Disability Visibility: Part 3

To be disabled is, in this world, to experience a problem of body and/or mind so severe that it distinguishes a disabled person from a nondisabled person.

Whereas disability in the mainstream world focuses on what my body can and cannot do, I no longer think much about ability.

I looked to the internet to help me understand this more, but the blogs
 I was reading all wanted to tamp down the stigma of a chair by calling it a “device,” a “tool,” or “technology.”

My crutches and chair are not tools that compensate for my impairment.

The lope of a crutch feels to me as elegant as that of a gazelle; the push of a chair creates a glide akin to skating; a roll on the floor creates groundedness and a different understanding of the spine.

The lope of a crutch feels to me as elegant as that of a gazelle; the push of a chair creates a glide akin to skating; a roll on the floor creates groundedness and a different understanding of the spine.

I want to draw out the expressive capacity of disabled bodies and minds by acknowledging and actively drawing on the movement of impairment.

It was as much a promise to myself as it was a declaration of a mission. Since then, versions of this language have wound their ways into my artist statements, choreographic manifestos, and vision statements.

I didn’t know that other kids didn’t have to use catheters or that wearing diapers at that age wasn’t “normal.”

I didn’t know that other kids didn’t have to miss an entire day of school once a year to be poked and prodded by a roster of doctors and nurses.

I didn’t think I was “disabled enough” to let my disability hinder me.

To change these habits now would require another fifty dollars per month for the extra supplies at minimum—a price increase I cannot afford as someone who does not have access to comprehensive health insurance.

Incontinence is not just embarrassing. It’s a public health issue. And until we’re able to talk about it in a meaningful way, people who experience incontinence will always be isolated and putting our health at risk.

No pressure or anything, writer, just take the ephemeral and translate it onto a page.

The days when something just clicks and comes roaring down the pike inside my brain and it’s all I can do to get to my computer because it’s ready to go and that’s it.

A lot of folks equate the manic energy of being bipolar with the creative spark that drives artists to brilliance.

The therapist took one look at my behavior and referred me to a psychiatrist, a loud and overbearing man who listened to me talk a mile a minute for fifteen minutes, heard my symptoms, and pulled out a giant prescription pad.

So I took the drugs the doctor gave me and fell into the worst confluence of events you could imagine. Because the medication the doctor gave me did kill my creativity. It also made me sleep too much, have no emotions whatsoever, and gain tons of weight.

In the moments when I could feel something, it was the overwhelming terror of going back into that stupor once again.

So in 2002, in one of those moments of emotional lucidity, I made a decision to stop taking my meds.

I had bouts of going back on medication but would always stop for one reason or another.

I was afraid of going back to that medically induced haze I’d been in before.

More important, I’ve spent those years creating games and writing work I’ve made with deliberateness and careful consideration.

Before I acquired my first AAC device, which was a Touch Talker, my mom made picture boards where I could point to different words.

I also could vocalize simple words and could perform rudimentary sign language.

My mere presence
of erratic moving limbs
and drooling smile
used to be scrubbed
off the public pavement.

Ugly laws used to be
on many U.S. cities’ lawbooks,
beginning in Chicago in 1867,
stating that “any person who is
diseased, maimed, mutilated,
or in any way deformed
so as to be an unsightly or disgusting object,
or an improper person to be allowed
in or on the streets, highways, thoroughfares,
or public places in this city
shall not therein or thereon
expose himself to public view,
under the penalty of $1 for each offense.”

Ugly laws used to be
on many U.S. cities’ lawbooks,
beginning in Chicago in 1867,
stating that “any person who is
diseased, maimed, mutilated,
or in any way deformed
so as to be an unsightly or disgusting object,
or an improper person to be allowed
in or on the streets, highways, thoroughfares,
or public places in this city
shall not therein or thereon
expose himself to public view,
under the penalty of $1 for each offense.”

Any person who looked like me
was deemed disgusting
and was locked away
from the eyes of the upstanding citizens.

I am too pretty for some Ugly Laws,
Too smooth to be shut in.
Too smart and eclectic
for any box you put me in.