I first heard about “spoon theory” from my mother when I was younger. She had lupus, and hearing “I just don’t have the spoons for that today” wasn’t anything out of the ordinary in the house, it was just another Tuesday. It was the first time I’d heard someone use that example for describing a pretty much invisible currency. I didn’t think about it again for years though, until it was brought up in class, and suddenly, it was linked to the social model of disability.
The original metaphor from the text by Mike Oliver (though some may say the idea is limited, even he agrees with a revamp) is deceptively straightforward: you start the day with a fixed number of spoons, and everything costs one. The monitoring, adjusting, recalculating, a whole invisible economy running within that from the outside, looks like nothing at all. What I didn’t think about before the class was how easily that metaphor could get flattened into medical fact, like the body itself is the only thing setting the exchange rate of spoons. The social model says otherwise: disability isn’t just what a body can and can’t do, it’s what happens when that body exists in a world that didn’t consider it or “price it in.” Rigid schedules can disable, harsh lighting can disable, even doctors who don’t believe you the first time.
I started to think about the spoons as a tax on attention, in a way. The mental overload of staying vigilant constantly, which is exhausting even when nobody can see it, maybe even especially since nobody can see it. For people whose disabilities are visible, spoons can be spent managing everyone else around, like we saw in the video Taking a Walk with Judith Butler and Sunaura Taylor. The unsolicited help, the staring, the assumptions made before there’s even a word said. On the other hand, for those whose disabilities live under the skin, the spending can run a different way. Like toward proving the cost is even real in the first place, trying to translate a constant yet silent workload into something digestible for others.
Neither tax is the cheaper one. Both are the price of a world that was built around a narrow idea of what “normal” is. So, why are spoons so damn expensive?
Because nobody who set the price ever had to pay it.
Well said! I appreciate your associating the Spoon Theory with the wider concept of “Crip Tax”* and expanding its application to the social model of disability from its original illustration of the limiting factors of impairment and disability** generated by chronic illness; however,
though Mike Oliver (RIP; 1945-2019) was the first professor of Disability Studies and a vanguard of the field, Spoon Theory was devised by Christine Miserandino in her blog, But You Don’t Look Sick?, in 2003 as an illustration of her life with systemic Lupus. The domain is down now, but an archived .pdf of the essay can be found here: https://cdn.totalcomputersusa.com/butyoudontlooksick.com/uploads/2010/02/BYDLS-TheSpoonTheory.pdf .
Speaking of Lupus, I’m not surprised you learned about Spoon Theory from your mother and I hope she’s having easy days with a lot of spoons. I looked up Miserandino today in order to check in on her career and condition and the latest posts I can find from her on social media are from 2024. I hope she’s doing (as) well (as she can).
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* how much more exhausting and expensive everyday things are for people with chronic illness and other disabilities
** Sunaura Taylor’s explanation, in her walk with Judith Butler, really nailed the difference between these for me in a way that other authors and scholars hadn’t previously been able to do.
Your title really brought me in! The way you connected your personal experience with the spoon theory to today’s social model was done in a cohesive way. I completely agree that those who experience disability under the skin have a different way of spending. I think of so many stories and examples I have heard and seen of ones who have to, like you said, “prove the cost is even real.” Well written!
I like the fact that you mentioned the spoon theory; it’s kind of like a currency with a hidden language for non-disabled people to understand. Although having to create a whole new language for others to understand how your disability affects you can be a ton of spoons spent in itself, yet also be helpful in the long run at the same time. It’s difficult to have to manage how many spoons you can afford to spend every day before your body starts screaming in exhaustion.
I like how you mentioned how a lot of things people find normal can be disabling and how you compared it to a tax. There are a lot of people who aren’t aware of these things because the environment is usually built around people who don’t find things like bright lighting or rigid schedules a bother. It’s like a hidden tax that some people have to pay more of just to get through the day.
I loved the ending of this post. Things that cost spoons rarely come from people who use spoons. I love the blunt wording you used.
I also liked the mention of the “constant yet silent workload” that those with disabilities carry. I can think of a lot of situations where normal things have a mental and/or physical cost that’s hard for one to explain and even harder for someone else to understand. It’s always interesting to think about.
This is a powerful piece! I love how you takes a simple metaphor and turn it into a moral mirror. I loved how you moved the conversation from individual fatigue to the architecture of a world that silently taxes some people more than others. That shift makes the personal political without ever feeling preachy.
Your writing honors the invisible labor of attention and the emotional cost of having to prove one’s reality, and it does so with compassion and clarity. It left me thinking about small, everyday design choices and how they add up into real barriers, and it made me want to notice and change the ways I unconsciously set the price of someone else’s day.
Thank you for making something familiar feel urgent and for giving language to the quiet calculations so many of us carry. ❤
really liked how you described spoons as a “tax on attention” because I never really thought about disability in that way. It made me think about how much extra energy people with disabilities have to spend just navigating a world that was not necessarily designed with them in mind. Something that might take very little thought or energy for one person could be exhausting for someone else because they also have to think about accessibility, accommodations, or even how other people are going to react to them.
I also really liked your point about visible versus invisible disabilities. Even though the experiences are different, both can force people to spend their “spoons” dealing with other people’s perceptions of them. Someone with a visible disability may have to deal with staring or unwanted help, while someone with an invisible disability may have to constantly prove that what they are experiencing is actually real. Your last line especially stood out to me because it shows how a lot of these extra costs are not necessarily created by the disability itself, but by a society that was built around a very limited idea of what a “normal” body should be able to do.