For November 2018, I’m exploring different things people have said to me, then the internal thoughts those remarks stirred.
Today I had surgery.
Today I might write a wee loud.
I told every medical professional I met, from doctor to blood draw, that I’m on the autism spectrum, and I’m also sensory sensitive; so let’s make sure that’s on the table.
- No one was blindsided by an invisible disability;
- I did not need additional representation;
- I self-advocated as much as I reasonably ought to do, which is a skill I possess in spades, but not necessarily a communication barrier all autism spectrum folks can walk through;
Yet the lack of awareness in our culture still swallowed me into the belly of the whale.
Here’s the issue:
Three nurses, at different points, requested I “calm down” because I was stimming.
(And in fairness, two nurses, earlier in the process, were super cool. A 2/5ths victory.)
To paint a picture, I was crying and groaning after getting stabbed for my IV three-bloody-times, (aside: I can’t do blood,) and on the first and second attempts, two nurses thought to dig around and try to thread the needle for a time, while telling me…
So let’s also put on the table that pain, crying, fear, and groaning was why I needed to stim, and false praise of courage wasn’t doing me any favors (although I concede that might work for other patients).
The last kicker, and the reason I know it’s stimming on the line here:
The nurses were saying, “You need to calm down,” not when I started crying; not when I started groaning; but when I flapped the hand they were not currently poking.
Don’t think I don’t see y’all staring at my hand.
Don’t think I’m unaware you’re also staring at how I switch my stim to touching my fingers to my thumb, one finger at a time, counting backwards from a hundred (which, ironically, was a calming technique I learned from a meditation coach), and that it still wasn’t enough, because off you go saying:
“You need to calm down.”
Pull up a chair.
I’m already irked enough that I can’t hand-flap in a grocery store without confronting the shadowy glare of ableism.
I’m annoyed that, in most public settings, I’ve had to swallow the gooey pill of not making neurotypicals uncomfortable, (at least until Millennials become the elderly generation setting public standard,) because “it’s scary” to live in a world with so many differabled and/or disabled and/or [insert any non-white, non-male, non-Christian, non-hetero identity here], because we might introduce drugs into your community, terrorize your children, and spread our cooties all over your lawns.
But dealing with ableism in a hospital?
People, gather around.
We, as a society, should do better.
Yet I’ve become the angry woman ripping wallpaper off the edges of my drop-in-a-bucket blog, mostly because, while neighbors and coworkers and family and friends and professionals live unaware, I wake up each day knowing how incredibly lucky I am that I can even complain about this, horrified at my autistic brothers and sisters who endure ignorance without defense.
And I’m also pissed for personal things.
I’m horrified at the thought of this slowing my recovery. I’m not able to process the deeper emotions beneath my surgery, because first I have to pass through the allistic gates of privilege.
I’m not able to mentally prepare for getting wheeled into an OR because I’m too busy self-advocating.
Personal things like that make me mad, sure.
…Here, take my shoes.
Put them on.
Where should I feel safe, if not in an institution for treating people from sickness to wellness?
To complicate matters, when the nurses asked, “What do you need to calm down,” and I replied, “Stimming,” they looked at me blankly, so that I had to spell out:
I need to repeat self-stimulatory movements like hand flapping and wrist twirling to process an overload of pain.
I should not have to self-advocate this far.
I should not have to educate every person I meet about autism.
Good grief, give me my shoes back; I’m getting cold feet over my living arrangement.
Y’all have made me learn how to make you feel better long enough; time you start contributing to the bridge that maybe, just maybe, could close the gulf between us, don’t you think?
Time to crack open a book, read an article, listen to a YouTube from an actually autistic person, instead of…whatever you do on Thursday nights…?
Millennials will add disability and differability rights to our to-do list of “ruining society,” for those of you who continue to defend blind obstinance and privilege.
And I will fight that long, and that hard, if that’s what it takes to break through this callousness.
Want to break through, too?
Let’s say you want to not be this ignorant. Let’s say you want society to not be this ignorant.
If you’re on board, then for starters, we could, as an educated culture, add the term “stimming,” (and the reasoning behind stimming,) to medical terminology. To criminal terminology. To teacher trainings. To every person in an institution that serves human beings, from hospitals to schools to prisons.
Autistic people are 1 in 36 members of society, and most of us can’t self-advocate the way I do.
Get ableism out of our public spaces before a nonverbal or less fluent autistic person ends up lying in your hospital bed, sitting at your classroom desk, or heavens-help-us, cowering inside your police station.
Our society cannot learn to stop telling us to calm down fast enough.
Kourtnie has an MFA in Creative Writing from CSU Fresno and a BA in English from CSU Fullerton. When she isn't writing or making art, she's moonlighting as a professor at community colleges. Read her writing at Kourtnie.net or Wattpad.com/user/KourtnieNet.