Pretty wheelchair girl

“Of course, the reality is a middle ground, where disability is both a beautiful part of my identity and culture, and the most difficult part of my life. I’m always open about this complexity on public platforms. But even that honestly sometimes feels like I’m putting on a show, like I have to perform being a very specific type of disabled person who’s always loud and proud while still being raw and real.”
-Emily Ladau – Words I Wheel By

Learn more about Disability Pride here:
https://www.forbes.com/sites/andrewpulrang/2021/07/15/5-questions-to-think-about-this-disabilitypridemonth/?sh=53ed364a1417

Disability pride is something that comes pretty easy to me. And by “comes pretty easy” I mean I literally feel pride, in my experience with disability, most of the time. I have a VERY visible disability… and whenever I say that, or talk about disability, I always put that VERY in there… I’m very disabled. I have no functional use of my arms or my legs. I mean, I wish my disability wasn’t the first thing that people see… but I’m operating a 400 pound power wheelchair with my face. It’s noticeable.

It’s also… pretty bad ass. I’ve been drawn to counterculture since middle school, and have spent a good chunk of my life actively trying to look different with hair color, make up, tattoos, and clothing. Plus, I live in rural Alaska where, to some, actively trying to look different is considered a sign of rebellion. So when this young rebel suddenly acquired a very visible disability, I didn’t and haven’t experienced shame in sticking out.

However, my disability experience encompasses so much more than the way I look. And this is where I really identify with Emily’s words on “the reality is a middle ground.” How do I go about adequately expressing the beauty and badassery, without foregoing the difficulty and darkness intermingled as well?

My go to, of course, is expressing the difficulty and darkness through comedy. I have found it to be an incredibly adaptive skill and really contributes to my sense of pride. It’s just easier to laugh hysterically at the humiliation of rocking piss soaked jeans, and finding clever ways to hide it, and having my DSPs blow dry my perineum in the bathroom without permanently damaging my vulva. That shit is hilarious to me… eventually. One time in college I had a MASSIVE diarrhea blowout minutes before it was my turn to present my Senior project on cognitive dissonance. I was wearing a white mini skirt and fishnets…OH, there was some dissonance. It took a while before I thought that one was funny.

But incontinence issues aside, which could arguably be funny all the time, depending on how you spin it, there’s a different deep, dark side that I have yet to find humor in, and is difficult to articulate… but something like: the power of touch.

Once, when my boys were about 5, they were playing outside in very tall grass and Daemon noticed an enormous spider crawling on his shoulder. I hear bloodcurdling screams, so I look outside and Daemon is running in circles, ripping his shirt off, and violently smashing it on the ground with a croquet hammer while screaming “mommy mommy mommy mommy!!” The screams turned to sobs and he ran inside, crawled up my wheelchair and into my lap and threw his arms around my neck and continued sobbing. I remember thinking ”what is this doing for him? I can’t even comfort my son over something as simple as a spider, what am I good for?” So many times I wanted, and still want so badly, to wrap my arms around them and squeeze them and ease their discomfort, like my mommy did for me time and time again. Daemon is 18 now and has the most glorious long, healthy flowing hair that reaches his lower back. Before my spinal cord injury I was a hairdresser by trade, so my whole heart and soul have this constant, burning desire to style, and run my fingers through my sons beautiful hair.

There’s this deep loneliness in not being able to provide nurturing touch to those that I love… and as a mom and a lover, these roles are exceptionally challenging. But then there’s the flip-side as well… not being able to shield myself from unwanted touch from others. I cannot count how many times I’ve been “hug raped” by the classic well intentioned hyper-empath, slurking towards me with open arms and big stupid doe eyes while I’m chanting “no thank you” in every tone that I think might be perceivable to the mammalian ear. UUUUGGH. Hate it.

So, this being disability pride month, commemorating the signing of the ADA, and the work and pride of so many disabled bad asses that came before me, I’m really attempting to take this time to reflect on my own sense of pride, why it exists and how it “comes pretty easy,” but then also reflecting on the profound struggle involved with being VERY disabled.

And thank FUCK for the comedic relief in the middle ground between the frustration and the fabulous, because even though I have yet to find humor in my own experience with nurturing touch, my sons NEVER miss a dark, cynical beat when and if their character is criticized… “My mom just didn’t hug me enough, I guess.”

So, cheers to disability pride and finding your own middle ground between the frustration and the fabulous.

Love,
Maggie