shamelessly_mkp: (Default)
[personal profile] shamelessly_mkp







i get asks from time to time from people upset they can’t claim spoon theory to describe themselves, from people who say “able bodied people still have spoons, just a lot more of them than someone with an illness”.

i’m going to have to stop you right there, folks — spoon theory was CREATED to describe chronic illness. its origin and reason for existence is to give people with chronic ailments the ability to articulate their energy levels at any given time. 

reserving spoon theory for people with chronic illnesses is not othering able bodied people. it is empowering people with disabilities. the empowerment of a marginalized group does not mean to automatic demotion of a privileged one. 

healthy people don’t need spoon theory. healthy people get tired, yes. of course everyone runs out of energy eventually, yes. of course everyone needs rest, yes. but that struggle is not synonymous to someone whose life is defined by difficult choices, someone whose disease means choosing between cooking lunch and taking a shower, or whose flare-ups make it impossible to complete certain tasks. 

some things are simply not yours to claim. some terms belong to certain groups, because they were created specifically for that group to be used by that group, often in order to communicate their specific situation to someone who wouldn’t understand from the outside. be respectful. don’t take it personally. be compassionate to people dealing with chronic illness and disabilities and mental illness. it is the right thing to do. 

I guess it is fair to say healthy people have spoons too, especially when setting up the metaphor to explain it to someone, but it’s kinda like they have an infinite bag of spoons, and chronic illness or disability means you have a limited handful of them.

exactly. a good response to an abeled person claiming the spoon theory for themselves would be to really interrogate them about how many spoons they think they have and how much each daily activity takes out of them. ask if they have to think carefully about whether to shower or exercise each day because they can only do one. ask if they’ll run out of spoons for the rest of the week if they take the time and energy out to, for example, explain abelism to someone. ask if they spend a great deal of their time counting their spoons and wondering how to parse them out in the most effective ways. ask if they’re constantly terrified they’ll run out of spoons altogether. ask if they have to borrow spoons from the future in order to make it to a doctor’s appointment or to get groceries - even if that’s the only thing they had to do that day. ask if their lives revolve around securing enough spoons for basic self-care activities because that’s all they have available. ask if they know what it’s like to know that there is no way to produce more spoons by, say, taking a quick nap or having a cup of coffee because those things are more likely to make them feel worse than better.

That would be an interesting line of inquiry. Have you tried the experiment of actually asking abled people about this? Because I’ve consistently found that most of them actually do have experiences which make this experience comprehensible to them. And they have fewer of those experiences, or they have more spoons available, but they are still having similar experiences.

better yet: ask them if they require terminology like the spoon theory in order to talk to other people about their lives in ways they might understand. ask if there is anything about the spoon theory that works better for them in talking about having enough energy to get through the day that they simply can’t get across in any other way. ask why they feel it so necessary to appropriate a term that has helped those with chronic illnesses, mental illnesses, and other disabilities to form community with one another and to bridge gaps of communication with their loved ones instead of merely saying “wow, I’m tired today.”

Again, have you tried asking them? I’ve found that many people find this terminology useful to express a thing which happens to them, and that having that terminology for their experiences helps them understand what I’m talking about a lot better.

ask them why we can’t have just this one little thing for ourselves.

… Because that’s not how language works?

Language is for communicating. Spoon theory is only a useful tool for communicating when everyone’s allowed to use the same words for the same things. Otherwise it turns into a status game rather than a communicative tool.

Basically, I don’t think they’re appropriating it, and so far as I can tell, the person who coined the term didn’t think so either, since she talked about how her friends and family were now also using this terminology. I think this is just plain silly. Humans, all of them, have such limitations. That some people rarely have to think about them doesn’t mean they never have to think about them, and having that terminology in place can help them understand the relationship between what life is like for them on rare and bad occasions, and what some of their friends are dealing with as ordinary daily life.

Your reply seems to imply that I don’t actually know abeled people or interact with them on this subject, and that’s not the case.

That was the inference I drew from you suggesting that people ask those questions. Because I have actually discussed those issues with abled people and the results I’ve gotten have consistently supported my view that it’s much more effective for everyone if we all use the language to refer to similar experiences.

The abeled folk in my life, of course, have days when they are more tired than others or times when they have less energy than they’re used to or find themselves in situations where they are more limited than the norm. But that still isn’t the same thing as spoons. It isn’t the same thing as having your entire life revolve around constantly having to think about what your limitations are at any given moment. It isn’t the same thing as knowing that you have a very limited supply of “can” and if you use that supply on anything beyond basic self-care and survival then you’ll have even less ability for a long stretch of time. It isn’t the same thing as not being able to produce more energy from the reserve - because spoonies don’t have a reserve to begin with.

That the reserve is nearly always empty doesn’t mean there isn’t one. I mean, seriously, most of the people I know are too disabled to successfully have jobs, I am aware of how this works, but I do not accept the claim that this is a completely and unrecognizably different category of experience.

I do agree with you that language is for communicating.

Where I disagree with you is on the point that “Spoon theory is only a useful tool for communicating when everyone’s allowed to use the same words for the same things.”

I think the spoon theory is only a useful tool for communicating when it’s being used to communicate a specific thing - a thing that disabled and chronically ill people experience that healthy and abeled people do not.

Right, but I don’t believe there’s any such thing. “Disabled” is not an all-or-nothing question. Some disabled people have pretty good reserves and only run out of spoons some of the time. Other disabled people are virtually always out of spoons. They are still experiencing the same thing. Long-term illness can produce the same effect, even if it eventually clears up. And so on.

Of course abeled people can use the term! It’s a very helpful term for when they want to communicate with their disabled loved ones (“how many spoons do you have left today dear?”) or to talk about their disabled friends to other people (“well she couldn’t make it today because she just didn’t have the spoons”), etc.

It’s when abeled people use it to describe themselves that it becomes problematic, imo. Because it lessens the meaning. It makes it something else.

Not true, any more than it’s “something else” when people use the word “pain” to talk about things that are not as severe as severe chronic pain. Difference of magnitude doesn’t make something into something entirely different.

There’s already a very large vocabulary available for healthy abeled people to talk about dips in energy or temporary limitations (I’m tired, I’m low on energy, I don’t feel good, I’m weak, I’m out of fuel, I’ve been burning the candle at both ends, I’m out of cope, I can’t, I’m incapable, I’m lethargic, I feel lifeless, I’m drained, I’m beat, I’m consumed, I’ve been working too hard, I’m fatigued, I’m sleepy, I’m faint, I’m worn, I’m wasted, I’m spent, I’m overtaxed, I’m overburdened, I’m broken, I’m burned out, I’m sick and tired, I feel like death, I’m inadequate, I shouldn’t be let out of the house, I feel like shit, I feel like hell, I’m double dog tired, I need a nap, etc.).

When someone with a chronic illness, mental illness, neurodiversity, etc. uses these same terms - they are generally understood to be about the same thing. Someone with fibromyalgia saying they are tired gets met with “yea me too” from an abeled friend. Someone with depression who says they feel weak and out of cope today gets in reply “oh I know that feel” from someone who has no earthly idea what it’s like to have depression. Someone on the autism spectrum disorder who says that they’re overtaxed meets with a “you don’t even know the half of it” from their abeled family member who just doesn’t get it.

"On the autism spectrum disorder" is a fascinating new way of describing that. And the thing is… See, yes, sometimes the people saying this stuff just don’t get it. But spoon language has consistently made that better, rather than worse, in my experience. Sure, sometimes people misunderstand and say they’re "out of spoons" when they mean something else. But they do that with all the other terminology, too. Heck, I am pretty sure many of the disabled people I know use "out of spoons" sometimes to refer to something that is technically something else.

And then the spoon theory came along and spread out around the disability community. And it was this thing, this terminology that explained through metaphor and story what it’s like, why it’s different, and how it feels. Communities built up around the spoon theory. Chronically ill folks cried while telling people that finally their family members understood. Disabled people finally had a nifty short-hand to talk to one another about their limitations. Folks with mental illness finally had a way to talk to their mentally well friends in a way that made sense to them.

And then abeled people started using the phrase for themselves. To talk about being tired, worn out, out of cope…. and it started to lose that meaning again. It became yet another word that abeled people could use and be understood and disabled people could use and be … misunderstood.

See, I don’t buy this narrative at all. I don’t think people magically understood the term correctly without misunderstandings before, and then suddenly stopped, because the very earliest encounters I had with this term all involved some mix of abled and disabled people using it.

THAT is why this is important to me. Because I need for there to be a way for me and other disabled and sick folk to be able to talk about our struggles in ways that don’t end up being yet another thing that is just synonymous with “meh” or “tired”. Because when I told people I was tired - before the spoon theory - they did not understand what I meant. And now, when I say “I am out of spoons” - they do! They do understand! But if it continues to spread and become just another word for “energy” or “ability” then it becomes yet another word that is meaningless to me and my community. 

What you are doing is exactly how you make the wrong thing happen, though!

If you want it to have a specific meaning, you have to focus on the meaning, not the person.

If you want to argue that there’s a special class of resource shortage which can only be had by people with chronic illnesses or disabilities, but which can never occur, not ever, not even once in all of humanity, in any temporary illness, you are going to have to do major large-scale scientific studies to support that claim.

Keep in mind, NMR’s claims have included a claim that it is always wrong to use spoon language to describe any temporary illness.

So. Imagine that someone has a chronic illness, as a result of which they are validly able to use spoon language. Their experience is the one you’re talking about.

Now someone comes up with a cure for that chronic illness. This person is cured. Suddenly, not only are they no longer permitted, they were lying all along, because if the illness is temporary, they never had the experience you describe.

… That’s ridiculous. It’s complete nonsense.

Conclusion: The experience is not really completely different between chronic and merely longer-term illness. And once you start comparing the actual experiences people have, it turns out that being out-of-spoons is a thing that is essentially universal to human experience, but it happens a lot more to some people than others.

Yes, language spreads and morphs over time and yes it’s a helpful tool for communication. And that is EXACTLY why it’s important to me to spread the message that the spoon imagery and terminology is just not for you if you’re abeled and well and neurotypical.

This is a really bad idea, because that requires us to reframe the language so it’s not referring to the actual experiences people have, but to the extra information that those experiences are expected to continue. Which means we’re no longer talking about the actual specific experience, and we’re no longer able to actually communicate what we are talking about, because we’re intentionally telling people it’s not what it is.

And no, I’m not policing other people’s disabilities. If you tell me that the spoon theory applies to you, I will believe you. I’m not going to jump down anyone’s throat for using it. I’m just asking. I’m just asking my abeled friends and acquaintances not to do it themselves.

If everyone agrees, then you’ve done a horrible thing because you’ve made it impossible for anyone to use spoon theory without outing themselves, which they may not wish to do. If not everyone agrees, you’ve created miscommunications and hurt feelings by causing different people to have conflicting beliefs on whether the usage is appropriate. Either way, this kind of language exclusivity is a very bad idea and hurts everyone involved.

Reblogged for the takedown. Almost every marginalized group I’m in has people who insist that nobody could possibly understand our experiences and therefore declares that any attempts to understand, empathize and compare is minimization and must be stopped. This naturally makes “impossible to understand” a self-fulfilling prophesy.

People misunderstanding and minimizing is bad and causes huge problems. But the sort of absolute othering that this attitude teaches people to do creates other problems, often bigger ones. If my friends make an annoying comparison of my disability to their minor inconvenience, it can upset me, start fights and hamper communication, as well as making them less motivated to help or accommodate me. If people believe that a fundamental part of my experience is simply incomprehensible to them because it’s so qualitatively different, then they are unlikely to form a meaningful friendship with me in the first place.

Spoons is a useful concept that is more a part of disabled people’s lives than abled people’s. But it’s a useful concept and the more people who regularly use it the more people will understand it.


Everyone has their breaking point. and maybe able-bodied neurotypical people have way way more spoons than those not, but they don’t actually have infinite spoons; it’s not possible.
the difference is, I think, what a spoon actually costs.
going through a rough divorce? probably could eat up some spoons. suddenly being responsible for the work of three people instead of just one? also might take spoons.
in some ways, I think it’s even more useful as a metaphor if people apply it like this, because then when I say, no, I can’t go to that party, I already have two social things that day and I’ll be out of spoons they’ll have some idea of what that means
and yeah, I’m sure people will misunderstand and minimize and use it in weird ways like ‘all out of spoons’ vs ‘wow i just ran three miles let me collapse on a couch’ but tbh I’ve never seen anyone use the term like that, and even if some people do, so what? if they do that, they clearly don’t understand what spoons represent, and either they can be educated on that point, or they’re the kind of people who are just going to refuse to see your struggles as legitimate anyway.
and all of that’s not even counting people who don’t know they have a chronic illness, or that they’re neuroatypical, or that they suffer from depression, or anything else that tends to use up spoons.
I wouldn’t ever call myself a spoonie, because my spoon limitations wax and wane and sometimes I really do have to watch my spoons carefully and sometimes? really not that big of a deal. it’s a completely different kind of experience from those living in constant pain.
(I spent three years with a headache before getting it under control enough to just have daily headaches, okay, I understand the difference between even constant and chronic pain and how very much it affects your ability to Do The Things.)
I’ve always thought of spoons as a good metaphor for introverts’ limits on social interactions, and maybe it doesn’t work like that for neurotypical people, but who wants to bet a good number of the “introverts” out there are like me and don’t realize that (apparently) when other people say they’re introverts and can’t handle people/social things for that long, they don’t mean ‘because I get overwhelmed and exhausted and will be way more likely to meltdown over something minor’?
because I would not be surprised if I was not alone.



shamelessly_mkp: (Default)

November 2014

2 3 4 5 6 7 8
9 10 11 12 13 14 15
16 171819202122

Most Popular Tags

Style Credit

Expand Cut Tags

No cut tags
Page generated Sep. 22nd, 2017 08:40 pm
Powered by Dreamwidth Studios