on not disappearing

“I am disabled and proud. Yet I remain lonely… Why are there so few scholars with a disability? Why do nearly 70% of people with a disability remain unemployed? … where are my people? Well, most of us cripples live on the edge of poverty… Few of us are in meetings when decisions are being made that will directly impact our lives… Bipeds think they get to choose what is and is not accessible. Of course we are accessible. I hear this all the time. Bipeds don’t know what the world accessible means. I show up and cannot navigate the aisles in a given restaurant and only upon arrival do I learn the bathroom is located in the basement.

What can one do in the face of ableism? Never ever give in. Get on the bus. Get on the plane…. Expect every building on every university campus to be accessible. Demand inclusion. Fight the good fight for I know all too well the easiest thing to do is not go out. Not going out the front door will lead to social oblivion. Do not let the bipedal hordes win. I will continue to be audacious. To do the ordinary is to be audacious for we cripples. It takes guts to leave our homes for we know we are unwanted. We are an economic burden. Worse, utilitarian theorists think cripples like me should not exist… if I cared I could never leave my home. The world is just too gorgeous to abandon.”

bill peace’s words get me through a lot of bad days.

a dear friend & i went dancing and a stranger thanked me for being there & said she cried when she saw me. someone asked for a picture of me & was very confused when i said “no” & acted like it was a complete sentence. in his enthusiasm to get me a glass of water i was already holding, a stranger accidentally spilt water in my lap and then patted my thigh.

a dear friend & i went dancing and a stranger told me “yeah, break all the rules!” (they didn’t elaborate as to which rules we were breaking).

at a local queer Halloween party the security guards carried me in my wheelchair up several sets of stairs & then one of them had to call to unlock the elevator (locked “so that people don’t try to use it” she explained), the photog stalked me as per usual (esp at queer events), and a stranger grabbed my hands (taking them off my rims, which i was using) trying to dance with me.

my housemate & i were waiting to cross the rd right in front of our house, with an armful & lapful of groceries respectively, & a stranger leant out of her car window to ask if we needed help; we just needed her to keep driving so we could cross the rd; “oh, ok!” she said, “i know what carrying things is like!”

my university’s wheelchair stair lifts usually need a biped to operate them & either don’t work or need a key and in every building a different person has the key and none of them know who each other is – just build a ramp!!!! just! build! a ramp!

my osteopathy clinic can’t build a ramp because the building is heritage listed so i come around the back gate past a pile of bricks & plasterboard & a pitchfork (ACTUALLY) & then the back door & the staff bathrooms & three steep steps in narrow corners. the day after my first appointment my osteopath went out and bought a portable wheelchair ramp (which at that short notice must have been at considerable personal expense) and spent her weekend refreshing/relearning/learning about EDS, drove my transfer cane home when i left it at her practice bc she was worried abt me having to climb my stairs without it, listened to me, listened to me, gave me lists of GPs she trusted, wrote unprompted letters just in case the GPs were reluctant or ignorant, called a trusted neurosurgeon contact, called for copies of my MRIs & faxed them over, said she was worried, said i was forced to be very trusting, said i was strong, said i was in pain, ducks out of appointments to recheck her anatomical knowledge so as not to rupture my aneurysm, tugs my friends over to the next room for the sake of having an immediate comparison cervical spine, asked & wanted to hear the answers, said she would drive me to the hospital today if i needed it, said she hoped she’d be seeing me again in ten days.

i don’t want to disappear

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