[metallic tapping]
[footsteps and a door closes]
It was soon after I had a panic attack at
the complex pain clinic that I knew
I needed to plan for my next emergency
hospital visit.
I was filling out an intake form
and the questions about the
effectiveness of my care
recalled a troubling experience;
the time when an emergency room doctor
refused treatment because he thought
I was seeking drugs.
But it wasn’t the pain–or even
the thought of not being able to
advocate for myself–that
left a pit in my stomach.
It was the failure of trust
in my most desperate moments,
when I had no choice but to trust health
professionals who were more bound
to protocol than care;
From invasive procedures
that weren’t explained to me,
to the times when I had to convince staff
that I was a sickle cell patient
even though I was obviously suffering.
It was the build up of trauma
from these episodes that eventually
convinced me to write five short
paragraphs that articulated
my position on accessibility.
My first vision of Open Access
was a place where I could rest
and find comfort during a health crisis;
but still, it didn’t account
for my entire experience.
From the time I started practicing as an
artist I struggled with the fact that
vision wasn’t my central reference point.
I held space for myself by
resisting language like “blind” when
what I really wanted was a community
that valued non-visual perception.
I needed the same supportive,
pain-informed environment as
a grad student but I wasn’t
open about my pain condition at the time.
This meant that I could focus on the
relationships between object, audience,
and place that were available through
my non-visual senses without
addressing my times in hospital.
It wasn’t long before I was waiting to
cross a busy street at the front of a
daisy chain of participants
who were shutting their eyes.
Still, I didn’t realize the full impact
of ocularcentrism until I told my friends
who identified as “blind” about my work.
Many of them had never been to a
museum, let alone considered
pursuing art practice.
The contemporary art landscape wasn't
organized so people like them could
represent themselves or share
their stories with the wider public.
Instead, the entire field
privileged visuality;
a tradition that not only repressed
unseen bodies of knowledge,
but excluded a non-visual culture
with its own history from participating.
In the 60s, activists in the disability
community characterized their plight
in a new way that got to
the heart of their circumstance.
Their actions gave voice to an embodied
experience that they knew intimately;
the feeling of being disabled,
not by their bodies, but by the
disabling attitudes and institutions
that restrained their agency.
Some went on to chain themselves to busses
others crawled up
government steps in protest.
When they fought for legislation
for increased access to public space, they
shouted “nothing about us without us!”.
This wasn’t a matter of accommodation.
It was a matter of survival.
Their limited presence in public life
went hand-in-hand with
limited influence and power;
resulting in policy that
positioned them as subjects rather than
agents with opinions about their needs.
They knew that it was an
underlying system of control
that enforced this order;
a system that measured their
bodies, minds, and behavior against
concepts of normalcy and standards
rooted in Western medical tradition.
It was the same system that was
responsible for forced sterilization
programs and the wholesale
institutionalization of their peers.
Open Access is radically different than;
a policy that temporarily removes
a barrier to participation for a group
with definite needs.
It acknowledges that everyone
carries a body of local knowledge
and is an expert in their own right.
Open Access relies on those present
what their needs are and how they
can find support with each other
and in their communities.
It is a perpetual negotiation of
trust between those who practice
support as a mutual exchange.
Open Access is the root system
of embodied learning.
It cultivates trust among those involved
and enables each member to self-identify
and occupy a point of orientation
that centers complex embodiment.
Open Access disrupts the disabling
conditions that limit ones agency
and potential to thrive.
It reimagines normalcy as a continuum
of embodiments, identities, realities,
and learning styles, and operates under
the tenet that interdependence is central
to a radical restructuring of power.
Open Access is a temporary,
collectively-held space where participants
can find comfort in disclosing their
needs and preferences with one another.
It is a responsive support network
that adapts as needs
and available resources change.
[metallic tapping fades]