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[-] Iraglassceiling@hexbear.net 64 points 11 months ago

I think spoonie culture is a little cringe but wtf are you doing appropriating the language of chronic illness to describe your entitled colonizer mindset? Fuck off.

[-] Huldra@hexbear.net 61 points 11 months ago

It's literally not even like the context you use that shit in, you have like too few spoons to be able to wash up after dinner or shit like that, if you are spending spoons on literally just passive sympathy for a political struggle then you're operating in a new dimension of cutlery theory.

[-] Iraglassceiling@hexbear.net 23 points 11 months ago

cutlery theory

I’m crying

[-] Aryuproudomenowdaddy@hexbear.net 50 points 11 months ago

I once had a Zionist on ![reddit-logo](https://www.hexbear.net/pictrs/image/4aac8007-876f-4c7f-936d-b7eabf506ef4.png "emoji reddit-logo") start using leftist terms and tell me I had no right to criticize anything Isntreal did from the imperial core.

[-] ShimmeringKoi@hexbear.net 36 points 11 months ago* (last edited 11 months ago)

Lol what, it's a military outpost of the imperial core and I'm a core dweller, I am well within my rights to criticize the horror I am forced to help subsidize.

[-] Aryuproudomenowdaddy@hexbear.net 22 points 11 months ago* (last edited 11 months ago)

Seems like it was along the same vein as their PR push as Zionist vegans that are very progressive and cool and need to be protected from the Islamic hordes.

[-] autismdragon@hexbear.net 19 points 11 months ago

I think spoonie culture is a little cringe

Why?

[-] Iraglassceiling@hexbear.net 14 points 11 months ago

I feel like when the idea was first introduced it was a helpful metaphor, but now it’s a weird token of victimhood? As a person active in the CI community when I meet someone who self identifies as a spoonie I roll my eyes and prepare to be exhausted.

[-] autismdragon@hexbear.net 17 points 11 months ago
[-] Iraglassceiling@hexbear.net 13 points 11 months ago

Ok, what I’m talking about is people who engage in illness Olympics and endless one-upsmanship because their symptoms are their identity. I am allowed to be exhausted by people who belittle my experience as a chronically ill person with a multidimensional life.

[-] autismdragon@hexbear.net 18 points 11 months ago

Can you explain how your experience is belittled? I don't understand that.

[-] Iraglassceiling@hexbear.net 11 points 11 months ago

Person first language examples and why to use them

I understand that not everyone practices person first language, but I personally find it to be preferable to making my illness equivalent to my personhood.

[-] autismdragon@hexbear.net 18 points 11 months ago

Ah, ok. Well I personally consider my autism central to who I am as a person, and wrapped up in every aspect of who I am. Its why I dont want a cure, because it would make me a fundamentally different person. A cure would be murder. So I don't like detaching autism from myself like that. But I see what you mean, I at least understand where you're coming from now.

I guess for me I see a difference between someone who "identifies as as spoonie" (which seems silly) and someone who uses spoon theory to describe their situation (which I think any disabled person can do).

[-] quarrk@hexbear.net 6 points 11 months ago

I can see where each of you is coming from. I suppose the lesson is that the person ought to be the one deciding how much their identity is bound up with their condition? For example, many people develop mental illness later in life, so it feels more like an acute affliction rather than something they were born with.

[-] WithoutFurtherRelay@hexbear.net 5 points 11 months ago* (last edited 11 months ago)

Autism isn’t really a mental illness. I mean, you can call it one, but it exists since the moment you’re born. It’s a fundamental difference in the neural makeup of the person who has it. People should be called whatever they want, yes.

[-] quarrk@hexbear.net 7 points 11 months ago* (last edited 11 months ago)

To be clear I wasn't calling autism a mental illness, although reading back it's a little confusing due to the wording. The dialogue above was between one person who is autistic and another person who has a mental illness, both which I categorized as conditions (I suppose if we're splitting hairs maybe this word could be problematic, but I think you get my point) which one may identify with to a greater or lesser extent ("being" versus "having").

In the above discussion it is apparent that there is no universally correct attitude to have for everyone, i.e. it's not correct to assume that every autistic person wants to identify with their autism the way @autismdragon@hexbear.net does, so my point was to give space for that person to decide, rather than for others to decide for them whether they "are" autistic or they "have" autism. Otherwise you run the risk of either belittling the person by identifying them with their condition when they feel separate from it, or belittling their experience by implying the real person is being suppressed by a condition which that person in fact strongly identifies with.

[-] Iraglassceiling@hexbear.net 5 points 11 months ago

I don’t have a mental illness, I have a physical illness that causes me a lot of pain. I think the confusion here is partly my fault for not saying so at the outset.

I clearly have weird hang ups about it all. I can’t pretend I’m “right” to cringe at spoonies but they do make me uncomfy for the reasons I tried to outlined.

[-] GreenTeaRedFlag@hexbear.net 4 points 11 months ago

Yeah I have to agree with your takes here. I also don't get the point of the spoon metaphor period because you could just express it as like, batteries or change or something instead of introducing a random other item which has no bearing on energy or task completion.

[-] Iraglassceiling@hexbear.net 1 points 11 months ago

When your illness starts being more performance than illness it’s time to take a step back and ask if you’re performing for yourself or for someone else. And why.

[-] Iraglassceiling@hexbear.net 4 points 11 months ago* (last edited 11 months ago)

I just want to jump back in and clear up something: I am not talking about autism. I don’t honestly feel that the term spoonie as it originally was developed applies to people with autism/autistics, I always understood it to be a measure of physical illness. (If you want to use it for your neurodiversity you are welcome to do so, but then you’re not who I’m talking about when I talk about spoonies.)

I am in constant physical pain. There is no social model for my disability. I am in agony.

Also yes 100% to your second paragraph, exactly that.

[-] WithoutFurtherRelay@hexbear.net 12 points 11 months ago

Your experiences are valid and how you want to be referred to is valid, but a lot of autistic people prefer to be called autistic people because it is part of our personhood and even the idea that we are being too attached to it as part of our identities is silly. It’s literally how we operate as people. It is fundamental my neural topology.

[-] Iraglassceiling@hexbear.net 6 points 11 months ago* (last edited 11 months ago)

Weird wefwef error

[-] WithoutFurtherRelay@hexbear.net 14 points 11 months ago* (last edited 11 months ago)

I have never heard of anyone describe themselves as a “spoonie” but now that I have heard of it I give them all uncritical support and, this comment reeks of a Redditor assimilationist approach to neurodivergency. Your feelings around your own neurodivergency are your own and you have a right to them, but acting like people who are embracing lifestyles that are compatible with their brain are cringe or “annoying” is fucking infuriating. Don’t do that. Please.

Edit: I apologize for how rude that was. I am emotional and tired.

[-] Iraglassceiling@hexbear.net 9 points 11 months ago

You were rude to assume that I am making any statements about neurodivergency at all.

Spoonie was originally a term to describe physical illness.

I am in constant physical pain.

That is not the same as being autistic. There is no social model for my disability. I am in agony.

I am enraged that you make false statements about my illness.

[-] WithoutFurtherRelay@hexbear.net 6 points 11 months ago* (last edited 11 months ago)

But it’s used by neurodivergent people often which is why I made the conflation, though granted, on accident. I am sorry.

[-] Barabas@hexbear.net 2 points 11 months ago

Yeah, I've heard it used only by my partner who has CFS, didn't know it was used as a neurodivergent thing too now.

[-] AOCapitulator@hexbear.net 5 points 11 months ago

Yeah that comment had a rancid vibe

[-] RyanGosling@hexbear.net 10 points 11 months ago

![jesse-wtf](https://www.hexbear.net/pictrs/image/f4eec943-179c-4416-a166-ed40dd07701d.png "emoji jesse-wtf") the what culture? what the hell is anyone talking about here and why is no one else confused

[-] WithoutFurtherRelay@hexbear.net 9 points 11 months ago* (last edited 11 months ago)

Spoon = unit of measurement used to describe amount of energy someone is capable of giving to a task
Spoonie = (I assumed) someone who uses spoons as terminology to describe how much energy they have

[-] WithoutFurtherRelay@hexbear.net 8 points 11 months ago* (last edited 11 months ago)

“Spoonie” specifically appears to have been started as a group of young women on websites such as TikTok describing their symptoms with what sounds a lot like chronic fatigue. The commenter is seemingly complaining about this group and views them as self-victimizing. I cannot guarantee that this is what the commenter actually meant, but it makes sense given what we know.

People who talk and complain about TikTok “disability fakers” emit extremely horrid vibes to me so I do not want to say anything more. I do not have anything positive to say.

[-] Iraglassceiling@hexbear.net 1 points 11 months ago

You are mistaken about the origin of the term. Vigilantes are gross, but malingerers also do real, tangible harm to people who have to contend with the medical system and the term “spoonie” is certainly overused by a certain kind of bad faith actor in the CI community.

[-] WithoutFurtherRelay@hexbear.net 2 points 11 months ago* (last edited 11 months ago)

if they're going to extreme lengths (such as getting ports or custom wheelchairs or service dogs) just for attention maybe they really need attention. Clearly something is wrong in their lives and they could be doing much worse things. Why is asking for attention, positive feedback, and peer acceptance such a bad thing?

  • Paraphrased Reddit comment

Do you really think the statistically minimal group of people pretending to have illnesses are what is preventing people from getting medical care? The medical industry would refuse service anyways. Insurance has a direct incentive to think that people are malingerers by default. The general attitudes from doctors when it comes to chronic conditions is disbelief and gaslighting. If it wasn’t malingerers, it would be something else. The ableism in the industry is the issue, not random people it uses as scapegoats.

Hell, think of the term “malingerers”. People who pretend illness to get out of work. Is this not just a repeat of the usual, ![porky-point](https://hexbear.net/pictrs/image/fd79f70f-d548-4165-8974-98ca77b62351.png "emoji porky-point") complaint about lazy workers? Children, maybe not. Faking sickness to avoid school is a common trope for a reason. But do you really think adults who are being accused of faking illness are “malingerers”? If they need to fake illness to get out of work, and in the process lose a chance to get money, then they probably aren’t able to work in the first place. Healthy, neurotypical, able-bodied people don’t just pass up working opportunities for no reason. Even if it’s for attention, same issue. Healthy, able-bodied, neurotypical people don’t just spend thousands of dollars on surgeries and equipment and accommodations just to get attention. Healthy, able-bodied, neuro-typical people don’t need attention that much. There is clearly something going on there and whatever it is probably isn’t going to be prevented by some random strangers calling them fakers on the internet.

I know you have your own experiences that I could never even imagine when it comes to chronic illness, and I am mostly talking from a place of privilege. But I have been in the autistic community, which has similar issues with accusations of fakery, and it seems directly transferable to me. There is a reason that the autistic community has nearly universally agreed that self-diagnosis is valid. There is a reason that there are multiple complaints about “fake disorder cringe” subreddits on the Autism sub. There is a reason that “fake disorder cringe” was posted to r/againsthatesubreddits (and, by the way, was only prevented from getting a bad reputation because the actual Reddit site admins themselves came down from the heavens to protect ableism).

Accusing others of faking disorders is, at best, punching sideways. In situations where it is punching up, it’s pretty obvious that it’s punching up. Usually because it’s a rich person doing it.

I want to clarify that this is not about your emotions. Being frustrated at people for faking disorders is reasonable. You are experiencing hurt and, in a way, they have contributed to it. But consider the situation of a worker in a unionized workplace- It’s very similar. Yeah, it is frustrating that you aren’t getting your pay, and I sympathize with that, but the best way to get it is to join the union, not scab.

[-] iie@hexbear.net 6 points 11 months ago* (last edited 11 months ago)

iirc the "spoons" thing started with (or was popularized by?) a youtube video about mental health, which used an analogy where you start the day with a set number of spoons, and the spoons represent how much mental energy you have to accomplish tasks. During the day, you spend your spoons in various situations, potentially running out of spoons if you overexert yourself. Conditions like depression are said to reduce the number of spoons you start the day with. The analogy helps some people to not beat themselves up for struggling to get through the day.

[-] GriffithDidNothingWrong@hexbear.net 6 points 11 months ago* (last edited 11 months ago)

I just read up on it and its fine if it helps people, but why spoons? It seems to be that anyone so dense they can't grasp that day to day activities tax your limited reserves probably wouldn't grasp your weird spoon analogy. Why not use fuel or batteries or money or something else that people would understand as a limited resource necessary for operation?

[-] machiabelly@hexbear.net 6 points 11 months ago* (last edited 11 months ago)

because the person who thought of it was eating lunch with a friend. They just used what they had on hand to make the point. I think its part of the reason why people use the term. Its cute. It could be more descriptive. But, when talking about sensitive subjects people like a bit of levity. The spoons add that.

[-] GriffithDidNothingWrong@hexbear.net 5 points 11 months ago

I read the story and I can see how it can help people conceptualize their struggles. I guess i just question the utility. If someone doesn't understand that the pain you feel or lack of energy or whatever often leaves you unable to do everything you want to do, they don't lack comprehension they lack empathy. The spoons thing seems more like its performative theatre for people who already get it. Which is fine, of course, it just sets my teeth on edge a bit for reasons I can't really explain. Thank you for clarifying though

[-] machiabelly@hexbear.net 3 points 11 months ago* (last edited 11 months ago)

Yeah of course. I think it gives you gsa queer or flag wearing queer at pride energy. Like people are going to think its too much. Or too unserious to respect.

Of course, I dont think that but its understandable that it would bring that up.

[-] iie@hexbear.net 4 points 11 months ago

I have no idea

[-] TheDialectic@hexbear.net 4 points 11 months ago* (last edited 11 months ago)

Cause putting it in videogame terms isn't gonna work on normal people. If some one put a hand to their head and said OOM. Us internet poisoned people would get it but we aren't the target audience

[-] Commiejones@hexbear.net 2 points 11 months ago

I think its like "Spoon fulls" maybe?

[-] RyanGosling@hexbear.net 1 points 11 months ago* (last edited 11 months ago)

This sounds likes something from the 1850s. I feel like using a battery analogy would be more intuitive in the modern day. To me anyway, feeling uncharged throughout the day makes more sense than "running out of spoons"

this post was submitted on 07 Oct 2023
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