Telegram to TABs, on Spoon Theory

[Cross-posted to FWD (feminists with disabilities) for a way forward)

Message to TABs (Temporarily ABled folk):

Spoon Theory?

It’s not yours.

It doesn’t describe the sleepy feeling you get at the end of a long day, nor the feeling you get when your kid wakes up for the third time in a night, nor the feeling you get because you went for a bike ride yesterday or are pulling shiftwork right now or feel like a weekend nap or stayed up late last night reading a book or whateverthehell else is going on in your life.

It’s a word for people with disabilities, an oppressed group, to describe our lived experience, which is not the same as yours. Our oppressors taking our language is not ok.

Many of us know what not having a chronic illness feels like, including not-having-a-chronic-illness while parenting or exercising or pulling shiftwork, and it is nothing like this. Ordinary done-a-bit-much tiredness has nothing in common with the experience of people with genuinely limited spoons (and typically a whole other bunch of symptoms), and who are going to feel the same every single day for the foreseeable future. No.Thing.

Your co-opting of this term is NOT OK with me.

STOP

~~~
Further reading: “The Invisible Crutch” at She Dances On The Sand, an “Invisible-Knapsack”-style privilege list.



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34 replies

  1. Totally true. And annoying for those with a limited spoon allocation.
    But also raises interesting questions about who *is* allowed to use spoons. I have a chronic injury that I don’t make a big deal about, but it does = limited pain tolerance, unexpected fatigue, and intolerance of lots of activities of daily living. Does that make me disabled and therefore entitled to think in spoons? Or not, because I don’t have a chronic illness per se?

  2. There’s a part of me that is reluctant to call upon the spoon theory to decribe living with depression and anxiety. It’s the part of me that hesitates to think of depression as a disability, that punishes myself and admonishes myself constantly for not just “getting better”, or “getting over it”.
    As someone who sometimes has relief from depression, I have experienced both days when I am simply tired, and days when I just cannot get out of bed due to the crippling nature of my mental illness. I can tell the difference. Tiredness can be cured by sleep, or held off with energy drinks. But depression? That crippling feeling that means all your energy is used to not hurt yourself? Doesn’t just go away.
    (I’m speaking of mental illness here because it is what I am familiar with. Obviously the experiences of someone with e physical disability or a different type of mental illness will be different to mine)

  3. Exactly what PharaohKatt said. I too feel reluctant to use Spoon Theory to describe living with depression / anxiety, even though it does feel like a very accurate description of how it is. I think because I tend to have this internalised thing where it’s not the same thing because it’s “all in my head” and as PharaohKatt says, I should be able to just get over it.
    And also because there *are* sometimes things I can do, not to stave it off, but to stop it from being even worse than usual – and ironically enough given what the people were saying to Lauredhel, “getting enough sleep” is one of them – it doesn’t make me *better*, but not getting enough sleep makes it *even worse*. Plus medication can help (sometimes, not all the time) so again that feels a bit different. So – not sure.
    But TAB people using Spoon Theory to describe “being tired”? No. Just no.

  4. Emma Someone – I don’t think there’s a passcard. (Unless you want a parking spot, and we know how fraught that issue is!) If you say you have a disability, speaking for myself I believe you – & you don’t have to make a big deal about it to gain that.
    PK – I know some people have tried to say that spoon theory is purely about ‘physical’ illness (scarequoted for a reason), but I have no problem with people whose disabilities have been designated ‘mental illness’ talking about their lived experience in that way, if it’s what fits.
    annaham: heh. And carving knives, and whisks, and food processors, and thermomixes…

  5. Borrowing tomorrows spoke takes just one spoon from tomorrow. Where do I get that banker? Borrowing a spoon from tomorrow costs roughly one and a half spoons for each of the next two days or so.
    (And for some of you, CFS has just been linked with retrovirus XMRV, a strong link which should change attitudes, and the attitudes of others can cost spoons too.)

  6. Many ABs have forks and knives and other fancy utensils; co-opting our spoons is just not okay.

  7. Jumping back in…
    Hear, hear. Like PK and Ruth, I’m always a bit reluctant to use spoon theory, partially because I’m still hung up on my mental illness and where it belongs in the continuum of disability… But at the same time it fits, and there’s also some very real physical consequences of said mental illness (my chosen SSRI is necessary for my functioning, but the side effects mean I’ve suffered near constant fatigue for my adult life…writing that out is a bit terrifying, actually–I really need to do a post on this, once I don’t have academic work to do).
    As for balneus, that’s a really good point–what’s the cost of dipping into spoon reserves, and can someone good at economics calculate mine?

  8. I use it for mental illness. I hope that one day I’ll be able to graduate from spoons to other cutlery, but as it is right now… it’s definitely a disability.

  9. Hear bloody *hear*. After some worries about appropriation aka “am I really disabled?” I have jumped on using spoons to describe the difficulties I get wrt AS, in particular executive dysfunction. It doesn’t feel entirely accurate to me, but it’s just such a *relief* to have some way to describe “okay, so I can either take a shower, or I can eat, or I can leave the house, but I certainly can’t manage more than one of these” without starting to use terms like “lazy”. Spoons have really helped me to understand how my world works and how it differs from the way most people’s worlds work and that going “all I have to do is try harder!” is simply not going to work. People whose worlds work the usual way going “ooh, cool slang!” and starting to talk about spoons for *their* energy levels piss me off.
    That said. I once got into a debate on an anti-racism comm about whether it’s appropriate for PoC to use the spoons terminology wrt educating white people about racism, and was told I needed to check my privilege. This is NOT NOT NOT a “those meanies told me I was racist!!” comment, because thinking about it I suspect they may have a point; namely, that since I’m privileged with respect to race I do not and cannot know how much energy it may take a PoC to manage everyday life because of racism. Also, I’ve seen disabled PoC say that they don’t see the problem with using “spoons” for anti-racism and think the resistance from white disabled folks is racist. And still, part of me really dislikes the idea of people using spoons terminology for *anything* that is non-disability-related, and I’m not sure whether it’s privilege or marginalisation speaking.
    Thoughts?

  10. I’ve used spoon theory to describe my anxiety before. I’ve had periods in my life where I was stuck at home because of my anxiety and couldn’t even speak to my mother. And even when it’s fairly well-controlled, the structure of it is still the same (I just have lots lots more anxiety-spoons to work with). Speaking as someone with various physical illnesses and the anxiety plus a load of Issues (beginning to come to terms with some serious dissociative stuff, for instance) – spoon theory feels like it first the same for the mental stuff as it does for the physical – absolutely.
    Now, the “I’m overworked and tired” (but I wouldn’t be tired if I grabbed an energy drink or had an extra hour of sleep tonight) people using spoons – lauredhel, I agree with you. Just no, no, no, no no.
    People who feel like they could fit on the disability spectrum generally do, if they choose to identify themselves that way. If you’re wondering whether you do, 99% likely yes, you do. But this isn’t about that… I doubt most parents would walk around declaring “Yeah, I’m disabled” to everybody.

  11. I have tended to use, not Spoons, but a roleplaying analogy – the Dice Pool. The idea (in my head) is that you still have to roll to see if you succeed at the task, and whether or not you succeed, you have burned that die until your Dice Pool is refreshed. I have a complicated equation as an analogy for how my Dice Pool is refreshed – essentially, the fewer dice I have burned, the more I get when it’s refreshed (burning down to nothing takes more than one refreshment period to recover from), and when I borrow from tomorrow, it cannot (tomorrow) be refreshed to greater than the full amount minus the borrowed amount. Thus, the more I borrow, the fewer Dice I have to burn 😦
    Complicated, but it works in my head 😀

  12. Dice pools work!
    I just sort of like the idea of spoons thanks to the Tick, and also because I am rather fond of the idea of ‘sporking’ people who are frustrating me.

  13. Dice pool sounds like a good way to do things. And really, what’s important is what works for you.
    It does interest me the different ways spoons affect us, because each person is different. To not derail, I’ve got a post here talking about that.
    Back on topic though; I think the reason TABs might co opt the theory is that they really don’t understand what it’s like. They don’t get the fact that it isn’t just a bad day, where you can get a good night sleep and feel better. It’s the constant weight, the constant rationing, the knowledge that this is something that will not go away.
    It’s comforting to me that other people feel the same way about mental illness. It makes me feel not alone, like people *get it*, you know?

  14. I think those people who would say that people with mental illness do not have spoons do not understand mental illness as disability. As an aside, the idea that mental illness is somehow separate from physical illness derives from the bizarre notion that our minds are somehow apart from and thus are neither affected by the rest of the body nor have any affect on the rest of the body. This idea leads to ignoring the physical effects that mental illness can involve (eg, sleeping problems in depression). But more to the point, even if one were to subscribe to the idea that somehow mental and physical illnesses are fundamentally different, the effects can be much the same. Does it really matter if one can’t get but so many things done in one day because of lupus or because of anxiety? I’d say it doesn’t.
    Quite frankly, I find the idea that mental illness does not involve spoons is a form of saying “It’s all in your head.” with the implication that the person is really fine if they would only quit whining and get on with it. In short, it’s ableism, pure and simple. Whether it’s a TAB person saying it or another PWD does not change that.

  15. There are also “spoon theives”. Some you notice at the time of the theft, some are skillful pickpockets. For me, pickpockets include subclinical or prodromal infections that raise body temperature (subdural refrigerators that lower brain temperature by two degrees are helping epileptic rats in the lab now). Theives you notice (too late) include MSG and aspartame, or delaying a pill until too late.
    And each time you borrow a spoon from tomorrow, by tomorrow you may have to borrow TWO spoons, while the “interest rate” keeps increasing. Either that, or a low spoon supply seems to attract theives (e.g. more likely to be dodgy and forget another pill).
    Luckily for me, I have quite a few spoons, unless a string of spoon theives or getting spoons on credit on a series of consecutive days take their toll.

  16. As an aside, the idea that mental illness is somehow separate from physical illness derives from the bizarre notion that our minds are somehow apart from and thus are neither affected by the rest of the body nor have any affect on the rest of the body.

    THIS! Our minds are our bodies. And vice versa…
    I’ve described my experience of mental illness in terms of spoons before. It’s helped me conceive of mental illness as a disability. Because it’s true. Right now I have the deep tiredness of knowing that I need to work even more hours to get by, and yet my body can’t sustain itself as it is. I keep borrowing and borrowing and can never quite pay it back.

  17. Since comments aren’t on for that post, Tlonista, I just wanted to say that I really identify with what you had to say; it’s so close to my own experience with OCD & depression. (Apologies if that derails, anyone.)

  18. I, like many others here have had a time thinking of myself as disabled, because I “just” have mental illness and sensory issues. I feel like I’m co opting the disability rights movement sometimes, but I don’t really seem to fit anywhere else.

  19. I have both a mental and physical disability, and I have to say that while the physical disability takes more short-term spoons (“I can’t go to your party, I’m in too much pain”), the mental disability is more debilitating overall (“I need to add another year to my degree, because I don’t have the depression/anxiety spoons to take a full courseload”). I think the idea that mental illness “doesn’t count” is a sign of how little our society understands that mental illness is not voluntary, and is seriously debilitating.
    I think it’s kind of cute when TABs I know use spoon theory (“Aww! They’re trying to imagine what it’s like to be me!”) but I think if I saw them using it consistently and unironically, I’d get fed up with it too.

  20. I think the other reason I feel as if I’m co-opting the disability rights movement is that even though I do have a disability, I still have able-bodied privilege. I don’t need to worry about the height of counters, or working lifts, or toilet stalls with enough room to fit a wheelchair, or chairs being available, etc. This means, for myself at least, I need to work extra hard to make sure I’m not just focussing on my mental issues, that I still campaign for accessibility.
    It gets tricky, of course. I suppose that it could be argued that people with a physical disability but neurotypical mind can choose not to focus on mental health issues… It’s one big pot of intersectionality isn’t it?
    Lis:
    I know what you mean, and I struggle with that myself. I’ll feel lazy and useless, even though I know it’s not my fault. It still feels as if I should be able to just get up and get on with it. Which of course just makes it worse. Not to mention the fact that insomnia is one of my symptoms which does make life tricky.
    *hugs* to everyone on this thread who accepts them.

  21. @PharaohKatt – It is all one big pot of intersectionality. What disabled people have most in common is a similarity in the way we are treated by a society constructed for the benefit of the temporarily able-bodied. But there are wide divergences in how the specifics of that treatment. Those differences do not invalidate the varying disabilities but they can make it hard to keep that unifying commonality in mind as you say.
    I am somewhat bothered by your unqualified self-reference to having “able-bodied privilege” even though you have a disability. As I said in my previous comment, the mind/body duality is artificial; the mind is embodied. Thus, “able-bodied” includes neurotypicality. The privilege you speak of is inherently limited in scope; it only applies to physical accessibility issues in the example you give. As you point out, if you suddenly talk about an example where neurotypicality plays the larger role, say, taking a timed examination in a room of 400 people, a person in a wheelchair may well have far more able-bodied privilege. The privilege is situational only. What situations the privilege exists in vary based on disability, but there is no uncomplicated privilege for any but the “temporarily able-bodied” (and even that is limited in time, as the term alludes to).
    Basically, I am concerned when disability discussions are limited by the participants’ framing of disability as only a physical issue or only a mental issue. It ignores the intersectionality that does exist and prioritises one type of disability as more real and more worthy of consideration than another. Limited discussions result in limited answers.

  22. Logged in to respond to a couple of posts but I think Lucy has said pretty much what I was planning to say, thankyou! I know spaces that accept physically-labelled disabilities, mentally-labelled disabilities, neuroatypicalities all as “disabilities” without rankings or authenticity determinations can be hard to come by. It is something we try to take as a base assumption here and work towards, so it’s good to know if we’re falling down on that (pretty sure our comment base will stay on that case!)

  23. Lucy:
    thank you. That makes sense 🙂
    also, timed exam… 400 people… Egads *shudders* (not even remotely sarcastic)
    Yeah, I definitely see your point. I guess it’s just that part of me that still see mental disability as “all in my head”. It’s not an easy thing to overcome when everywhere you look society is telling you you’re faking it.
    Again, thank you.

  24. Pharaoh Katt,
    Glad to help. I think that mental illness is still too often framed as a moral failing or at best a pathology (note the fact that I have to use “mental illness” to insure people know what I’m talking about) and not as a disability which is what it really is. The whole “in your head” thing is the most blatant example of how ableism frames mental disabilities.
    And, as for the example of a timed exam with 400 people in a room, let’s just say I didn’t pull that one out of thin air. In coming back to university, I’ve also come to a greater appreciation of the realities of mental disability.

  25. Fabulous discussion, everyone, reflecting a great post, Lauredhel. Just wanted to pop by to say so 🙂

  26. It’s also worth thinking about that “accessibility” doesn’t just have to mean physical disabilities. I have some sensory issues due to Asperger’s and I’ve started thinking about places I can and cannot go because of that in terms of access – so e.g. if a place is only contactable by telephone and there’s a lot of background noise on the other end, or if it’s crowded with people and with no place to run off to to get some space, or if it’s just plain *too loud*, that’s an access fail for me. (I used to think of it in terms of “I just don’t like telephones/crowds/loud noises!” but this puts the blame back on me and completely downplays how awful those situations can be.) I have “able-bodied”* privilege in the sense of not having any physical disabilities or mobility impairments, but I still have to worry about access because there are still quite a few places I simply cannot go or can only go at the cost of many spoons because of my disability. And although I don’t need to worry about stairs, a wheelchair user might not realise that the way the roof is shaped in a pub causes echos and weird acoustics, and that coupled with putting on music makes it an absolutely horrendous place for someone with auditory sensitivity and processing issues. And you can make similar arguments re: access about a lot of mental issues!
    * Regardless of arguments about mind-body duality, I still can’t help the instinctive flinch every time I see the word “able-bodied” used to refer to anyone without a disability. I use “currently abled” or “currently enabled” myself, but I doubt that’s going to catch on.

  27. Kaz: Definitely. I started writing a bit about this a while back, in “Rearranging accessibility: more on invisible disability accommodations”, which is in the Related Posts on this post, but it’s incomplete and suggestions/additions/extensions are always welcome. People with multiple chemical sensitivity and light/sound sensitivity seem to be particularly excluded in discussions of accessibility to public spaces.

  28. light/sound sensitivity

    This is something which, to my shame, I haven’t paid enough attention to with my son. I just assumed it was a kid thing, but from what people have said here, it’s probably not. Thanks for the info.

  29. *tiredly* Yes, thankyou.

  30. This post has been included in a linkspam at access_fandom. Thank you.

  31. I realise this post is a month old, but this is a subject that’s been on my mind for a while.
    I’ve had undiagnosed Coeliac’s Disease for god-knows-how-long, and have been noticeably anaemic as a result for the last year or so. I’ve used spoon theory to describe how I’ve felt during that time. However, given that, hopefully, I’m going to get better (If I can stick to the diet and that’s all that’s wrong with me – my iron has nearly got back to within ‘normal’ levels, but there’s still a load more malnutrition stuff to deal with), am I out of line to be using it?

  32. TamerTerra: It wouldn’t bother me. You have a long-term problem, and while your symptoms might improve, the condition is never going to disappear completely. If you identify as having a disability, you identify as having a disability – I’m not in the business of setting an entrance test for your identity.

  33. while its not a disability, I have used spoons to describe my emmotional ability to do things relating to my childcare studies since the death of my son – ie negotiating not doing the playgroup activities because after dealing with children for that time, I won’t have enough emotinal strength to do my 2 weeks at the childcare centre…
    But I have more used it in my own mind, and to my partner, as a simpler language to explain how I have to work these things out – not in common speech to anyone.
    I’m sorry if this co-opting isn’t okay, and I shan’t be doing it anymore now that I have worked it out in my mind better…

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