Someone brought up at the Spoonie Collective that we had used interesting language.
We chose phrases like “struggling with” or “living with” illness. We also spoke a lot about self-compassion and even empathy for the illness inside of us. She noted that her prior interactions with people had included more aggressive language like “fighting” illness, or being a “chronic illness warrior.”
We chatted for a while to try to unpack this phenomenon. I don’t remember the whole conversation, but what stuck with me the most was the idea that war terms don’t actually fit -- in war, you either win and get to go home, or you lose and it’s over. In our cases, there’s rarely a win. We don’t get to just go home and live the rest of our lives in peace. But neither do we lose, die, or give up.
This may seem like a simple, unimportant difference, but I do think there is significance in seeing your body as something that is struggling along side you, that neither of you is giving up, but also acknowledging that the goal isn’t actually to win, and that’s ok.
At work, I think a lot about what language to use, because it sends very direct messages to students. We are currently trying to rethink aspects of our school culture and to be more intentional about what we hang on our walls, etc. We had someone come run a staff meeting about supporting LGBTQIA+ students, and making sure our language and our space are inclusive. It was a wonderful workshop and the research clearly showed that words do matter. Students notice what words are on the wall, how we describe ourselves/each other, and what readings we assign in class.
While I was already pondering these concepts, I found this article about Stephen Hawking’s death. The writer has EDS and MCAS and picks apart some of the language being used in the media to describe Stephen Hawking’s physical condition. I don’t 100% agree with everything, but it did resonate in general and is worth a read.
The thing is that, yes, disabilities make a lot of things harder, but I agree with her assessment that often it would not be so bad, given the right accommodations. The problem is that our society has a twisted view of disabilities (even in the word itself) and can be more inhibiting than the actual condition itself. And by calling it “disability,” you’re ignoring the fact that different physical (or mental, emotional, learning, etc) experiences aren’t always simply a barrier or a gift -- they can absolutely be both.