If you don’t know the spoon theory, it’s a model for disabled people to help explain their day-to-day life with disability. It was coined by Christine Miserandino, herself a disabled person (who has lupus, an autoimmune disease).
Whereas non-disabled, neurotypical people have an infinite or near-infinite amount of spoons, disabled or neurodivergent people only have 12. Every time you do something in the day, you take a spoon away. Waking up takes 2 spoons already because you likely didn’t sleep well due to pain, insomnia, joints issue, not being able to lie in one position for too long, stomach cramps, you name it. So that’s 10 left and you’ve only just started the day.
Then getting dressed takes 3 more spoons away, not 1, because it’s not just getting dressed. It’s getting out of bed, picking an outfit, removing previous clothes, putting on new clothes. For abled people this might be 1 spoon. But for us it costs 3.
It goes like that through the entire day. If you’re not careful, you’re not going to have enough spoons to last the entire day.
The model has become very influential because sometimes it’s difficult to explain to people what disability is. My model is/was, what takes you 1 minute takes me 3.
The spoon theory applies to me too, despite my nitpicks. If I were to use it, showering takes away two spoons from me. Getting dressed takes 2 or 3. Prior to disability it took none to one, because I suspect I have some neurodivergence and tiredness definitely plays a role lol.
But here’s where I have some issues with this model. Some of them are part of the original (you can read her original post here), and some are part of how it’s been picked up by non-disabled people to try and explain it.
I want to add, just in case Christine comes across this somehow, that none of my criticism is directed at the author or person(s) behind the theory, just the model itself, because I feel it’s incomplete and could be improved.
The first thing is, the original model says “you start with 12 spoons”. But you often don’t actually know how many spoons you start with. Some people might be able to get an idea of how many spoons they have due to how much pain they wake up in, or how tired they wake up in, but in many cases it’s also just impossible to know. I often say “I know about as much as you do about my day”. Will this activity be a trigger? Yes, that’s likely. But when exactly it will trigger and how much it will trigger is not for me to decide.
It also implies, not necessarily through Christine’s original post, that you can do the activity, you just can only do fewer activities overall in the day. That’s not entirely true. On most days even just picking up the vacuum cleaner and plugging it in triggers an episode. I can vacuum for 2 minutes at most before I have to stop. It takes a spoon, in the analogy, AND triggers an episode.
My second thing is I don’t really like the name ‘spoon theory’. Why spoons? I get where it comes from, Christine explains this clearly, but to me it conveys the idea that I can’t be trusted with knives or anything other than a blunt object lol. I find the name infantilizing because of that, and I think it may promote a skewed idea of disability to abled people who hear the term for the first time. You may have heard “I don’t have the spoons for this” sometimes. Idk if it’s a language barrier thing but it sounds like a redditism to me, it’s just kinda cringe.
Thirdly there’s not a lot on what happens when you run out of spoons in the original theory (she is correct that you learn to plan your day, even days ahead, and try to never run out). Blind spots like this one then get filled by people who only have a surface understanding of the theory, because they don’t live it, and some accuracy is lost each time, like a copying machine making copies of a previous copy.
One instagram post I saw explaining the theory talked about tiredness. I wish my problem was just tiredness lol. Tiredness is valid (I know it well), but it doesn’t capture the full extent of what you can expect when you run out, this was filled in by the poster who took a guess. You can be in so much pain when you run out that you can’t even fall asleep anymore. Or in my case, you can be in nonstop nausea to the point that the slightest touch, the slightest gust of wind, the slightest feeling of cold, OR movement, OR sight – the slightest sight of dust, the slightest sight of a mess, might instantly trigger throwing up mechanisms. I have to stay perfectly still, focused on not doing anything, not thinking about anything, because any movement I do – even the smallest eye movement, might trigger it.
And it doesn’t stop after you’ve thrown up once. It continues, because nothing came out, so your body doesn’t feel satisfied that it’s removed whatever it wanted to remove. So you repeat the process, the slightest touch of a hair strand on my skin starts it again, and I puke again. This can go on 3 to 4 times, and all this time I’m trying as hard as possible to keep it down, because of course, the body doesn’t want to throw up. The body doesn’t want to be in pain. These are protection mechanisms, you’re not supposed to experience them 24/7. Pain, nausea, tiredness, is your body telling you you’ve reached your limits or alerting you to a problem. It wasn’t evolved to be felt all the time.
What happens if you run out while you’re at work? Well, this is your day now. It’s 3PM, you’re at work, the car is parked outside, and you’re in so much pain that you can’t even think anymore. You’re about to throw up so much that you can’t even have a thought. What do you do? Run to the bathroom? But you’re gonna throw up on the way in front of everyone. Drive back home? But you can’t drive in your condition. Ask for a calm space so you can try and calm down for a few hours? That’s if they even have this place, if they’ll even allow you to use it, and you can’t move, remember? You can’t even speak.
You don’t have an answer? Neither do I. Neither does anyone. What would I do if I had an episode while at work? I dread to think about it, and I’m glad that I don’t have to face it because I’m not employed.
How do you live with this? Well, you just do. I love dogs, and I admire how dogs are able to roll with the punches. It’s something dog lovers often remark on, how even when in pain or sick, dogs are still going on with their lives. We are not so different from them. It’s been so long since my problems started that I forget what it was like not to be nauseous every time I try to make lunch or take a shower or post a letter. You just adapt to your material conditions.
The model otherwise gets things very right, of course. It’s based on the lived experience of someone with disability. She is correct that you have to learn to plan ahead, and that you might be able to borrow on tomorrow.
What does borrowing on tomorrow’s spoons mean? It means that on some better days, you may be able to push yourself a little more. But it’s not always a good idea, because it might make tomorrow worse. It depends on the person, but I can definitely confirm that if I do too much on a good day, the next day is likely to be worse.
Despite the limitations in it it’s still a useful model, I think if you take the time to explain it to people around you so that you can tailor it to your own experience. Like I said my issues with the model are centered around its loss of accuracy and how this dilutes the model to the point that it becomes difficult to understand instead of easy to understand, which was the entire point of it: to explain to non-disabled people what the day-to-day is like with a disability. Dialectically, we critique and refine models so that they emerge in a new shape, more advanced than they were before.
I’ve never heard of spoon theory before, but it makes sense. I definitely understand being unable to do much because you’ve already done something that day and have very little energy left. Also since my stroke I get injured so easily because my left side is so weak now, if i do something like walk a really short distance then my chronically inflamed left achilles tendon flares up so badly I can’t walk at all for weeks or longer afterwards.
Still, i think a lot of people just don’t want to understand what being disabled is like. Same thing with being poor. You get comments about “just try this,” or “there’s so much help available, have you tried this…” usually delivered in a really judgmental tone like it’s your own fault because you aren’t trying hard enough and they just don’t want to hear that those things aren’t accessible or won’t work for you, for whatever reason.
Another thing with being disabled, at least IME, is you can never plan for the future. Due to disability-induced poverty and chronically relapsing health emergencies I am always in survival mode, just trying to get through the day or the immediate problem ahead of me. Never enough money to do anything other than try to scrimp together enough for whatever the immediate issue is, and no point planning anyway because you never know when your health will take another turn for the worse or relapse from remission. It’s difficult to get people who don’t live like this to understand though. They always seem like they blame us somehow, like we aren’t trying hard enough. I had one person on a mutual aid post I made on hexbear complain that I am always lurching from crisis to crisis, asking for help to buy whatever thing I need at the time and I should plan better and save some for emergencies and I was like “Save what? It takes me weeks and multiple posts to get whatever help I need to get the thing I need right now, what am I supposed to save? How?” it was just mind-boggling that someone would need this explained to them. If I have to beg strangers for food, transport and medical supplies, and make post after post over weeks for the same thing, how can anyone imagine I have enough to save? I just don’t even know how to try and explain all this to people any more, it’s exhausting.
I’m sorry you’re going through this. It’s mind-boggling that the DWP would leave you like this with no income for months… it’s like the cruelty is the point.
It’s not the first time for me. Also, I’m kind of lucky that my appeal is due for January. I’ve heard of people having to wait years for their appeal. There was a case on reddit where a woman had a stroke and like me, was given zero points and had to go to appeal. But her appeal took three years. During that time she had no income and lived off a mixture of loans, food bank and handouts from friends and family. After three years she won her appeal and was given three years backpay. But she only won a three year award - meaning that backpay was the full amount she was given, and they considered her award ended then. So she immediately had to start a new claim to continue receiving further payments. (because she’d gotten in so much debt during her appeal that her backpay all had to go to paying the debt). So it’s very frustrating to me when society makes out that claiming disability benefits is too easy. it really isn’t. Many people, like Errol Graham and Mark Woods, have died of starvation after their benefits were wrongfully stopped. many others, like Jodey Whiting, have committed suicide after their benefits were wrongfully stopped. The help I’ve received on Hexbear/lemmy has been the only thing keeping me afloat otherwise I’d go the same way. But this is all because society wants it this way. People get so angry and jealous at the thought of people getting money without working, and scared that people who aren’t really disabled might claim. They’d rather it is kept as difficult as possible to claim. They’d rather see genuinely disabled people die rather than having a chance of a faker getting an undeserved payout.
Here the ‘expertise’ doctors apparently had to start recording appointments because there were too many denials of disabilities. It also takes a whole year from the time you submit your claim to the time you get the slightest answer, like they purposely make you wait a year before getting to it. After that I don’t know lol, I’ll discover it when I get there.
So much money is spent in denying people care, that it would be cheaper to just hand it to them without questions, even if you take into account the people that would ‘cheat’ this system. Who’s the real cheater really? the ‘doctor’ whose job is to say “haha no you don’t get benefits :)”
Similar here. 70% of disability benefit refusals are overturned at tribunals. And all those tribunals, appeals and everything cost a lot of money and the government has to give people backpay when they win. Would probably be cheaper to just give people what they’re entitled to. Not to mention many disabled people, even when they win, get short awards so they have to go through reassessments just two or three years later again. Wasting even more money and causing backlogs in the system.
I get the sense a lot of people who have trouble understanding disability get tripped up on a kind of bodybuilding-based view of the human condition (and it does sound like spoon theory pushes back on this in its way).
The implicit belief of what I’m calling bodybuilding view being that our existence as a whole functions something like building muscle: it breaks down some, in order to come back stronger. This may be true for muscle building (under the right conditions, for an abled person) but I don’t think there is any evidence that it extends to everything else like some implicit characteristic of the human body and psyche. An obvious counterpoint to the bodybuilding view is that we all age out of existence eventually, if we even make it to old age, and part of that process is a certain amount of (thus far, in medicine) unstoppable degradation. Still, you see rhetoric like the bodybuilding view in how people talk about traumas sometimes, or they’ll use phrasing like “adversity”, making it sound like a softer form of challenge that is making you “become better.” This then gets used to normalize all kinds of horrible struggles people have to go through and wires get crossed… you get people mixing up “a person who has suffered greatly trying to find a silver lining” with “the person is better off in the long-term because they suffered” (two very different things). It’s very confused and bizarre, and seems like a kind of denial of our mortality, but also just something that only holds together as a point of view if a person is thoroughly abled enough and/or supported enough that they don’t ever have to do that halting, isolating process of working out how to muddle their way through in a way that others simply don’t have to deal with.
Part of what has gotten me thinking about this over the years is my struggles with what is likely ADHD. And I think I have, in trying to understand/explain it better through a comparison to chronic fatigue, accidentally hit on stuff similar to spoon theory before. The difference for me being that it’s more like mental spoons that run out rather than physical.
But at any rate, I’m sorry that you and others like you deal with such struggles. I wish we had societies that were more understanding and supportive. And I think it’s worthwhile trying to refine the theory, so that people can more readily understand.
