Spoons are Expensive

Being disabled is expensive, but not just because of the state of the US healthcare system. Often money can buy spoons, but all too often the financial decisions made by disabled people who are trying to budget their spoons are condemned by non-disabled people as irresponsible.

It’s no surprise that living with a chronic illness or disability in the US can be expensive given the current state of the US healthcare system. People in the neurodiversity community often joke that “mental health is for the rich” given the prohibitive costs associated with mental healthcare. However, the financial problems faced by neurodivergent people aren’t limited to the costs associated with receiving healthcare.

Neurodivergent people often make financial decisions that seem irresponsible from an outside perspective. It’s important to note that this problem isn’t limited to neurodivergent people; poor people regularly face harsh judgment from higher-income people for any purchase not deemed “necessary,” and research has shown that this is the result of a pernicious double standard in which poor people are judged for their purchases not because they can afford less, but because they’re incorrectly presumed to need less. This is a complex topic, but I want to specifically focus on the reasoning that goes into many of the financial decisions that neurodivergent people are forced to make as a result of their neurodivergence and hopefully shed some light on why seemingly irresponsible financial decisions are often actually a result of careful consideration and cost-benefit analysis.

Neurodivergent people are used to being chided and condescended to for the things they do as a result of their neurodivergence. People with ADHD usually spend much of their life being called lazy and told they need to focus more. People with depression and anxiety are often treated like a simple change in attitude or outlook is all that’s needed to solve their mental health problems. This extends to the financial decisions made by many neurodivergent people—particularly when it comes to people with disabilities that limit the amount of mental or emotional energy they have and force them to ration their energy to make it through the day.

In her formative essay, The Spoon Theory, Christine Miserandino introduces the concept of “spoons” as a unit of physical, mental, or emotional energy used by people with various disabilities to explain how their disability affects their life and causes them to have to make tough decisions about how to ration that energy. In the essay, Christine explains to a friend how having Lupus means she has a limited number of spoons at the start of each day, and she has to “spend” them to complete even basic tasks like getting dressed, taking a shower, or cooking dinner. Typically, this means she has to make tough decisions on any given day about what to spend her spoons on—something most people wouldn’t have to think about. In this essay, Christine uses the spoon metaphor to explain the limited physical energy she has because of her disability, but the metaphor has been adopted by various neurodiversity communities to explain the limited mental or emotional energy they have because of their disability.

Having to ration spoons informs a lot of the financial decisions that neurodivergent people make. Often, money can buy spoons. Or rather, not spending money can cost spoons. What appears on the surface to be an imprudent waste of money is often the result of a complex cost-benefit analysis between money and spoons—a resource most people don’t have to manage so carefully. To illustrate, I’ll provide some examples of ways in which this can play out in day-to-day life.

Imagine that you need to buy some new clothes, but going to a clothing store and trying them on will cost a lot of spoons. So you order them online and pay the added cost of shipping. Then you find out the clothes don’t fit, but going through the process of returning them—interacting with customer support and mailing them back—will also cost spoons, so you end up having to eat the cost of the clothes you ordered and just order new ones in a different size.

Maybe the place you go to get your hair cut is really expensive, and you could save money going somewhere cheaper. But part of the reason you go to that place is because they accept walk-ins, saving you the spoons it would cost to call ahead and make an appointment. This place is also not usually busy, crowded, or noisy, which might also save spoons. You’re also familiar with this place—you know exactly what to expect going in. Going somewhere else where you don’t know what to expect will cost additional spoons. Suddenly, going somewhere else to save money doesn’t make much sense, because you’ll be “paying” significantly more in spoons.

Let’s say you get your phone or internet bill, and there’s a charge on it you don’t recognize or know shouldn’t be there. You could probably call their customer service line to get it removed or refunded, but that phone call will cost spoons that you don’t have. So you pay a little extra each month so you don’t have to make the call and spend those spoons.

Learning how to cook is a great way to get healthy and delicious food on the cheap. But maybe you don’t have the spoons to cook for yourself. You need those spoons for work or school, and you’ve got to cut something from the spoon budget. So every week you load up your grocery cart with frozen microwave meals, because that’s all you have the spoons to prepare. They’re bland and unhealthy and expensive, but you just don’t have the spoons to cook for yourself.

To most people, these examples might seem silly. How hard could it possibly be to just go to the store or make a phone call? But just like Christine’s disability makes tasks as simple as getting dressed or taking a shower a challenge, being neurodivergent often means that tasks which are trivial to a neurotypical person can be daunting.

People with disabilities which aren’t obvious to the casual observer—what we call “invisible” disabilities—often face judgment and discrimination from people who don’t understand what it’s like to live with their disability. People with invisible disabilities are regularly forced to justify themselves and often aren’t believed when they explain that their disability hinders or prohibits them from doing something.

If someone tells you they can’t do something or need to do something differently because of their disability, believe them. Instead of demanding justification or passing judgment, offer support and accommodation wherever you can. That’s what being an ally is about.