Open Access: Claiming Visibility, Installation Version

[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]