blunt force trauma to a paradigm | 2020

[content warning: ableism]

I.
over the course of five days in the fall of 2019
carmen papalia offered the training
open access: organizing accessibility from the grassroots
as part of jeanne van heeswijk’s trainings for the not-yet
at bak in utrecht
below you’ll find a selection of my thoughts on access, ableism and activism


II.
in a lot of ways
access
revolves around time
and personal temporality
i’ll approach this,
a recounting of the experience of the training
as well as the concept of time itself
as a circular process
the training started long before we shared a space and engaged with one another
and is echoing still
like a slippery bar of soap
i can’t get hold of the memory long enough
to accurately describe the affect of the training
the images i see bleed into images of
other times
other spaces
that are still lingering in my mouth
unable to form words
so i’m writing
as i back track
while looking toward this not-yet
that i am trying to imagine

III.
i sit on a chair in a dome inside a building
and listen to carmen papalia
as he introduces himself as non-visual artist
talks about his personalized black cane
and several art projects that revolve around making oneself known as a person with a disability in public space
shares how he identifies as a disabled person
that he subscribes to a disabled culture
a community
a community?
my ears are ringing
it is as if I have been struck across the face with great force
what community?
my body becomes rigid
in my head a voice
is reaching full screaming modea

disability identity?
that is absurd!
you’re sick
but that’s not who you are
that’s not who you are
that’s not who you would want to be
should want to be
that’s just your body
that’s not your identity
who you are is something else all together
come on !!!!!
pull yourself up by your bootstraps!
sure you have body stuff to deal with
who doesn’t?
but you should never utter the word disabled when talking about yourself
that’s a self-fufilling prophecy

as i try to ignore the yelling voice
i ask mr. papalia a question
how would you define a disability community?

he answers very politely
you know
the disability community
people coming together and supporting one another in different ways
you have disabled artists in the netherlands that are organized – right?

i smile somewhat crooked
because i don’t know of a community
or any other artists with chronic illness or disability
i make a note to research this

IV.
as i travel home by train at the end of that first day
it is clear to me that something has shifted
the systemic inequities that coincide with my experience of embodiment was validated
by someone sharing their story
and i wasn’t even required to make myself known as disabled

V.
in the following days
my brain continuously offers up
imperfect impressions of countless moments where
some well-intentioned individual thought they were complimenting me as they said
but i don’t think of you as someone that is sick

much like polaroids the memories become clearer given time
impatience can cause one to shake the frame
yet the memories develop best when left in piece
as advocates of radical slowness
the process takes time but does not disappoint

how brave you are
so vulnerable
to speak openly about being sick
now don’t mention it ever again

and as if i am interacting for the first time with these people staring
i immerse myself
in the ableist fantasies written all over this woman’s face
about what disability is supposed to look like
because surely you can’t be in a wheelchair
while laughing
while wearing red lipstick

wading through these past experiences
as if they are unfamiliar
showed me what strategies I’ve applied to relieve the pressure
of managing these anxious verbalizations
that aim to categorize bodies in
either / or
words wanting to stop me from unboxing myself
by sharing this non-secret
of a body’s fluid, unpredictable, uncontrollable, temporary, ability and mobility

VI.
the current state of isolation is fairly new to most
but a familiar one for me
now probably better than ever before
you can imagine why
i want access

like many of the other members of the invisible assembly that occupy bedroom (*1)
it simultaneously fascinates and angers me
that this no longer is grounds for exclusion
it should make one wonder why it ever was before

my body is my version of normal
as far as mobility, consciousness, or energy capacity is concerned
it is anything but the norm
but i can pass
as able-bodied
most of the time

and if i can’t
nobody would know
because i would not be visible
but in isolation

VII.
i am part of the sixty-five percent of people with disabilities
whose impairment has presented itself later in life
i became sick (*2) as a young adult
and as i had been a citizen of the kingdom of the well for so long (*3)
i fell hook line and sinker for the narrative of overcoming

the moment i became sick
everything and everyone was directed toward two things
having a diagnosis
and getting well
for me and so many others like me
the process of understanding why a body doesn’t function like one would expect4
is not that clear cut
nonetheless the objective is to return to the kingdom
as the ideological requirement is that everyone be as able-bodied as possible (*5) at all times
negate the stereotype of vulnerable and weak
and get on with it
consume and produce

over the past few years i seized trying to keep up with the herd
and have reformulated what productivity is for me
what my definition of success is
but there is always a pull
to give chase
and pressure to function at a higher pace
to work harder at overcoming


VIII.
this blunt force trauma to a paradigm
has been the most wonderful exhilarating baffling and painful experience
so much so that it has been almost impossible to remember
what i didn’t know beforehand and have learned since
papalia shared writers who influenced his thinking
so I could find the ones who had gone before6
this has enabled me to discover a community of scholars7
and start to understand the context and the culture that propagates oppression of the norm
so i can resist it
this allows me to participate in the production of knowledge
that reflects my own embodied embedded experiences

IX.
i learned that i am convinced that mine is not an body one should want
i learned that i am conditioned to aspire to pass as able-bodied
i learned that i internalized the oppression of able-bodied ideology
i learned that i fell for the myth that my disability can and should be overcome, at every cost
i learned that i need to resist dominant nondisabled perspectives on space and time
i learned that i refuse the practice of defining disability because it is a practice of power
i learned that my privileged position of having a white body
and an invisible disability with a mobility that is fluid8
has allowed me to not identify as disabled
i am unlearning ableism
as far as credibility
in relation to a politics of visibility and perfect attendance
micro-aggressions
and institutional trauma
it is not my responsibility to perform disability
in order for you to take me
my disability identity or my needs
seriously

i am going to practice gratitude
for the knowledge my complex embodiment offers me
and for the effort my body continuously puts forth

X.
i am a member of a category of people
that don’t gather together in one place for one purpose
because our needs, abilities, capacities, mobilities, and energies are so personal
our bodies can’t be taken for granted9
able-bodiedness is but a temporary state
the knowledge that sick and disabled people have
about isolation
about self-care
about adapting to plans that constantly need to be revised
is of great value in times where the need to imagine an otherwise is greater than ever
so let us imagine the not-yet
as a spacetime
where we have found ways for our bodyminds to gather
fellow invisible citizens
let us start organizing ourselves
in solidarity with all those that subscribe to challenging the norm