The Spoon Theory - What's It Like To Be Disabled?
Updated: Nov 28, 2020
I first came across the Spoon Theory around 2014, as an undergraduate student working my way up the academic ladder. By that point, I had already made a small handful of friends. Most of them my age. And most of them diagnosed with some type of chronic illness that affected their lives in some way. As someone who grew up in the greater culture of neurotypicality and the able-bodied paradigm, it was hard for me to understand their struggles at points.
This is a story that happens quite often across the United States, actually. The CDC estimates that about 50% of all adults (117 million people) have one or more chronic illnesses, with 25% of all adults having two or more chronic health conditions. In 2016, 23% of all adults were estimated to have arthritis from various causes, more than 29 million Americans are living with diabetes, and 1 in 68 children in the US have been identified with Autism Spectrum Disorder. With the rise in worldwide prevalence of autoimmune disease and mental health conditions (especially in students) on the rise, it's not a stretch to know someone who has a chronic condition that makes navigating the world a little challenging.
And yet, our world was not built with the neuroatypical* or disabled in mind. So it is understandable how two things are common. One, it is hard for an able-bodied and neutroypical person to understand the challenges in everyday life that a disabled or neuroatypical person goes through. Two, for people with chronic illness, it is challenging to navigate the world with no accessible model to relate to.
*(a term used to describe people with diverse mental and behavioral disorders)
The Spoon Theory - A Metaphor For Disability
Enter the Spoon Theory. First coined by Christine Miserandino, who was diagnosed with Lupus, in her 2003 essay "The Spoon Theory." The essay describes Miserandino's conversation with a friend, which details Miserandino's attempt at illustrating what it's like to be disabled. In the essay, Miserandino ends up using a handful of spoons as "currency" for completing everyday activities. Getting out of bed costs a spoon. Showering costs a spoon. Making breakfast costs a spoon, etc. With a finite amount of spoons, it becomes apparent that a disabled person will not be able to do everything that an able-bodied person would in a day. If anything, there is the added "financial stress" of not having enough spoons to do everything needed in a day.
Miserandino's essay has not only helped able-bodied people better understand and help disabled people, she has given the chronic illness community a model to relate to. Many chronically ill people are able to better budget their lives and not become as frustrated with themselves, thanks to the understanding of "finite spoons." Of course, the frustration of disability is always there. But with this model comes an understanding and reminder to be gentle to yourself.
Furthermore, the Spoon Theory provides a very practical and simple way for doctors to understand their patients. One of the biggest and most consistent challenges of chronic illness is often not only access to healthcare, but also communicating with doctors. Even though most doctors are of good intention, it's often difficult for able-bodied doctors to fully understand what it's like to be disabled - a clear barrier to better care.
Understanding Spoons from Modern Neuroscience
In 2017, the Spoon Theory has gained notable popularity in the chronic illness community. So much so, that many people with chronic conditions refer to themselves as "spoonies." Funnily enough, the 2017 neuroscience book How Emotions Are Made: The Secret Life of the Brain details a similar theory. In her book, Dr. Lisa Feldman Barrett, PhD, introduces the concept of "Body Budget."
It turns out, that everyone has a "budget" that is constantly monitored by their brain. This is not to discount the experience of disabled people and the Spoon Theory, but to add to it. Like all of our physiologic processes, our brains are wired to keep (or try to keep) everything in balance. This includes internal signals like hunger, and external signals like love and comradery. This is our body budget. If we get out of balance, and out body budgets are low, we don't feel good. And that may lead to a desire to increase body budget, such as sleeping, eating, or connecting with others.
For disabled people, they're already starting with a low budget. Their bodies already don't feel good, and their brains are preoccupied with finding any scrap to put into the bank. Which often means they are prone to stay in bed or snacking on easily accessible foods. The thing is, it takes effort to get to the point where body budget can actually be increased through healthy habits. And chastising a chronically ill person for their lack of healthy habits is not always helpful. It's like chastising a poor person for not investing in a brokerage account.
Building Health and Adding More Spoons
Oftentimes, for people with chronic illnesses and conditions, trying to implement all the habits of healthy living is overwhelming. Even with able-bodied and neurotypical people, implementing a new healthy habit can be hard. This is much more so for a disabled or neuroatypical person. Although healthy habits may increase spoons over the long run, setting up those habits take a lot of them.
The current medical system is not very well set up to help patients increase their spoon cache. This is partly because face-to-face time with the doctor tends to be short, and also because visits are costly. Because people with chronic illnesses often need support just managing their symptoms, healthful habits are often set to the wayside. And this often results in disabled people having a constant uphill battle with their health.
With the direct care model, patients don't have to worry about paying visit-to-visit. Since they can get all the support they need from the monthly membership. This model of healthcare offers much more support to the patient, and usually with much more time to talk during the visit. Patients with chronic conditions they wish to address can feel free to take one step at a time (use less spoons), with as much support as they need from their doctor.