At the moment of being crushed by a car in my 20’s, I went from medically impaired with invisible disability, to being very visibly disabled. The images here are performance stills from a solo “happening” on the main square of central campus, University of Michigan. The last images are of a participatory iteration, this time an interactive community performance.
The character I/we embodied is “Waldo” from the popular, “Where’s Waldo” book series. Waldo defines flat and asexual. The man we scan for, and upon first glance and once found, begs us to flip the page. In fact, we notice nothing about Waldo but his distinctive outerwear, and some may notice his binoculars and cane. He is hypervisible. Where he is on the page, he jumps out. And he is sadly invisible, right there upon our sightings, just a token. Flat.
I began to require the use of mobility aids. From cane through motorized scooter, I gained a publicly “disabled” status. I have used the whole array of aids, and different days sometimes call for or allow for different measures. (Side note: this variability is a complication that can really be unsettling to people who do not live with illness and impairment. Just now with some self-inquiry, however, I realize that I’ve painted the “non-disabled” with one stroke. I’ve caught myself second-guessing a person’s need/right to use a disabled parking space, for instance. Perhaps it’s profiling we all do.
I was “disabled” before I needed mobility aids. I have been sick since toddlerhood. People would give me the look of death for occupying an accessible seat or parking space that I knew I needed. It is hard to have invisible illness. I spent my time seeking. I was looking for my own Waldo– a box to fit in that justified, rationalized, and organized my experience of being disabled without “looking the part.”
With the accident, after I started to use a cane I suddenly was accosted less for taking parking resources out of turn. I was also approached less for intelligent tasks, problem-solving, wayfinding. I ceased to be asked to coffee with post-lecture debriefs. I felt left out and invisible a lot.
I was also flirted with less (as in not at all). I “looked the part” of a disabled person, the very thing I had pined after so badly as an invisibly hurting and medically compromised child, for my pain and my needs to be seen and understood. Now I “looked the part” so well that I became a caricature of myself. Stuck in the wheelchair box, I was lost. My only identity felt as flat as if I were “that guy with the red striped shirt and hat, frumpy jeans and the wooden cane.” My 29 might as well have been 99. I felt feared, yes, and incapable. Dependent. Futile. Definitely un-sexy.
As I began to embody this visibly impaired status, I simultaneously lost attention that made me feel like a dynamic, alluring, flirtatious, sumptuous woman. I replaced that with what seemed to be expected of me: jovial, sweet, optimistic, funny and inspiring. But definitely, definitely not sexy.
As such, my sexuality ground to a halt. With walkers and canes and a fleet of mobility scooters, I felt noticed, but not as “whole” and physically desirable. Less than desirable, I felt feared, a project to be fixed, or fetishized for an inspirational story or snapshot of diversity. In a video accompanying this series, an edited documentation of the performance, I try summoning some sort of authentic attention. I am not just Waldo, I proclaim!
To complicate my first (solo) performance version of Waldo, I reclaimed sexy. I cut off his frumpy jeans and danced about booty-wiggling and red-striped top jiggling. I want to be visible as ME. In my futile cry for sexual noticing I don’t succeed with my sexy Waldo costume or the fanciful twirl of my cane. Nobody in the plaza (“diag”) pays a wit of attention still.
I don’t get my mate at the end. Trying be FOUND, I wave my flag high, perform all sorts of ways of being me, shout, start my own search party, and eventually try to find myself. The louder I get, I feel I am transgressing propper “disabled behavior” and disrupting expectations. I even feel myself begin to apologize.
At times I end up looking for a break, an “out.” I can’t HIDE either. I want the passersby to stop looking for me, the campus tour that situates me in my wheelchair in the promo-shot, unnamed “disabled-bluebox-wheelchair-girl.” Tired of looking to be seen, I just want to blend in. Perhaps I am imagining people are staring? I often dig it when kids stare in grocery stores, compliment my chrome, or even ask what’s wrong. Sometimes I stare at a skillful pair of legs, with a twinge of pining, and marvel at how they seem to move with ease and grace. Perhaps its marveling we all do.
Still, I’ve had at least enough explicit events and snap judgements articulated to feel and wonder. As I perform in life and art I feel like as soon as a passerby “finds me” they’ll claim me as their token and move to the next page. I get left out a lot. I’ll be left on page 29 wondering how to describe myself beyond the blah guy named Waldo with the striped shirt, blue jeans, awkward glasses, and a blah wooden cane.