What Traveling to Europe Taught Me About Ableism
March 13, 2017 | Posted in: Ableism
The majority of my chronically ill life has been sheltered, encapsulated by the tiny group of people who love me most. These are the people who’ve done the hard work of learning what loving me looks in this time and space. They’ve learned my body’s rhythms and queues. For the most part, they come into our times together eyes wide open. They know we may very well spend our day together with me in pajamas on the couch barely able to string together coherent sentences, or if we are ever so lucky, I might brush my hair before we venture out to the local Olive Garden.
These are the friends who see me at public gatherings and text me later to say, “I hope you’re getting some rest now and you felt as good as you looked this morning.” They understand things aren’t always what they seem. They know what often lies beneath the plastered smile. They have a good handle on when to kindly suggest the ER, when to let me medicate and take a nap, and when to clear the way for days of recovery. Over years of doing life with me and asking thoughtful, sensitive questions, they’ve become experts in loving the chronically ill.
Stepping outside of this circle to take the plunge across international waters for the first time was amazing, terrifying, exhilarating, eye-opening, and even heart-breaking at times. While breathing in new cultures, history and stunning architecture were truly a dream come true, the reality of invisible illness slapped me across the face.
Outside of my cocoon of safety, phrases like, “It’s just a few more blocks” or “It’s not much farther” and “We can just grab a train” burned in my ears seemingly non-stop.
I’m in several chronic illness and disability groups where the concept of ableism is discussed on a regular basis with a fair degree of fury. I’d never fully understood it. What is ableism? Click To Tweet I mean, I heard group members describe being shamed as “wasteful” for buying precut fruit when they suffered neurological disorders leaving them quite literally unable to cut fruit. And yet, it had never quite clicked. The idea an “able” person had no concept somewhere out there, someone could not cut fruit never fully sunk in.
At least, it didn’t until I stood on a street in a foreign land, my body with a slight tremble from pain, even after I’d taken the maximum dose of the pain medications I save for the worst of the worst days and repeatedly heard words like, “ It’s only a few more blocks” or “we might need to run to catch the train” or “do you know how much it would cost to take a taxi?”
It was stunning. The idea that because I looked “good” I must feel “good.” The heartbreaking thing about invisible illness is, not only does it leave your illness invisible, but you, your pain, your journey. It comes with the assumption, “If my able body can do this, surely yours can, too.”
Oh friends, ableism is a thing, and it makes your friends feel quite unseen and a bit like gum stuck to the bottom of your shoe- a nuisance, run over, a sticky pollutant you can’t seem to get rid of.
I know there are mean-spirited people in the world who seek to hurt others on purpose, I do. And yet, I can’t help but wonder how many “isms” are founded in ignorance of what it is to live in another person’s skin. I can’t help but wonder how often I have unknowingly pierced the hearts of the ones I love most because I didn’t know. I can’t help but wonder how powerful discourse could be in many of these situations.
Yes, it is painful. No, no one wants to say, “These statements make me feel like gum on the bottom of your shoe.” But if we all come up better equipped to love, didn’t we all win?
If next time, someone understands, a taxi is about accessibility and not extravagance, didn’t we all grow? If next time, someone tells me what it’s like to live in their skin, and my eyes can be opened, if I can love their entire community better, didn’t we win?
Yes, hiding within my circle of people who already know how to love me well is easier. But what if telling the truth about “isms” equips us to love one another better? Let’s take brave, loving steps, shall we?