The Girl Whose Mobility Was Not A Constant Thing
There once was a girl who sometimes could stand for a short period of time.
[Two images of a disabled woman standing up, she is looking down at her colorful outfit and smiling] Sometimes her muscles would get tired, which was when she would sit in her motorized wheelchair, which she named Betty.
[Two images of a disabled woman sitting in her motorized wheelchair. In one photo, she is looking down at her outfit and smiling. in the second photo, she is looking at the camera and smiling.] And although a fine chair in some respects, her wheelchair Betty lacked the proper spine support that she needed to sit for very long, and so she mostly spent her time in her hospital bed.
[Two images of a disabled woman laying somewhat dramatically in a hospital bed with purple bed sheets. in one photo, there is a sign that reads “low spoons”] Sometimes, her muscles would become stiff and rigid and her body would become spastic. Like the rest of her mobility, it varied and was a spectrum. A range that could be anywhere from mild, moderate and severe (which is not seen in these photos, for no reason other than she wasn’t at that level when they were taken.) Sometimes she is not able to move at all.
Although the more visibly disabled she was, the more backlash she got from society, the stares, the gawking, the looks of pity and “oh, what a shame” as if she was tragic. She is not. Some would even point and laugh, but she knew that this was just ignorance (ableism) and that one level of spasticity wasn’t any better or less than the other. (Though it took her years to get to this point) “Fuck ableism.” she thought to herself and worked very hard not to internalize it. It was an on going process.
[Two images of a disabled woman sitting in her motorized wheelchair, her body is slightly spastic. In the second photo, her mouth is wide open as in mid spastic yawn, and there is a speech bubble with the text “*sings the song of my people*”] Here she is, somewhat spastic laying in her hospital bed, Avita. In her mind, she was going to use her spasticity to create images that would be a subversive mix of punk, protest meets radical modern dance, with unapologetic clunky-ness.
However, as her weekday PCA took this photo, she realized that in order to achieve that, she would need to not be spastic, as with her current state of spasticity, she really couldn’t move that much.
[two images of a disabled woman laying somewhat awkwardly in a hospital bed with purple bed sheets. her face is slightly perplexed as she is having a realization as her photo is being taken] “This is not what I had planned” she thought to herself. “Oh, processing disorder. You strike again.” And while society often told her that only constant and fixed levels of mobility were "acceptable”, and that bodies like hers, that varied depending on the weather, hormones, brain cysts & back spasms were odd if not highly questionable... she has spent many an hour plucking out the internalized oppression (ableism) which still trips her up now and then, but she grins for deep down she knows that her body (and the many bodies like hers) that do not exist to be their inspiration, that do not exist for able bodied consumption, that her body, like all bodies, are valid. about the project: Me and my weekday PCA (Lizzie who is disabled in her own right), decided one day to create a series of disability representation via photo shoots. In this set, all the photos are by Lizzie K, and feature myself. To see what happened when we switched places and I was behind the camera, click here.
