WEBVTT

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[metallic tapping]

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[footsteps and a door closes]

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It was soon after I had a panic attack at

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the complex pain clinic that I knew

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I needed to plan for my next emergency

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hospital visit.

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I was filling out an intake form

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and the questions about the

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effectiveness of my care

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recalled a troubling experience;

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the time when an emergency room doctor

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refused treatment because he thought

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I was seeking drugs.

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But it wasn’t the pain–or even

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the thought of not being able to

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advocate for myself–that

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left a pit in my stomach.

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It was the failure of trust

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in my most desperate moments,

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when I had no choice but to trust health

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professionals who were more bound

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to protocol than care;

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From invasive procedures

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that weren’t explained to me,

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to the times when I had to convince staff

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that I was a sickle cell patient

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even though I was obviously suffering.

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It was the build up of trauma

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from these episodes that eventually

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convinced me to write five short

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paragraphs that articulated

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my position on accessibility.

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My first vision of Open Access

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was a place where I could rest

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and find comfort during a health crisis;

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but still, it didn’t account

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for my entire experience.

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From the time I started practicing as an

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artist I struggled with the fact that

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vision wasn’t my central reference point.

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I held space for myself by

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resisting language like “blind” when

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what I really wanted was a community

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that valued non-visual perception.

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I needed the same supportive,

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pain-informed environment as

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a grad student but I wasn’t

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open about my pain condition at the time.

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This meant that I could focus on the

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relationships between object, audience,

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and place that were available through

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my non-visual senses without

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addressing my times in hospital.

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It wasn’t long before I was waiting to

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cross a busy street at the front of a

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daisy chain of participants

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who were shutting their eyes.

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Still, I didn’t realize the full impact

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of ocularcentrism until I told my friends

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who identified as “blind” about my work.

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Many of them had never been to a

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museum, let alone considered

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pursuing art practice.

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The contemporary art landscape wasn't

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organized so people like them could

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represent themselves or share

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their stories with the wider public.

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Instead, the entire field

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privileged visuality;

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a tradition that not only repressed

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unseen bodies of knowledge,

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but excluded a non-visual culture

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with its own history from participating.

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In the 60s, activists in the disability

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community characterized their plight

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in a new way that got to

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the heart of their circumstance.

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Their actions gave voice to an embodied

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experience that they knew intimately;

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the feeling of being disabled,

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not by their bodies, but by the

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disabling attitudes and institutions

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that restrained their agency.

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Some went on to chain themselves to busses

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others crawled up

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government steps in protest.

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When they fought for legislation

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for increased access to public space, they

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shouted “nothing about us without us!”.

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This wasn’t a matter of accommodation.

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It was a matter of survival.

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Their limited presence in public life

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went hand-in-hand with

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limited influence and power;

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resulting in policy that

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positioned them as subjects rather than

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agents with opinions about their needs.

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They knew that it was an

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underlying system of control

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that enforced this order;

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a system that measured their

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bodies, minds, and behavior against

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concepts of normalcy and standards

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rooted in Western medical tradition.

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It was the same system that was

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responsible for forced sterilization

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programs and the wholesale

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institutionalization of their peers.

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Open Access is radically different than;

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a policy that temporarily removes

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a barrier to participation for a group

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with definite needs.

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It acknowledges that everyone

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carries a body of local knowledge

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and is an expert in their own right.

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Open Access relies on those present

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what their needs are and how they

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can find support with each other

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and in their communities.

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It is a perpetual negotiation of

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trust between those who practice

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support as a mutual exchange.

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Open Access is the root system

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of embodied learning.

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It cultivates trust among those involved

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and enables each member to self-identify

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and occupy a point of orientation

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that centers complex embodiment.

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Open Access disrupts the disabling

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conditions that limit ones agency

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and potential to thrive.

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It reimagines normalcy as a continuum

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of embodiments, identities, realities,

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and learning styles, and operates under

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the tenet that interdependence is central

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to a radical restructuring of power.

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Open Access is a temporary,

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collectively-held space where participants

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can find comfort in disclosing their

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needs and preferences with one another.

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It is a responsive support network

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that adapts as needs

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and available resources change.

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[metallic tapping fades]