I have always been fond of music, especially when I’m feeling down. Now, I don’t think there’s enough popular songs about disability and how we struggle each day. But I stumbled across a song the other day that, while it’s not about disability, I’ve been listening to quite often when I feel like I failed somehow. When all that’s happening is really just me struggling and making it through another day, for better or for worse, I like to remind myself that I am perfectly incomplete, but I am good the way I am. I hope that maybe it helps you too.
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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.
Hello fellow members of c/disabled. As already mentioned in a comment thread in this post, the mods created a short “Information Post” about Ableist Language on the site and the consequences of using said language. I would like for you to give us your input and feedback to the document. If you want anything to be included that feels like it’s missing, you can send me a DM on hexbear or comment under this comment. I would like to ask you all that the comments in this thread be kept short, as this is the megathread and I don’t want to clog it with too many administrative comments if possible. I will make sure to incorporate all feedback and input you have to the best of my ability. You can follow the changes through the document link: https://cryptpad.fr/doc/#/2/doc/edit/ XBOFfyoPSb0-l4vFySADdh+g/
Edit: I will be taking feedback in the next mega as well and post the link to the document again. Thank you again to everyone who already offered up feedback and input, I appreciate you taking the time to help make it better!
I would argue that in the example about use of medical terms used as insults, it might be worth mentioning that one of the reasons it is so problematic is because of the associated stigma and because it makes it out as if the reason a bad act is bad is because it is an act similar to someone who is ill. When you say someone who is doing evil has to be crazy, you are insinuating not only that the only reason to do bad is because you are sick, but also that disabled people are inherently connected to evil.
Thank you for the input! How do you like this as a modification?
…are ableist outside of a medically diagnosed context. [Calling someone who commits something evil a psychopath/sociopath/etc., or using a descriptive word like insane/crazy, assigns an inherent evil to anyone suffering from associated conditions. In doing so, all disabled people of these groups are immediately labeled as evil.] If someone is treating you cruelly, …
That sounds ok to me.
The document you’ve requested has an invalid URL.
ditto
Sorry, my bad, does it work now?
nyop
I changed the URL, does it work now?
Link has a space in it? It loads endlessly for me. removing the space or the " g/" part both give an invalid link
Try copying the spelled out link now, and delete the space between the two parts
yes, it works!
Gosh finally!
I still get the same erorr
Try copying the two parts of the link and delete the space between them
It would be very helpful if there was an explanation included for the mechanism that makes usage of the mentioned words ableist. I can not give a better explanation to this but a very simplified example would be:
Using the phrase ‘blinded by’ normalises the idea that blindness is a bad thing that should be avoided. Blind people should have the agency over the connotation of the word ‘blindness’ and not be influenced by our negative usage of it to think that their condition is inherently bad.
It would be cool if there was an academic source on this mechanism.
It’s a lot to ask of any community to spell out exactly why certain things are bad for them, but unfortunately it is often the only way to get people to actually consider what you’re asking of them.
I’ll try to find an academic source tomorrow if I can, otherwise I think your two sentences are good additions that I’ve put into the document. Thank you very much for your input!
Using the phrase ‘blinded by’ normalises the idea that blindness is a bad thing that should be avoided. Blind people should have the agency over the connotation of the word ‘blindness’ and not be influenced by our negative usage of it to think that their condition is inherently bad.
this is quite strange to me, all sighted people are temporarily blinded on a regular basis and often in physically unpleasant ways that we avoid when possible.
I think maybe we need to switch out “blinded by” with the example in the document “You’d have to be blind not to see it”, as we explained that “blinded by” is something that can be non-ableist in context, while the second example can’t be. Would that make it more understandable?
“The price of community is inconvenience” people when talking about endless loud music everywhere: 🤗
“The price of community is inconvenience” people when talking about wearing a mask when they leave their home: 🤬
That thread pmo so much, zero consideration for anyone ND who might need things a bit quieter. One person completely ignored that when it was pointed out, continued arguing on bad faith, and it was never removed (I reported). So many people saying “It doesnt hurt anyone (me)”
It is actually Not Very Communist of you to be irritated by unavoidable but preventable loudness. It is in fact Very Communist of me to spread the both avoidable and preventable plague. Learn the rules!
it was never removed
this is because the admins also generally support ableism as long as its popular to do so
every website sucks :p
I sometimes wonder how lacking in empathy people can be, but then I’m reminded that you need to learn empathy first and then need to give a shit about people around you continuously. It takes effort, and it seems a lot of people, including hexbears, don’t want to give a shit. It’s fucking sad.
Unfortunately very true
me watching people yell at disabled people for not going to protests:
so youll make them accessible right? youll wear masks right? right??
Every time I post something like this I scratch at least one other person. It’s kind of funny.
And then they just Anakin smile at you
I got my diagnosis today. Like I always feard, I have endometriosis and according to the images, it’s really bad. It’s not like I didn’t know that already, but having the diagnosis doesn’t give me any vindication. The biggest issue is that they told me that I will need to use hormonal therapy if they’re going to treat me, which means estrogen blockers or the pill. Having taken both before, I honestly think I’ll just stick with living in constant pain. The pain is excruciating and debilitates me for roughly a week each month, but knowing how I react to hormonal supplenents and blockers, I think I’d rather keep eating painkillers.
It just makes me so fucking sad and hopeless. A hysterectomy is off the table as well, as I’m “too young” (sexist bullshit argument) and it apparently has too many side effects (the pill doesn’t tho lmao).
hey apropos of nothing just here to remind you that i think youre amazing (and I’m not the only one)Thank you sweetie
Sorry the medics are being such utter c****s as always. I don’t blame you at all for not wanting to take that hormonal rubbish. I’m worried I’ll be in the same situation as you when my appointment finally comes and they’ll try and push drugs on me instead of a hysterectomy. What side effects did they say a hysterectomy has?
What side effects
well you see it means you cant have a baby, and we all know anybody with a uterus’ only purpose is as an incubator (societal commentary)
Ironically, this time they explicitly asked if I want kids and since I had my partner with me, we both firmly said no, never, so they immediately ruled out the treatment that is for incubators (which excludes hormonal therapy actually!)
The problem with a hysterectomy is that apparently, you still need to take hormonal drugs, especially if they remove the ovaries as well. The side effects without hormones are immediate menopause as well as bone density issues bc estrogen is needed to keep your bones intact and strong (alternative is testosterone). The side effects of a hysterectomy without removing the ovaries is, in my case, no end to the endometriosis, but apart from that, it also causes the bladder to dislocate quite often and the can make your innards fall forward and into unhealthy positions, which includes the colon and kidneys. It’s not something they like doing in general, as the pelvic floor seems to suffer the most and thus makes all the other issues happen.
Thank you for the shared rage, sweetie
I feel very much cheated, but then again, I knew treatment wise we aren’t at a point where I can get rid of endo without hormonal therapy.I didn’t know all that. I thought a hysterectomy would help my bladder issues but it sounds like it might make them worse!
Anyway sorry to hear you don’t have any good options. Medical science is still so primitive.
It can help as much as it can cause further damage, but the alternative is usually hormones, so… I don’t know if I’d recommend any of the options. I think it’s mostly a weighing of pros and cons. And depending on what you want to get rid off, removing the uterus may help, but I am no doctor, so this is just me speculating.
Especially when it is about female reproductive health
There are never any good options in life!
For what its worth, as a male, I once had a female partner who was told the same thing about the hysterectomy. When they went to different OB’s, they were told different opinions, and one said they’d do it. Might be very worth searching your area for other widely regarded OB’s to see if you can get another opinion.
Thank you
I can certainly try that, but it won’t solve the underlying issue of endometriosis unfortunately. There’s certainly someone who’s willing to do a hysterectomy, but ultimately, I don’t think it’ll help with the disease. I want the blasted thing gone obviously but I do need hormones. Heard someone once say that transitioning was what saved them from endo, and I’m a bit jealous that I’m not trans. Would make this a lot easier 🥺
Yes she had tried many alternatives, and knew she didn’t want kids, so she opted for the full roto-rooter treatment. Her quality of life improved dramatically. Obviously, this is person specific, but what I’ve learned above all else, through my MANY different doctors treating me for obscure injuries and long covid, is that most doctors are complete and total assholes that have no idea how to think outside of a straight line diagnosis.
Amen to that
What do you MEAN healing isn’t linear?
Anyway the season 6 premier of House is about how fucked up psych institutions are, which is funny coming from the show that is overwhelmingly pro-medical abuse. The lesson is “always let doctors do what they want because they’re better and smarter than you.”
Hey that’s not true, sometimes the lesson is also that you deserve your fate if you don’t fit within accepted societal norms!
i swear every time i log into this hellhole i get hit with 12d4 psychic damage
can people please stop being complete utter assholes for fuck sake its not that hard
message to the admins (who will never read this)
fuck you!!! moderate fucking ableism on your damn website for fuck sake. i know reading comprehension is at an all time low but come on is it really that difficult? i know you dont care, and that it doesnt effect or actually matter to you, but can you at least pretend that you give a shit?
First things first, whenever you enter the disabled mega, I want you to know I’m casting Prayer of Healing and you always regain maximum hitpoints. No psychic damage shall be sustained or held here.
Second, I agree with you, and I will hopefully soon get to the ableist language post I promised to make, once my own issues don’t distract me so much anymore 😥 feel really bad for not getting to it sooner
you shouldnt have to make that post though. you shouldnt have to open yourself up to harassment and ridicule, and be forced to defend yourself against people that hate you. you shouldnt feel bad for not having the spoons as a disabled person to put up with other peoples bullshit, or make an effortpost about something that already exists and is just not enforced because they dont care.
I know
And yet, in the face of overwhelming negative reaction to the topic of ableist language, I still believe we should make these posts. For lack of a better explanation, I just refuse to give up. I finally managed to write a raw draft and am discussing it with the other disabled mods at the moment. Once we are okay with it, I will put up a link here for you all to check it out and give feedback, so we can modify it and make a post that represents our common stand on the topic of ableist language.
i mean the problem goes beyond just “ableist language”. its about so many people being anti-accessibility for disabled people because any amount of small “inconvenience” for them is a bad thing. because thats all disabled people are to them. an inconvenience. their fundamental views are the problem.
I have thought about this vis a vis COVID, like how there used to be a vegantheoryclub forum or whatever where they just straight up did not tolerate this kinda thing, say some carnist shit and you get the boot. Needs to be something for ableism. Say some foolish anti- shit, get banned. No debate. I am tired of the concessions. I am tired of mingling with these people like we are cool. We are not cool.
this is part of the hexbear (and most instances) tos its just not enforced because (as we said) they dont actually care
you are right, though
and given administration ranges from indifference to active encouragement, standing up on stage and going “please stop being assholes” isnt gonna change anything
The alternative is to not say anything and let it slide, but that will not make anything better for sure. I think we need to keep trying, and while I don’t want to expect that from everyone in the comm, I feel as a mod I have an obligation to keep trying (whenever I can, obviously not all the time, I’m also just one person with disabilities).
Edit: And you are correct, it does go beyond language a lot, but language is the first barrier to cross to make a place either accommodating or a shit hole. I’d like to start with language, question how it’s used, and then encourage people to think about why they’re saying things the way they do and maybe improve on the reasons behind that and the language at the same time.
hot take but making fun of fascists (that dont even wear them) for wearing diapers is actually like ableist as fuck
i know its like incomprehensible to some people but there is infact a very large group of people who need continence aids just to exist! lets stop shaming people for daring to have what you consider “unsavory” disabilities
its wild to me that people cant say how terrible someone is without resorting to fatphobia/ableism/other bigotry, and of those people 99.999% of them will be like “no its okay because they suck” when they get called out
stares at the charlie kirk emoji coldly
i thought that was a mormon magic underwear thing
I thought it was also a baby’s legs on the emoji bc it was supposed to infantilize him, not mock him for incontinence.
1: extremely bad faith argument, disappointing
2: infantilizing someone for wearing diapers is still ableist
3: its to mock him for wearing diapers, just look at how its used across the site
I’m not defending the emoji, I think it’s a weird emoji and I’m describing what I thought it was supposed to convey, as baby feet and a diaper in conjunction seemed like it was supposed to indicate he was infantile. I don’t think it’s a good way of portraying a fascist; adding a Hitler beard is really simpler and more effective imo. Also, I haven’t seen anyone use the emoji bc I’m barely active outside the disabled comm, so I don’t know how other users use it. I’m sorry I offended you, that was really not the reason for my post, and I’m also sorry for making it seem like I don’t care. That was not my intention, and I apologize
i swear almost all of my migraines these days come from getting too close to cishet men. if they used 1/10th as much body wash as they do body spray my life would be so much better; as it is like 60% of the cis men i encounter reek so heavily of axe or whatever that i can’t get within 30 feet of them without it ruining my entire day
this complaint brought to you by this exact situation happening twenty minutes ago
Agreed, if you leave a cloud of scent after yourself it’s too much! But it is so common for people to douse themselves in the stuff.
IME, everyone, male and female, wears an unholy amount of perfume. It’s so bad I have to carry migraine tablets with me everywhere I go.
I’m getting violent flashbacks to some of these clouds I walked into, and I don’t even get headaches or migraines from it. Sorry you had so many reeky people around you, I hope you won’t encounter any more anytime soon
I have a volunteer shift AND a work shift AND a meeting tomorrow. lmao I schedule so well, im so good at schedules.
You managed to get all the schedule in one day! That’s impressive (and worrisome, please make sure you take breaks whenever you can)
I didn’t mean to. It just happened.
Someone got drunk and vomited next to my door, so now I’m going to wash my door/wall at midnight. Fuck my entire life man.
You are doing your best
spoiler
I really hope you can get out of this triggering situation soon, it’s a nightmare to live in constant fear of these triggers and be eternally on edge. Even if it’s not much, I’m with you in spirit.
Thanks, I appreciate it
I don’t know how to have a conversation that leaves me socially satisfied at the end and I have no idea why or what I can do better
Sorry it’s causing you distress trying to communicate, comrade. It’s not an easy task trying to express yourself and make connections, and being on the spectrum makes it so much more difficult to navigate. It’s okay to not be sure of what you want or need. Sometimes those needs end up changing over time as we grow and learn, so it’s not a bad thing to be figuring things out. Hope you have a better day today.
Feel hugged sweetie, that’s a horrible feeling
Is there something you’re looking for in particular? Like “wholesome chitchat” or “warm, kind conversation”? Or is it more specific like “I need X to listen so I can get something off my chest”?
- thank you
I don’t know, its hard to explain. I guess a lot of the times I talk with someone it feels short, like I wanted to talk longer. But I don’t necessarily always know exactly what I want to talk about, or keep it going, and I also don’t know if I want to just ramble/talk at someone either. A lot of the time its a kind of generic wanting to talk about trans related things but I don’t really know what to say. And even that outside of that a lot of the times it just feels like, “cut short”, even if the conversation reached a “natural” place to stop.
Any time
I understand that, it sounds like there’s so much more to say but no real way of making it happen. I don’t know how many people you have that you can be very candid with, but maybe try and pick one of them and tell them about this feeling of “wanting to say more”. From personal experience, I think practicing with individual people you trust helps a lot to figure out the how and what you want to say. That said, sometimes the best way to make a conversation go longer is to let silence linger. Not forever, mind you, but sometimes it really helps to stay quiet in a conversation, and your brain will eventually come up with something to say. You can always take it from there too. Hope some of this helps <3
Why would a doctor think negging is an acceptable strategy. I don’t care if its the eighteenth time they’re here for the same issue.
Rant over. On to the meeting.
i got approved for one of the disability aid programs in my country
it’s not the main one, but it’s nice to get some assistance finallyYipeeh!!!
Congrats, Spectre, I’m very happy for you!
So glad you’re getting some help!
I do NOT want to work for someone else anymore. I want to set my own schedule and use my own methods. I’m going to try to make this happen
More power to you
