0:00:00.889,0:00:15.506
[metallic tapping]

0:00:15.506,0:00:23.139
[footsteps and a door closes]

0:00:28.632,0:00:30.908
It was soon after I had a panic attack at

0:00:30.908,0:00:32.807
the complex pain clinic that I knew

0:00:32.807,0:00:34.904
I needed to plan for my next emergency

0:00:34.904,0:00:36.451
hospital visit.

0:00:37.804,0:00:39.684
I was filling out an intake form

0:00:39.684,0:00:41.494
and the questions about the

0:00:41.494,0:00:42.924
[br]effectiveness of my care

0:00:42.924,0:00:44.462
recalled a troubling experience;

0:00:44.462,0:00:46.274
the time when an emergency room doctor

0:00:46.274,0:00:48.034
refused treatment because he thought

0:00:48.034,0:00:49.414
I was seeking drugs.

0:00:51.024,0:00:52.812
But it wasn’t the pain–or even

0:00:52.812,0:00:54.469
the thought of not being able to

0:00:54.469,0:00:55.959
advocate for myself–that

0:00:55.959,0:00:57.360
left a pit in my stomach.

0:00:58.506,0:01:00.042
It was the failure of trust

0:01:00.042,0:01:01.814
in my most desperate moments,

0:01:01.814,0:01:03.634
when I had no choice but to trust health

0:01:03.634,0:01:05.294
professionals who were more bound

0:01:05.294,0:01:06.834
to protocol than care;

0:01:07.908,0:01:09.608
From invasive procedures

0:01:09.608,0:01:11.178
that weren’t explained to me,

0:01:11.178,0:01:12.939
to the times when I had to convince staff

0:01:12.939,0:01:14.534
that I was a sickle cell patient

0:01:14.534,0:01:16.478
even though I was obviously suffering.

0:01:17.997,0:01:19.928
It was the build up of trauma

0:01:19.928,0:01:21.846
from these episodes that eventually

0:01:21.846,0:01:23.725
convinced me to write five short

0:01:23.725,0:01:25.447
paragraphs that articulated

0:01:25.447,0:01:26.969
my position on accessibility.

0:01:28.501,0:01:30.262
My first vision of Open Access

0:01:30.262,0:01:32.165
was a place where I could rest

0:01:32.165,0:01:34.544
and find comfort during a health crisis;

0:01:34.544,0:01:36.074
but still, it didn’t account

0:01:36.074,0:01:37.704
for my entire experience.

0:01:39.295,0:01:41.289
From the time I started practicing as an

0:01:41.289,0:01:43.105
artist I struggled with the fact that

0:01:43.105,0:01:45.182
vision wasn’t my central reference point.

0:01:46.522,0:01:48.118
I held space for myself by

0:01:48.118,0:01:50.531
resisting language like “blind” when

0:01:50.531,0:01:52.868
what I really wanted was a community

0:01:52.868,0:01:55.052
that valued non-visual perception.

0:01:56.492,0:01:58.223
[br]I needed the same supportive,

0:01:58.223,0:02:00.057
pain-informed environment as

0:02:00.057,0:02:01.596
a grad student but I wasn’t

0:02:01.596,0:02:03.818
open about my pain condition at the time.

0:02:05.549,0:02:07.516
This meant that I could focus on the

0:02:07.516,0:02:09.899
relationships between object, audience,

0:02:09.899,0:02:11.893
and place that were available through

0:02:11.893,0:02:13.854
my non-visual senses without

0:02:13.854,0:02:15.882
addressing my times in hospital.

0:02:16.528,0:02:18.419
It wasn’t long before I was waiting to

0:02:18.425,0:02:20.555
cross a busy street at the front of a

0:02:20.555,0:02:22.358
daisy chain of participants

0:02:22.358,0:02:24.248
who were shutting their eyes.

0:02:24.732,0:02:27.443
[br]Still, I didn’t realize the full impact

0:02:27.443,0:02:29.973
of ocularcentrism until I told my friends

0:02:29.973,0:02:32.383
who identified as “blind” about my work.

0:02:33.745,0:02:35.960
Many of them had never been to a

0:02:35.960,0:02:37.848
museum, let alone considered

0:02:37.848,0:02:39.454
pursuing art practice.

0:02:40.710,0:02:42.832
The contemporary art landscape wasn't

0:02:42.832,0:02:44.978
organized so people like them could

0:02:44.978,0:02:46.692
represent themselves or share

0:02:46.692,0:02:48.512
their stories with the wider public.

0:02:49.545,0:02:51.615
Instead, the entire field

0:02:51.615,0:02:52.895
privileged visuality;

0:02:52.895,0:02:55.163
a tradition that not only repressed

0:02:55.163,0:02:56.985
unseen bodies of knowledge,

0:02:56.985,0:02:59.119
but excluded a non-visual culture

0:02:59.119,0:03:01.396
with its own history from participating.

0:03:02.496,0:03:05.106
In the 60s, activists in the disability

0:03:05.106,0:03:07.220
community characterized their plight

0:03:07.220,0:03:08.978
in a new way that got to

0:03:08.978,0:03:10.964
the heart of their circumstance.

0:03:11.274,0:03:13.588
Their actions gave voice to an embodied

0:03:13.588,0:03:15.586
experience that they knew intimately;

0:03:15.586,0:03:17.183
the feeling of being disabled,

0:03:17.183,0:03:19.025
not by their bodies, but by the

0:03:19.025,0:03:21.070
disabling attitudes and institutions

0:03:21.070,0:03:23.505
that restrained their agency.

0:03:24.504,0:03:27.266
Some went on to chain themselves to busses

0:03:27.266,0:03:28.773
others crawled up

0:03:28.773,0:03:30.767
government steps in protest.

0:03:31.510,0:03:33.488
When they fought for legislation

0:03:33.488,0:03:35.841
for increased access to public space, they

0:03:35.841,0:03:38.511
shouted “nothing about us without us!”.

0:03:39.483,0:03:41.976
This wasn’t a matter of accommodation.

0:03:41.976,0:03:44.493
It was a matter of survival.

0:03:45.510,0:03:47.977
Their limited presence in public life

0:03:47.977,0:03:49.532
went hand-in-hand with

0:03:49.532,0:03:51.182
limited influence and power;

0:03:51.182,0:03:52.714
resulting in policy that

0:03:52.714,0:03:55.140
positioned them as subjects rather than

0:03:55.140,0:03:57.785
agents with opinions about their needs.

0:03:58.771,0:04:00.350
They knew that it was an

0:04:00.350,0:04:01.986
underlying system of control

0:04:01.986,0:04:03.336
that enforced this order;

0:04:03.336,0:04:04.855
a system that measured their

0:04:04.855,0:04:07.110
bodies, minds, and behavior against

0:04:07.110,0:04:09.130
concepts of normalcy and standards

0:04:09.130,0:04:11.215
rooted in Western medical tradition.

0:04:11.765,0:04:13.527
It was the same system that was

0:04:13.527,0:04:15.419
responsible for forced sterilization

0:04:15.419,0:04:17.227
programs and the wholesale

0:04:17.227,0:04:19.145
institutionalization of their peers.

0:04:22.853,0:04:25.823
Open Access is radically different than;

0:04:25.823,0:04:28.073
a policy that temporarily removes

0:04:28.073,0:04:30.524
a barrier to participation for a group

0:04:30.524,0:04:31.791
with definite needs.

0:04:32.540,0:04:34.296
It acknowledges that everyone

0:04:34.296,0:04:36.271
carries a body of local knowledge

0:04:36.271,0:04:38.407
and is an expert in their own right.

0:04:42.409,0:04:44.691
Open Access relies on those present

0:04:44.691,0:04:46.464
what their needs are and how they

0:04:46.464,0:04:48.009
can find support with each other

0:04:48.009,0:04:49.024
and in their communities.

0:04:49.344,0:04:51.431
It is a perpetual negotiation of

0:04:51.431,0:04:52.874
trust between those who practice

0:04:52.874,0:04:55.776
support as a mutual exchange.

0:04:59.109,0:05:01.231
Open Access is the root system

0:05:01.231,0:05:03.216
of embodied learning.

0:05:03.216,0:05:06.316
It cultivates trust among those involved

0:05:06.316,0:05:08.291
and enables each member to self-identify

0:05:08.291,0:05:10.492
and occupy a point of orientation

0:05:10.492,0:05:12.870
that centers complex embodiment.

0:05:16.830,0:05:19.240
Open Access disrupts the disabling

0:05:19.240,0:05:21.387
conditions that limit ones agency

0:05:21.387,0:05:22.737
and potential to thrive.

0:05:22.737,0:05:25.600
It reimagines normalcy as a continuum

0:05:25.600,0:05:28.379
of embodiments, identities, realities,

0:05:28.379,0:05:30.701
and learning styles, and operates under

0:05:30.701,0:05:33.038
the tenet that interdependence is central

0:05:33.038,0:05:35.363
to a radical restructuring of power.

0:05:39.789,0:05:42.138
Open Access is a temporary,

0:05:42.138,0:05:44.438
collectively-held space where participants

0:05:44.438,0:05:46.492
can find comfort in disclosing their

0:05:46.492,0:05:48.930
needs and preferences with one another.

0:05:50.048,0:05:52.038
It is a responsive support network

0:05:52.038,0:05:53.313
that adapts as needs

0:05:53.313,0:05:55.483
and available resources change.

0:05:59.955,0:06:14.888
[metallic tapping fades]