This opinion piece is by John Loeppky, a disabled artist and freelance writer/editor in Regina. It’s part of a series called Taking a Sitting Stand, about disability issues — and is a partnership between CBC Saskatchewan and CBC’s Creator Network.
There is often an arbitrary distinction drawn between invisible and visible disabilities.
I apologize a lot (Thanks, anxiety and panic disorder) but there’s no apologizing for my wheelchair or my spasms. I’m lucky, in a way, that my cerebral palsy is obvious, at least if we’re face to face.
The effects of my other disabilities, especially those that aren’t overt, are harder to explain. When I’m bed-bound because the temperature shifts 30 degrees in two days, or I’m overwhelmed by the thought that I’ve failed every editor I’ve ever submitted a story to, it can be really difficult to effectively describe what I’m experiencing.
But just because my mental illness doesn’t show up on a brain scan, doesn’t make it any less of a reality for me; it just makes it much less obvious to others.
Author, mental health advocate and internet personality John Green speaks regularly on his Vlogbrothers YouTube channel about how challenging talking about invisible disabilities — in his case obsessive-compulsive disorder — can be.
“It seems to me that the stuff happening way down inside of us is difficult to talk about, partly because those experiences aren’t really accessible by the senses,” he says in the video “What OCD Is Like (for Me).”
“You can’t usually hear or see psychic pain and it’s difficult to describe without simile or metaphor … I can say what it’s like more than I can say what it is.”
I am of the belief that our invisible disabilities are not truly invisible in the way society traditionally weaves its narrative about body and mind. My panic attacks are exceedingly obvious to my wife, to my friends and to my family. They are only visible to those I trust, to those I let into this experience. The rationale behind not opening that door are many. Discrimination, shame, internalized ableism, and being too damn tired are just some of valid reasons not to open yourself up.
And so, explaining a disability, especially to those with whom you are less familiar, often feels like grasping at straws — or spoons.
Christine Miserandino came up with the Spoon Theory, a cutlery metaphor, in 2003 to describe how much energy it takes to live with a disability, in her case Lupus.
Here’s an example with some everyday tasks:
Here’s the problem: you only have so many spoons to use every day and there isn’t an expedited delivery system for more spoons in an emergency.
To complicate matters, I don’t start every day with the same number of spoons. Sometimes it’s 30. Other days, I have two spoons and they’re spent — fast. I can feel them just out of reach, teasing me when I could use that little extra boost to complete that email or reorganize my closet.
The number of spoons a task takes can shift day to day as well. Sometimes, most of my energy will be spent just getting ready in the morning. It may take two hours — with help — bathing and getting dressed.
Using spoons to visualize our energy output helps non-disabled people begin to grasp what we are going through. It also demonstrates that a lack of spoons is not a moral failing. We are not neglectful or lazy; we are in need.
It’s all too easy to exclude disabled people because of a sense of inconvenience, but that can leave us feeling unwanted.– John Loeppky
One of the other insidious ways ableism sneaks into disabled people’s lives is by slowly cutting us off from friends and family. It’s all too easy to exclude disabled people because of a sense of inconvenience, but that can leave us feeling unwanted. I know it can be frustrating when your friend bails on your birthday party at the last second, but they may be choosing between your party and being able to go to work the next day.
Don’t cut them out, don’t stop inviting them; listen to them and adapt as needed. The more you can support your spoonie friends, the better. Ask them about their energy levels and what accessibility issues they have. Plan events for accessible spaces and build in extra time so that it’s not a frantic dash to eat dinner or get to the movie. Less stress and fewer steps means fewer spoons are used, or at least that’s the hope.
Friendships should not be conditional on whether someone can drag themselves into your presence. Next time you’re struggling with your energy — disabled or not — maybe it’s time to look in your kitchen drawers for some understanding.