too because I think it's terrifying and I regret ever getting a license. You're doing the right thing, acknowledging your limits and prioritizing safety, both yours and others. Remind yourself of that and keep telling people off who try to shame you for it. I also really hope that moving to the bigger city will help

  • Obviously this is a “no duh” for many autistic people here, but one of the many things holding autistic people back is their first mentors are sometimes their first naysayers.

    Many school faculty may have this belief even the best autistic student is still a waste to educate and their best case scenario is being tossed into a group home and maybe having a custodian volunteership for the rest of their lives. As a result, many autistic people literally have gaps in their skills they otherwise could have learned.

    I was going on with this with my therapist yesterday. I am still plenty capable of a person, but still unemployed. One of the reason is this lack of skills I developed because of these early mentors passively assuming I’ll just be a minimum wage worker on benefits for the rest of my life.

    And thus you see a lot of autistic people struggling when their suffering could have been avoided.

    • Well said. It's something that isn't acknowledged by many as a whole that causes so many problems, and not just for people with ASD. The inherent ableism of our established systems causes some sort of mental or physical anguish to disabled comrades in every facet of our lives, from employment to healthcare and beyond.

  • Guessing everyone remembers but autistic, for context

    A full time management position is opening up at work and I am both qualified and my manager's top pick. I really want this promotion, both for my resume and obv better pay. Not that good but an improvement either way.

    However I am very worried about the interview itself, it sounds like it might be done by some of upper management/hr and not my direct report which has me more nervous, I've made good impressions with them I believe but obviously I have to sell myself a lot more then my manager who already likes me enough to be her pick. I also haven't had such a position before so I'm nervous about what questions they might ask and how to respond. Also just being a manager, as someone who is ND. idk if anyone has any advice for me or anything like that I'd appreciate it, maybe I am just overthinking it. After figuring out that I am ND I just think about how that effects me and dynamics with NTs a lot.

    • Hey, first off congrats on being up for the promotion that's awesome! If you trust the manager who likes you and you're comfortable with it I'd say ask them for some interview advice. You can frame it as not having had to interview on that level before, or just being out of practice, and ask them why they like you for the position so you can hit those same talking points during the higher-ups interview. If you have access to the actual job posting you can prepare talking points about yourself that refer back to exactly what they're looking for. I was always told to keep answers short and concise, and include real-world or recent examples of times you handled certain challenges, but only when asked. It never hurts to look up common interview questions for [position].

      You got this! It's okay and natural to be nervous about this kind of thing. We believe in you, and good luck <3

  • Well my cold finally died down a bit and I just managed to get to see a dentist. After all the insane effort I went to to see one, firstly they didn't even bother checking the entitlement form that I'd gone to so much time and bother to get, and then they said there was nothing wrong with my teeth now anyway. I suppose that's good though. My migraines and bladder are flaring up though, maybe because I started taking my folate supplements again as the tingling in my legs is so bad.

    I also seem to be getting taken for a ride on lemmy again. Someone on there contacted me to say he was going to send me a food gift card. Then, as has happened multiple times from other people before, I got a message every day for the next few days with some excuse about why he hadn't been able to do it. Why do people do this? I should know by now that if someone contacts me saying they're going to help, they won't come through. If someone is actually going to help they just do it. The people who send messages saying they intend to help at some future time, never do. I know this and yet I still let myself feel relieved and excited about the promised help, I still rush online every day to check if it's come through, only to be disappointed that there is nothing on my inbox but an excuse or just silence. I still don't understand why people do this, what do they gain from it? It's even worse when they leave a post in your mutual aid request thread implying that they have helped you, so other people who might have helped don't bother, and then they don't come through and you get nothing. It is such an endless phenomenon. Thanks god one person responded to my post for real this month, I reckon I can stretch it out for a couple more weeks, otherwise i don't know what I would do right now.

    Oh and my landlady bullied me into helping her lift her xmas tree, despite the fact that my disabilities cause me to get severely injured when lifting things, we've argued about this before and I've just finished a course of shockwave therapy due to my last injuries. Anyway now my back and achilles tendon are hurt.

    • I'm glad your cold finally got better, it always sucks being sick, but especially when there's so much else going on.

      At least someone came through, but it's really frustrating that people keep promising something and then don't follow through. You deserve better.

      And fuck your landlady. I know she's a big help in many ways, but srsly, that's not okay.

      • Thank you.

        Yeah, there are lots of problems with living here, she has no respect for any type of boundaries. But still there's no real alternative except a homeless shelter or something, which would be awful. Just one of the many issues of capitalism, no money, no real choice of living situation.

  • i'm just going to give up and be a night owl from now on. it's so much easier to function at night because it's not as loud, and i seem to have a hyper-vigilance thing going on during the day where i can't relax at all

    • Sometimes we adapt to what works best for us, so why not try for a later schedule if it works for you! It's wild how much more quiet it gets at night, especially in the colder months. The stillness of it can't be beat compared to the day time. There's less expectation, less stress, and a calm that makes it so appealing. Hope you can find some more relaxation time soon.

  • I've got a terrible cold. Maybe covid, who knows? Had it for several days. I can't stop coughing, so much my throat and mouth taste like blood. I knew all those people in the supermarket coughing on everyone, not wearing masks, would do this.

    And I don't know if I'm in a suitable state to go to the dentist now, but that is still proving a difficulty anyway. I finally got my proof of entitlement to free dental, but now it's so hard getting an appointment. I spent two days trying to contact NHS 111 who deal with this and when I finally got through they said they don't deal with this in my area any more and gave me a different place to contact. When I finally managed to contact them they told me it was too late and to try again another day. Why is everything so difficult in this country?

    • I'm so sorry you're sick, comrade, I hope it's not covid and is just a cold you can heal from quickly. It has to be so frustrating not being able to book an appointment, especially with everything being a multi-step process. Sinus stuff can mess with tooth pain, hopefully it's not too uncomfortable for you in the interim. Stay warm and hydrated, love, I'm sure you'll get through it soon.

  • I am sitting here at 4am, procrastinating, because tomorrow I HAVE to pick my 2026 health insurance plan on the marketplace. I am absolutely terrified of what the prices will be. This year was $800 a month and $6,700 deductible. I know for a fact the premium has gone up by at least 20% but I don't know how crazy the deductible will get. Unfortunately, I pretty much need a PPO plan because the good doctors in the area only take them and NO ONE takes the HMO's. I can't be without insurance because of long covid and my 1,000,000 other health problems, but if its as bad as I think it will be, its going to break me. I haven't worked in a while and my savings are dwindling RAPIDLY. I can't get disability SSI because I don't have the tax history and I have more than $2,000 to my name, but disability is the only way to get onto Medicare which is the only way to escape this insurance nightmare.

    Why aren't there more Luigi's? I will never understand this as long as I live.

    • Why aren't there more Luigi's?

      Oh agreed, there need to be more. A lot more.

      I'm so sorry that this financial nightmare is looming above you. Healthcare should always be free, naturally, but these prices are second-hand anxiety inducing. I hope the deductible won't be as exorbitantly high, comrade, and that there is a way for you to get the care you need without going bankrupt. I'm keeping my fingers crossed for you

119 comments