By Shelby Smallwood-Brill
As a woman who uses a rollator most days, sometimes it’s hard to explain to people that I’m kind of disabled, kind of not.
When curious little kids ask why I’m using a walker with wheels just like their grandma, I usually tell them I hurt my leg. It’s easier than explaining years and years of complicated mishaps and surgeries that lead to scar tissue on my spinal cord, which causes my legs to super tight all the time. Kids don’t want to hear that, and frankly neither do most adults.
Sometimes the wicked part of me wants to tell kids that I didn’t eat my vegetables when I was a kid, and now I walk like this – just to freak them out. The thought of it makes me laugh, but I’m not sure how well a joke like that would be received by parents, so I usually bite my tongue. If a child presses me for details, I usually say I was in a car accident (I wasn’t) or hit by a drunk driver (that’s a lie, too). Why? Because kids understand an accident and are able to move on once they understand why I’m using a walker. If I try to tell the truth, I can see their little eyes glaze over as their brain gets caught in a limbo state of not understanding, and with that, confusion about what they should say or do around me. Now that I think about it – that happens with grownups as well.
The human brain naturally puts people and things into categories to understand and process them efficiently. Craig McGarty discusses the importance of social categorization in his article featured in the Oxford Research Encyclopedia of Psychology. He discusses how we make sense of the world by using categorization. Social categorization influences how we view ourselves and those we interact with. We use social categorization to figure out relationships between people and groups, and how we fit in to those groups. We use categories to predict behavior, anticipate needs, figure out who will see eye to eye with us and who we’ll get along with.
So, when a kid is confused about why I need a walker, it’s because they don’t know what social category to put me in. You and me both, kid.
A tomato is technically a fruit but feels like a vegetable. When it comes to disability, I sort of feel like a tomato. I don’t use a wheelchair, so I don’t fit the classic image of a person with a physical disability, but I do walk with crutches or a rollator, so I don’t fit in with the 100 percent able-bodied group anymore.
Recently I came across the term, “spoonie,” that describes someone who relates to spoon theory. I love how this label helps sum up so much complex information in one word. Similar to “foodie” or “gamer,” you get it with one word.
Spoon theory was coined by Christine Miserandino back in 2003, and the term has been adopted by “spoonies” ever since to describe the physical and mental energy expenditure required to live in a physically disabled body. You start your day with a certain number of spoons, and you must plan your day accordingly. Wake up, 1 spoon. Go to work, 5 spoons. Pick up your kids, make dinner, help with homework… You get it – they take all of your spoons.
The frustrations of running out of spoons too quickly can be similar to counting calories or using a cell phone with a battery that dies too quickly. It doesn’t necessarily need to be spoons that represent your daily energy share – some people think of it in terms of money or points. Either way, you need to be smart and plan for the unexpected things that life throws at you. Living this way makes it hard to be spontaneous, even if that’s your nature. A friend who asks if you want to go to happy hour after work usually gets turned down because you haven’t allocated enough spoons for the added energy. If you were to go to happy hour, you wouldn’t have enough energy, for example, to get up the next morning and go to work.
What I appreciate about spoon theory is that it gives a visual representation of the concept of once your energy is spent, you’re done. Period. Sometimes that can be hard to communicate, and having a visual aid is helpful.
Although many scoff at applying labels to groups of people, I find that it’s a great way to grease the wheels of conversation and lead to a faster connection with others.
Labels are also great when you need to search for things that interest you online. Try searching for “disability” vs “learning disability” and you’ll see what I mean. Both human nature and Google love segmenting people into categories, and I’m fine with that.
Disabilities can be divided into broad categories like physical or developmental, for example, but once you try to get more specific, things get murky. As people with disabilities, we’re all like little snowflakes with our unique issues and circumstances that make us different than your average person without disabilities. I understand the spirit behind putting people first, and that labels are meant for jars, not people. However, as someone who doesn’t quite fit into any existing labels, I find myself wishing I had one. People who have a label for their disability have an easier time finding each other and becoming a supportive tribe.
I can’t be the only one that feels this way, right?