My issues with the spoon theory/analogy

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.