Part of a Whole

My name is Nicolas Steenhout.
I speak, train, and consult about inclusion, accessibility and disability.

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Fatigue, Pain, Assumptions, And The Spoon Theory

I just read a very touching "coming out" from my friend @HeatherHAL who discloses and talks about her impairment – "ongoing cumulative repetitive motion injuries that affect my arms, hands, neck and upper back". It takes some courage to do that. You can read her post on her website.

Her disclosure came after a blog post on Shelterpop somewhat misrepresented her. Perhaps it was just a question of being taken out of context, I don’t know. Heather said that she doesn’t bother with scrubbing the metal "plates" under her stove’s elements. Instead, she purchases liners and when they get dirty, she changes them. Readers of Shelterpop have been interpreting that as not being clean nor hygienic in the kitchen, and assuming that Heather is a slob, which she isn’t.

Here we have a classic example of Able Bodied people not considering that people do things for a reason, and the assumption of lazyness of "slobbery" is often incorrect.

When you have a condition that causes pain, or fatigue, you develop ways to cope. You have to trade off. It makes perfect sense to me to use liners and replace them rather than spend precious energy and risk pain. And most people just are unable to relate to that. "Everyone should be able to scrub the stove", right? Well, no. And what makes it even more difficult for others to accept, much less comprehend, is that you can’t see it. It’s not like Heather goes around with a big sign on her forehead that says she’s in chronic pain.

The best explanation I’ve seen of what it’s like to live with fatigue is The Spoon Theory, by Christine Miserandino. It isn’t aimed at explaining chronic pain, but it easily adapts. I wish more people were aware of the Spoon Theory. Because I could more easily explain why when it comes to chosing between folding the laundry or cooking dinner, I’ll pick food every time, and too bad if none of my clothes are folded nicely. Too bad if people think that makes me a slob. Heather, I’m with you!

One thought on “Fatigue, Pain, Assumptions, And The Spoon Theory

  1. I get similar attitudes when I have to talk to people about finding a job. I tell I can’t stand for long periods because of issues with my feet that were made worse in a factory job and they they turn round and say “wait a second…you don’t have a job yet??? Why don’t you go apply at that just opened” they don’t seem to get the point that those jobs require standing and I can’t just put up with the pain for the sake of money. It took me ages even just to convince my parents that the pain I feel in my feet is genuine.

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