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♪ Opening theme music ♪

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Hello and welcome to this episode
of ArtsAbly in Conversation.

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My name is Diane Kollin.

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This series presents artists, academics,
and project leaders who dedicate their

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time and energy to a better accessibility
for people with disabilities in the arts.

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You can find more of these conversations
on our website, artsably.com,

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which is spelled 
A-R-T-S-A-B-L-Y dot com.

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♪ Theme music ♪

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Today, ArtsAbly is in conversation
with Malicious Sheep who is a

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multidisciplinary artist, a photographer,
a vocalist, and a community scientist.

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You can find the resources mentioned
by Malicious Sheep during this episode 

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on ArtsAbly's website in the blog section.

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Welcome everybody.

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Today I am with an artist called 
Malicious Sheep 

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and they are a lot of different things, 

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lots of different identity,
but a multidisciplinary artist and

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I will let them introduce themselves.

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Welcome, Malicious Sheep.

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Thank you so much.

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Yes, I'm Malicious Sheep.

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I am a non binary queer and multiply
disabled multidisciplinary artist,

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photographer and vocalist,
as well as a poet from rural Canada.

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I'm a disability justice advocate,
policy writer,

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community organizer for multiple
communities,

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and a kind artist that is short
for chronically ill, immunocompromised,

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neurodivergent, and disabled,
and I experience all of those identities.

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I am a chronic volunteer and I provide
peer support and artist support

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and I do all of this virtually as
I am immunocompromised 

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and quarantine is still very much on for me
and probably will be in perpetuity.

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I have no visual description to
share with you as is custom, as I exist

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as a somewhat tangible identity within my
artist community solely through my voice,

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my disembodied voice, but my identifying
profile picture I can describe for you.

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It is a macro photograph of
a small jumping spider nestled in

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a flowering and seed bearing portion
of a red root pigweed in autumn

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with tones of pinks and greens and this
photograph was captured by yours truly.

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This little spider friend followed me
around my garden the first year

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I seriously started to explore photography
as a medium and this photograph was

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the moment that I knew it would become one
of my favorite mediums

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because of its accessibility.

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Very good, thank you.

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So on your website there are many great
things that you are presenting

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and the first thing that I really saw was
your photography because your photograph,

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your photographic work explores
small details about nature, about plants,

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still lifes, something like that, and
it's really being in the eye of the nature.

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And I was wondering if you could present
this part of your work, but also

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some other parts of your works
that are related, such as painting and

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everything else you're doing.

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Sure, of course.
Yeah.

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So with my photographic process - 

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I'll give you a little bit of a backstory.

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Then the context will be
a bit more clear, I think.

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So.

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I went to school for
post secondary education for about a year

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before a lot of my health concerns
started to accelerate to the point where

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I experienced sudden and rapid wasting.

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Still undetermined as the cause of that,
almost 15 years on.

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But it left me unable to care for myself,
unable to do what I had traditionally done, 

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which was hyper realistic, detailed
paintings, as well as mixed media

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sculpture, lots of physical work.

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And that period of wasting and
being unable to care for myself

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lasted almost ten years.

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In order to get myself reengaged
creatively, I took it upon myself.

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I got a camera.

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So glad I did.

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And in my space in the yard of the
property, I made a goal for every day.

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I would go outside for as
long as I could tolerate.

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Be that 15 minutes or 4 hours.

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Whatever it happened to me that day,
I would photograph as much as I could.

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As soon as I got tired, I would sit down
for 15 minutes, I would rest, and then I

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would make my way back inside and then
study everything that I had photographed.

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Because a lot of my movement
was very slow, very deliberate,

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because I was being very aware of my own body.

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I was being very aware of
where I could and could not step.

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Nature kind of didn't mind me so much, so
I would always get all the little bugs.

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Like, usually a bug will fly away
if you get too close, or a squirrel

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will take off if you're too close.

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But I was definitely not a threat.

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And so I think that gave me an opportunity
to photograph the little bit more.

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And also because my world had
become so small, because I wasn't able

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to explore outward like I used to.

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Like I used to live in Toronto, I used
to run around all over the place and,

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you know, explore the city.

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At this point,
I was definitely not able to do that.

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I was barely able to access
the space around me.

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So when I did explore, I wanted
to take a look at the little moments

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that were often left unnoticed.

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Little scenes.

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I really enjoyed capturing
textures and repeating patterns.

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That's part, I believe, in myself for
the musical quality that I also have.

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I really love that patterning,
how it's appearing in nature.

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I love biomimetics as well.

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Things that look like or could be used in
real life, that occur in nature as well.

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A lot of my photographs have been
explorations of my symptoms

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as I'm experiencing them as well.

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So if I - I'm a synesthet, so
many types of synesthesia as well.

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Textures and pain are associated
in my brain, and so I wanted to capture

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colour palettes or textures that
were associated with the pain sensations

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that I was experiencing, because
I do have six different pain disorders.

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So there's a lot of variety there.

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But, yeah, a lot of my favorite things
were finding little scenes,

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little mating dances of spiders or
a bird feather that had fallen just so

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perfectly and was captured in
some sort of vines or, like,

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little things that if you weren't 
paying attention to them, 

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you would never see that they were there.

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And we have such busy lives, like,

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especially, like, having remembered
what it was like in the city.

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Like, there's just so much going on.

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There's so much going on in our heads.

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I wanted to just be very present with the space

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and understand it fundamentally, as

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my neighbour and my home and my friends,

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I wanted to really get a sense of 

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where I was sharing my space and how
the different individuals within

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that shared space were
interacting with one another.

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And over time, I have now developed,
as I've started to get stronger

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and be more able to spend more time
outside, I've developed a permaculture

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organic garden with many layers to provide
homes for all of the different critters

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and things in a way that
has grown over the last few years.

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I wonder, with synesthesia,
I know you're also a vocalist,

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so sound is important for you.

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And does this affect - when you're
taking pictures, are you thinking

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inside your creative process,

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are you thinking about the sound?

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Yes, very much so.

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So I'll usually
pretty much all day, every day.

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I have one earbud in one ear.

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I switch them back and forth
so that I'm balancing.

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I have one earbud in my ear,
and it will have music in it 

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and the other one, I'll be able to listen to
the ambient sounds,

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and I love doing this in nature because
I compare the music with my pain,

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and I compare my visualization
with my pain and explore that through

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the photography, but also
through the storytelling and the lyricism.

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Sometimes I'll pick something in
particular that will pair well with that,

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and then I will also sometimes
use my own voice as the secondary.

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So if I'm feeling like I need
to vocalize, I need to process something

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through vocals, I will do that
as I'm moving through the space.

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So sometimes I actually end up
calling a bunch of birds over,

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which is really nice. like some sort of
cartoon character or something.

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I've made many a friend with the birds.
The chickadees are my favourite.

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They like to sit on my shoulder
and follow me around the garden.

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Nice.

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Yeah.

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And you're also a community
scientist, so I think that that also

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contributed the exploration
of your garden, led you to that? or -

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Yeah. 
Exactly. Yeah. I.

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When my body was in a state that
could move around space

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more easily when I was much younger,
I would spend hours hiking, going through

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conservation authority areas and parks,
identifying things there.

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And so my photography at that point
was more documentarian to identify things

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and to be able to send little reports
to the conservation authorities

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about invasive species or about potential
endangered species that I had seen.

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And so having that framework and
enjoyment of science and then blending

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that with art, like, both of those two
focuses have always been there for me

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as long as I can remember I've 
always wanted to be an artist 

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because it's a way that I can
communicate that I can't -

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I feel like I can't do verbally.

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But also the trying to understand
things through science has always

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really fascinated me as well.

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I really excelled at both of those
in school and had actually applied to

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two different types of universities
for both of those and then had to pick,

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so I chose art.

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But in the end, I was only able to go for
about a year, so I had top grades.

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But, yeah, it was being able to.

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I'm also an autodidact,
so I'm able to really teach myself

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anything which is helpful.

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And
having that space outside of the regular

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framework of education,
like in a self directed,

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flexible, and accessible way,
I feel like I was able to 

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explore what I needed to explore in each realm,
to be able to blend them together in a way

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that has really benefited me through being
able to communicate outwardly about

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things that I'm experiencing or,
you know, disability justice, 

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or things like that.

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And then has lent into my.

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Also my community organizing,
which has been lovely.

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You also have access needs,
so how do you -

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How do you fit these access needs
in your creative practices?

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Yes.

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So I have many a condition,

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many a fluctuation in symptom expression.

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I have, like, an Alphabet
soup of conditions.

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So it is a lot to manage.

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So many of my access needs 
are dependent on what 

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symptom expression is 
occurring at that time,

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so with my painting, what I used to do was

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very high detailed paintings, and 

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I was unable to do that at a certain point 

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because I started to develop tremors,

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and I became very frustrated
with the output that I was creating

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because it was not what I knew that I
could do, aside from the tremors.

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And so it was very disheartening and,
like, a difficult grieving process

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that I had to go through for that.

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I switched to the photography because
it was a more accessible option to me.

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But what I end up doing, I have done for a
very long time, is because of my tremors.

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I have to compensate for them
while I'm taking the photograph.

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So in almost like a reverse syncopation,
I'm following the pendulum swing of where

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the tremor is and capturing it right
in the middle when there's clarity,

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which is difficult just in any
photography, but, like, 

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macro photography, especially because 
there's just so many details that could go

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unseen and uncaptured.

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So I do that compensation.

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I anchor my arm into my body, or I'm
resting against something physically

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to anchor that so that the
tremor isn't as significant.

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And now it has, um.

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It has become almost second nature for me.

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I'm kind of flowing and swaying
as I'm taking pictures. I kind of -

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I look a little bit strange, but, compensating 
for, like, the wind and my -

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And my body and trying to
capture that very still moment.

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But I did - Recently,

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one of my friends, a fellow photographer, 
asked me about my process

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because he knew about my hand tremors,
and he wanted to understand a little bit

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about why that wasn't in my work.

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Like, he couldn't see that in my work.

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And so then I took a little bit
of a mental, like, a self reflecting dive

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on that, of why I was trying to hide that
a little bit of internalized

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ableism to unpack.

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And so immediately I went out,
and it was the middle of the night,

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in the middle of winter.

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I took photographs of the moon, but I let
my hand tremors fly free, and I ended up

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capturing these really beautiful.

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They looked almost generative,
almost like paint strokes,

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photographs of the moon, where you can
see all of those tremors in full view.

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And it was very freeing.

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And I really want to incorporate
that more into my work.

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But, yeah, for other access needs, I feel
like, for me, like, I cannot leave home.

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I am ordered home by my doctor forever.

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Like, I cannot leave.

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So the only way that I can access
art community is to do so virtually.

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And so I really try to,
as a community organizer,

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connect people who I know are interested
in creating virtual spaces

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00:18:58,570 --> 00:19:07,913
and accessible spaces to help them
connect and then be able to facilitate

231
00:19:07,946 --> 00:19:16,154
their creation of those spaces,
as well as connecting disabled artists

232
00:19:16,188 --> 00:19:22,161
with those developers and those
other community organizers and things.

233
00:19:22,194 --> 00:19:32,070
So, yeah, most of what my experience
with the art world prior to the pandemic

234
00:19:32,104 --> 00:19:42,414
was simply not accessible to me,
either physically or

235
00:19:43,115 --> 00:19:46,852
in some cases, socially as well.

236
00:19:46,885 --> 00:19:49,888
I'm an ambulatory wheelchair user.

237
00:19:49,922 --> 00:19:51,790
I use a cane.

238
00:19:51,823 --> 00:19:53,892
I have.

239
00:19:58,830 --> 00:20:05,804
It's like, as I move my body,
as I move, different muscle groupings,

240
00:20:05,837 --> 00:20:10,909
regardless of where they occur
in my body, the weaker they will get.

241
00:20:11,677 --> 00:20:20,552
So a lot of - even just a car ride
to a gallery, first and foremost,

242
00:20:20,552 --> 00:20:25,190
would take a lot out of me, and then
my cognition would be down, so I wouldn't

243
00:20:25,223 --> 00:20:28,794
be able to as actively participate.

244
00:20:28,794 --> 00:20:35,567
But then most of the gallery spaces that I
was interacting with also had no ramp or

245
00:20:35,601 --> 00:20:41,873
were up or down a full flight of stairs,
you know, historical buildings.

246
00:20:41,907 --> 00:20:45,644
It was very tight and, like, no handrails.

247
00:20:45,677 --> 00:20:48,547
So, like, a lot of the spaces
that I was trying to access,

248
00:20:48,580 --> 00:20:50,082
I just physically couldn't.

249
00:20:50,115 --> 00:20:52,851
It was dangerous for me to.

250
00:20:52,884 --> 00:20:58,523
And then learning about my
immunodeficiency, that made it even more

251
00:20:58,557 --> 00:21:04,863
difficult, even prior to the pandemic,
because it is not something that

252
00:21:04,896 --> 00:21:10,636
people tend to see, because it's not -

253
00:21:11,169 --> 00:21:19,678
It wasn't as known as an issue until the pandemic.

254
00:21:19,711 --> 00:21:26,985
But then after the pandemic, my world
opened up in a way that it never had.

255
00:21:27,786 --> 00:21:31,523
Everybody switched to virtual
because it was the accessible option

256
00:21:31,556 --> 00:21:33,859
for everybody at that time.
Right?

257
00:21:33,892 --> 00:21:43,402
So a lot of spaces that I really
wanted to participate in, I finally

258
00:21:43,435 --> 00:21:45,203
could, and I thrived in them.

259
00:21:45,237 --> 00:21:51,243
So disability justice,
political organizing,

260
00:21:51,710 --> 00:21:57,549
things that I never would have had access
to otherwise finally opened up for me.

261
00:21:57,582 --> 00:22:02,587
And I decided to keep pushing
for that for other people.

262
00:22:02,621 --> 00:22:08,293
The positive side about this
pandemic is that it was able,

263
00:22:08,326 --> 00:22:13,498
it gave an opportunity to - 

264
00:22:13,498 --> 00:22:18,236
an opening to dialog with people 
who were used to

265
00:22:18,236 --> 00:22:21,406
always being outside at the office.

266
00:22:21,440 --> 00:22:29,448
And as disabled people,
we found a way to create accessibility

267
00:22:29,481 --> 00:22:34,419
with the digital tools that we had,
and that stayed after the pandemic.

268
00:22:34,453 --> 00:22:39,257
So that is, I am really thankful for that.

269
00:22:39,291 --> 00:22:45,030
To be able to connect with many people
all around Canada and the world

270
00:22:45,063 --> 00:22:50,435
from an office and create a
notion of accessible dialog.

271
00:22:50,469 --> 00:22:56,541
I really appreciate that, and I also
appreciate the fact that this is a tool.

272
00:22:56,575 --> 00:23:02,681
So when we are talking about
adaptations and access needs, there are

273
00:23:02,714 --> 00:23:08,653
a lot of access needs that we were able
to add with these digital connections.

274
00:23:08,687 --> 00:23:15,394
And now, as you said, some galleries
are not accessible for

275
00:23:15,394 --> 00:23:18,697
wheelchairs or mobility aids users.

276
00:23:18,730 --> 00:23:20,632
I am a mobility aid user.

277
00:23:20,632 --> 00:23:25,437
I'm a wheelchair user, and
I am confronted to that all the time.

278
00:23:25,470 --> 00:23:34,346
But now we have streaming,
we have possibilities of doing meetings

279
00:23:34,379 --> 00:23:40,786
with artists, or online exhibitions, or
just a visit of a physical exhibition

280
00:23:40,819 --> 00:23:47,692
that would then be an online visit
for people who cannot come physically.

281
00:23:48,160 --> 00:23:54,099
Yeah, the hybrid access,
I think, is the key.

282
00:23:54,132 --> 00:23:58,303
It is something that, in my community
organizing, I really try to push for

283
00:23:58,336 --> 00:24:05,577
as well, especially because the community
that I do organize for is a global one.

284
00:24:05,610 --> 00:24:12,918
So generally, if there's an event
like Art Basel, most people, 

285
00:24:12,918 --> 00:24:19,324
unless they live in the States 
or have a high income 

286
00:24:19,324 --> 00:24:22,227
or don't have other responsibilities

287
00:24:22,227 --> 00:24:26,731
that they can't accommodate for,
they just aren't able to go.

288
00:24:26,765 --> 00:24:35,207
Whereas with the hybrid
option, where there is a bit of both,

289
00:24:35,240 --> 00:24:39,845
it makes it so that, you know,
those folks who maybe in Australia

290
00:24:39,878 --> 00:24:45,617
who can't make it to the US,
or someone like me who is multiply

291
00:24:45,650 --> 00:24:48,553
disabled and cannot leave home,
can still participate.

292
00:24:48,553 --> 00:24:53,892
And I think it's just the
most beautiful thing I really do.

293
00:24:53,925 --> 00:24:58,396
I was also wondering if you have
developed other -

294
00:24:58,396 --> 00:25:02,267
in the research of

295
00:25:02,567 --> 00:25:07,639
accommodating your access needs, 
do you have -

296
00:25:08,440 --> 00:25:13,111
Did you use special tools or 
did you try to use, I don't know, 

297
00:25:13,111 --> 00:25:15,814
a stabilizer for your camera, for example, 

298
00:25:15,814 --> 00:25:24,289
or something to help you 
being more in your garden

299
00:25:24,322 --> 00:25:28,093
or a longer time, for example?

300
00:25:28,126 --> 00:25:36,902
Yeah, actually, not the stabilizer, 
but the garden itself.

301
00:25:36,902 --> 00:25:46,111
I slowly established layers to the garden,
as well as seating sprinkled throughout,

302
00:25:46,144 --> 00:25:50,215
so that there would be somewhere
for me to sit, as well as smooth paths.

303
00:25:50,248 --> 00:25:56,021
So depending on my symptom expression
of the day, I could either use my chair

304
00:25:56,054 --> 00:26:02,494
or my cane, or walk freely,
but still need rest periods where I would,

305
00:26:02,527 --> 00:26:06,731
you know, take 15 minutes to rest 
and then decide whether or not 

306
00:26:06,731 --> 00:26:09,267
that was enough for the day or if I could continue.

307
00:26:09,301 --> 00:26:14,973
But there was, you know, every -
I believe it's about every 15ft or so,

308
00:26:14,973 --> 00:26:22,247
there is somewhere to sit in those gardens, 
be it a stump or a rock or

309
00:26:22,280 --> 00:26:25,450
something, there's something to sit on.

310
00:26:25,483 --> 00:26:29,287
And so that's really helped.

311
00:26:29,321 --> 00:26:37,963
As well as providing things
like shade for myself through

312
00:26:37,996 --> 00:26:46,972
specific types of planting and
organizing of how the gardens lay,

313
00:26:46,972 --> 00:26:50,809
like where the sun exposure is going to be,
because I'm also very sensitive to that.

314
00:26:50,842 --> 00:26:53,211
So there's a lot of -

315
00:26:53,244 --> 00:26:59,951
A lot of different considerations
and I've applied them all and I feel like

316
00:27:00,285 --> 00:27:08,226
it is a beautiful, accessible space
for me where I can play and create

317
00:27:08,760 --> 00:27:16,067
without having to spend a lot of
my cognitive energy on self protection.

318
00:27:16,101 --> 00:27:21,673
I can be a little bit more relaxed
and really dive into my work.

319
00:27:21,673 --> 00:27:28,213
It seems like a great place to rest and
see the seasons change in nature.

320
00:27:28,279 --> 00:27:30,281
Absolutely.

321
00:27:30,315 --> 00:27:31,716
So do you have -

322
00:27:31,750 --> 00:27:38,356
Speaking of exhibitions,
do you expose your work?

323
00:27:38,690 --> 00:27:48,066
So I had a couple of opportunities through
this digital community that I'm part of.

324
00:27:48,099 --> 00:27:50,201
Digital art community.

325
00:27:50,235 --> 00:27:54,539
I've had a few opportunities
to exhibit my work.

326
00:27:54,572 --> 00:28:02,914
One was at NFT NYC in 2023,

327
00:28:02,914 --> 00:28:07,185
which was great, as well as

328
00:28:07,585 --> 00:28:13,024
with a project
from The Selfie Institute called

329
00:28:13,058 --> 00:28:22,133
Throwing Digital Bricks which is a
queer digital art exploration

330
00:28:22,167 --> 00:28:26,704
where I submitted a piece
for consideration which was accepted,

331
00:28:26,738 --> 00:28:30,575
called Aubergine in Repose.

332
00:28:30,975 --> 00:28:36,581
Most of my photographs - a little side 
tangent again, this is how my brain works.

333
00:28:36,581 --> 00:28:42,220
Most of my photographs
are unedited and unstaged,

334
00:28:42,220 --> 00:28:46,024
photographed in situ, 
without any artificial lighting.

335
00:28:46,057 --> 00:28:52,831
I would rather wait for the lighting
to be correct than to light it falsely.

336
00:28:52,864 --> 00:28:58,470
And I would rather capture
the raw moment than change it.

337
00:28:59,437 --> 00:29:08,213
Because as a multi identity
disabled person, 

338
00:29:08,213 --> 00:29:13,184
erasure is a really big component 
of our experience.

339
00:29:13,218 --> 00:29:18,356
So I don't want to edit
my work or alter it.

340
00:29:18,389 --> 00:29:20,892
I want it to be as raw as possible.

341
00:29:20,925 --> 00:29:25,563
Especially in a world
now that everything is edited.

342
00:29:25,630 --> 00:29:29,167
There's so much - 

343
00:29:29,167 --> 00:29:31,769
there's very little

344
00:29:32,170 --> 00:29:37,509
raw in what we are absorbing

345
00:29:37,542 --> 00:29:40,545
visually nowadays through art.

346
00:29:40,578 --> 00:29:45,884
And so for me, it's really
important to have have that.

347
00:29:47,085 --> 00:29:55,627
I feel like a lot of when I am
creating it in that way, it helps

348
00:29:55,660 --> 00:30:01,733
to affirm myself that I don't need to
change, that I don't need to be changed

349
00:30:01,766 --> 00:30:05,503
and to honor my own history.

350
00:30:05,770 --> 00:30:10,675
But then back to the piece, Aubergine
in Repose, that is one of the very few -

351
00:30:10,708 --> 00:30:19,417
There's only two photographs
that I've published that have been

352
00:30:19,450 --> 00:30:21,920
staged and artificially lit.

353
00:30:21,953 --> 00:30:28,860
They're both still unedited, but it is
an aubergine as well as some tomatoes,

354
00:30:28,893 --> 00:30:33,631
some oranges and pomegranates.

355
00:30:33,665 --> 00:30:40,505
The aubergine itself is placed on a
velvety green tasseled cushion.

356
00:30:40,538 --> 00:30:43,474
It is meant to emulate -

357
00:30:43,474 --> 00:30:50,715
Visually it's meant to emulate the style of
a Renaissance oil painting

358
00:30:50,748 --> 00:30:58,223
in tone and quality and content and forms,

359
00:30:58,223 --> 00:31:06,464
and to express a lot about not only

360
00:31:08,366 --> 00:31:15,573
conversations about
disability and that rest is not valued

361
00:31:15,607 --> 00:31:24,716
firstly within our society,
unfortunately, it should be, but also

362
00:31:25,783 --> 00:31:34,325
generally, when there is a painting
in that style, generally it is of a white

363
00:31:34,359 --> 00:31:40,531
woman, nude, created for the male gaze.

364
00:31:40,565 --> 00:31:47,538
And so I wanted to create something that
uses the avoidant language that we often

365
00:31:47,572 --> 00:31:53,478
associate with out groups such as queer
communities or disabled communities,

366
00:31:54,545 --> 00:31:57,849
and as well as with sex.

367
00:31:57,882 --> 00:32:04,822
The emoji - the aubergine emoji

368
00:32:05,590 --> 00:32:17,769
is phallic and is in an attempt to avoid

369
00:32:17,802 --> 00:32:21,172
outright stating certain things, right.

370
00:32:21,205 --> 00:32:29,681
So I wanted to utilize that imagery
to create a new form, a new

371
00:32:30,114 --> 00:32:34,719
focus, and to shift the -

372
00:32:35,920 --> 00:32:39,958
I wanted to shift the gaze from -

373
00:32:40,325 --> 00:32:46,531
the male gaze to something that was
a little bit more open for 

374
00:32:46,531 --> 00:32:52,670
the female gaze, as well as 
the trans and nonbinary gaze,

375
00:32:53,571 --> 00:32:56,007
because I feel like that's very important.

376
00:32:56,040 --> 00:32:59,410
You kind of shift the perspective.

377
00:32:59,444 --> 00:33:05,550
And I've had a couple other
pieces that have been shown as well.

378
00:33:05,583 --> 00:33:15,193
There was one I took of a
sawfly larva eating a blade of grass,

379
00:33:15,226 --> 00:33:18,029
and it's called Devour.

380
00:33:18,062 --> 00:33:27,538
And that piece was also shown in New York
as part of an exhibition

381
00:33:27,572 --> 00:33:35,646
in 2023 during NFT NYC, which was great
because that's one of my favorites.

382
00:33:35,680 --> 00:33:39,417
Just from all of the detail
I was actually able to capture

383
00:33:39,450 --> 00:33:45,523
in the textures of that tiny little critter 
on a tiny blade of grass.

384
00:33:45,556 --> 00:33:50,895
Very proud moment, but yeah, a lot of -

385
00:33:50,928 --> 00:33:53,331
A lot of that.

386
00:33:53,598 --> 00:34:00,471
I like the fact that you're having
a lot of intersectionality in your work.

387
00:34:01,973 --> 00:34:06,844
Yeah, I think it comes with the package.

388
00:34:08,012 --> 00:34:11,649
I have to think about and process this
for myself, so I might as well

389
00:34:11,682 --> 00:34:14,152
communicate that through art.

390
00:34:14,152 --> 00:34:19,123
And I always really,
I find for me anyway, the -

391
00:34:19,157 --> 00:34:23,761
It is more interesting in the
intersection, in the collision,

392
00:34:23,761 --> 00:34:33,704
where things are 
blending together, or having,

393
00:34:33,838 --> 00:34:38,042
I don't want to say conflict, but like

394
00:34:38,076 --> 00:34:41,813
bumping up against each other
in a way that creates something new.

395
00:34:41,846 --> 00:34:46,918
It's like a liminal space. I really love exploring that, 

396
00:34:46,918 --> 00:34:51,522
how things can relate to one another, 
how things

397
00:34:51,522 --> 00:34:54,692
can be more than one thing at the same time.

398
00:34:54,725 --> 00:35:02,667
I really love creating that and then
utilizing those types of visuals to tell

399
00:35:02,700 --> 00:35:07,238
a story about that experience.

400
00:35:08,506 --> 00:35:12,743
You already mentioned it a little bit,
but I want to come back to the notion

401
00:35:12,777 --> 00:35:15,980
of accessibility in the arts.

402
00:35:16,013 --> 00:35:20,251
What is it for you as an artist
to be working on that topic

403
00:35:20,284 --> 00:35:23,488
of accessibility in the arts,

404
00:35:23,521 --> 00:35:28,426
in the intersection with other fields?

405
00:35:28,426 --> 00:35:35,466
Yeah. So generally when I'm talking about
disability justice or accessibility,

406
00:35:35,500 --> 00:35:38,369
I like to lead with -

407
00:35:38,936 --> 00:35:43,241
The antonym to disability is not ability

408
00:35:43,841 --> 00:35:50,314
nor disable to able,
rather it is to disable or to enable.

409
00:35:50,515 --> 00:35:57,321
And taking that mindset with you
as you try and solve for the access needs

410
00:35:57,355 --> 00:36:03,127
of others, I think really changes how
people approach it, because disability

411
00:36:03,161 --> 00:36:06,030
is not inherent to the individual.

412
00:36:06,063 --> 00:36:11,202
Right, we know this, but rather
we are disabled by society,

413
00:36:11,235 --> 00:36:13,804
systematically and socially.

414
00:36:13,838 --> 00:36:18,943
And so there's a difference
between hindering or helping

415
00:36:18,976 --> 00:36:21,245
or sidelining or supporting.

416
00:36:21,279 --> 00:36:27,818
So for me, accessibility in the arts means
enabling creatives to participate

417
00:36:27,852 --> 00:36:35,826
in whatever capacity I'm able to,
and whether that be in person or virtually,

418
00:36:36,160 --> 00:36:38,229
regardless of their access needs,

419
00:36:38,262 --> 00:36:43,167
regardless of equity status or
socioeconomic factors,

420
00:36:43,201 --> 00:36:46,571
the community collectively meeting them
where they are,

421
00:36:46,604 --> 00:36:50,808
and taking active and ongoing steps
to remove barriers,

422
00:36:50,841 --> 00:36:57,181
both physical and social,
as well as to use creative thinking,

423
00:36:57,215 --> 00:37:01,185
which as creatives we have 
an abundance of,

424
00:37:01,219 --> 00:37:05,723
to problem solve to meet the access needs
of each community member 

425
00:37:05,723 --> 00:37:09,160
as those needs are presented.

426
00:37:10,027 --> 00:37:13,097
Yeah, I've.

427
00:37:13,130 --> 00:37:22,239
I really think that there are ways
to do that that really don't take a lot.

428
00:37:23,207 --> 00:37:28,980
And I feel like a lot of the hesitance
from people that I've seen over the years

429
00:37:29,013 --> 00:37:35,486
is related to a fear that they're going
to do it wrong, that they're going to

430
00:37:35,519 --> 00:37:42,860
cause more harm if they are willing,
but they still won't work towards that.

431
00:37:42,893 --> 00:37:48,666
There is that fear
of being part of the problem.

432
00:37:48,699 --> 00:37:55,106
But as I always say, like,
bring disabled folks into the fold.

433
00:37:55,139 --> 00:37:56,607
We have ideas.

434
00:37:56,641 --> 00:38:00,111
We've been managing this
for ourselves for a very long time.

435
00:38:00,144 --> 00:38:05,383
We know the limits, we know
the possibilities, 

436
00:38:05,383 --> 00:38:09,420
and especially with all sorts of new technologies,
like combining people together

437
00:38:09,453 --> 00:38:13,658
who are often siloed apart, 
who don't often interact,

438
00:38:13,658 --> 00:38:21,032
like engineers and artists or,
you know, like in my realm,

439
00:38:21,032 --> 00:38:29,106
developers and artists and disabled folk
all coming together in a beautiful

440
00:38:29,140 --> 00:38:33,944
trifecta and solving a problem together.

441
00:38:33,978 --> 00:38:35,212
There is like.

442
00:38:35,246 --> 00:38:42,687
I find there is a cultural and
linguistic barrier for that to happen.

443
00:38:42,720 --> 00:38:45,923
But once it started and you've
got somebody who kind of 

444
00:38:45,923 --> 00:38:51,896
fits within all of those realms, like me,
it's helpful because 

445
00:38:51,896 --> 00:38:59,236
you can help translate for everybody until
that becomes a more of a shared language.

446
00:39:00,304 --> 00:39:05,810
Like my experience with all of
the developers that I know,

447
00:39:05,843 --> 00:39:07,578
a lot of them didn't.

448
00:39:07,611 --> 00:39:13,884
Unless you specifically go for
disability accessibility in technology,

449
00:39:13,918 --> 00:39:17,321
you're not taught about any of it.
Right?

450
00:39:17,355 --> 00:39:18,456
It's the same with everything.

451
00:39:18,489 --> 00:39:22,460
You're just not taught about it,
even though it affects everything.

452
00:39:22,493 --> 00:39:30,735
So I feel like combining people is
my favorite thing, bringing them together

453
00:39:30,768 --> 00:39:33,804
so we can make magic.

454
00:39:34,238 --> 00:39:36,774
But yeah, I feel like.

455
00:39:36,807 --> 00:39:40,644
Like, for me, a lot of
what's driven me to do this too.

456
00:39:40,678 --> 00:39:46,450
Cause like, there's obviously the
physical inaccessibility of being

457
00:39:46,484 --> 00:39:53,991
able to participate in spaces,
but also like applications for

458
00:39:54,024 --> 00:39:57,194
grant programs or residencies for me.

459
00:39:57,194 --> 00:40:01,031
Over ten years,
I've never received 

460
00:40:01,031 --> 00:40:03,801
a single letter of acceptance, 

461
00:40:03,801 --> 00:40:09,373
but not because of my work, 
which in the letters they express,

462
00:40:09,373 --> 00:40:12,243
it's not a form letter they express like,
this is really great.

463
00:40:12,276 --> 00:40:18,215
We just do not have capacity
or ability to meet your needs.

464
00:40:18,249 --> 00:40:20,451
And we're very sorry.

465
00:40:20,484 --> 00:40:21,619
And that's -

466
00:40:21,652 --> 00:40:27,725
Even in spaces that were self described as
being accessible residencies, they just

467
00:40:27,758 --> 00:40:32,329
did not have the capacity for that
for me in my particular case.

468
00:40:32,363 --> 00:40:38,302
And so that feeling of being left out
has really driven me to make space

469
00:40:38,302 --> 00:40:40,771
so that others aren't feeling that way.

470
00:40:40,805 --> 00:40:45,142
Because, like, knowing through
my disability justice work,

471
00:40:45,176 --> 00:40:46,977
I'm certainly not alone.

472
00:40:47,011 --> 00:40:49,447
I'm not the only one with this experience.

473
00:40:49,480 --> 00:40:56,454
One in five at best are disabled and
are in some way kept from their dreams.

474
00:40:56,487 --> 00:41:01,592
And there's this horrible feedback loop
of not seeing disabled out in public.

475
00:41:01,592 --> 00:41:08,732
And because it's not accessible,
then they're not working on making it accessible.

476
00:41:08,732 --> 00:41:13,003
And therefore disabled people can't attend
and then therefore they don't see them.

477
00:41:13,037 --> 00:41:22,112
So, yeah, the variability in access needs
is too much for most to handle 

478
00:41:22,112 --> 00:41:29,386
if they haven't even experienced someone
in their life with disability.

479
00:41:29,420 --> 00:41:37,494
And treating those with access needs as a
collaborator instead of an inconvenience

480
00:41:37,528 --> 00:41:44,068
or something to, you know, like a target
to reach or something like that,

481
00:41:44,068 --> 00:41:47,905
it could really shift the dynamic, I think.

482
00:41:47,938 --> 00:41:51,175
But unfortunately, there's still
a really unhealthy conflation

483
00:41:51,208 --> 00:41:58,983
between disability and moral failing and,
like, social contagion and as a perceived

484
00:41:59,016 --> 00:42:02,486
deserved punishment for difference.

485
00:42:02,586 --> 00:42:08,993
That has a lot to do with, like,
you know, systemically, we don't

486
00:42:08,993 --> 00:42:14,131
process grief, we don't process trauma,
particularly intergenerational trauma.

487
00:42:14,164 --> 00:42:21,138
There's a lack of visibility
in media and in life and -

488
00:42:21,138 --> 00:42:26,610
But I do see it shifting,
but unfortunately, at the expense of many, 

489
00:42:26,610 --> 00:42:32,650
many beautiful lives
that have value outside of production.

490
00:42:32,650 --> 00:42:34,785
And, yeah.

491
00:42:35,252 --> 00:42:39,757
I have the feeling that there is
also the fact that people don't know.

492
00:42:39,790 --> 00:42:40,891
Yeah, exactly.

493
00:42:40,925 --> 00:42:43,727
There is no exposure, as you just said.

494
00:42:43,761 --> 00:42:47,731
So, when - every time I'm talking about

495
00:42:47,765 --> 00:42:51,969
accessibility with someone in the artistic
community who is not -

496
00:42:52,002 --> 00:42:58,776
who didn't encounter someone
with a disability before and who didn't have

497
00:42:59,543 --> 00:43:05,249
even the occasion to, in the past, to think

498
00:43:05,282 --> 00:43:13,757
about accessibility in their own spaces or
just didn't think of the details, such as,

499
00:43:13,791 --> 00:43:18,529
okay, great, I have a ramp,
and so people can access.

500
00:43:18,562 --> 00:43:21,799
No, it's more complicated than that.
Yeah, exactly.

501
00:43:21,832 --> 00:43:23,934
It's not because you have a ramp
that you're accessible.

502
00:43:23,934 --> 00:43:27,605
It's not a checkbox situation.

503
00:43:29,673 --> 00:43:31,775
But it comes with conversations.

504
00:43:31,809 --> 00:43:35,379
And once you start conversing, today specifically, 

505
00:43:35,379 --> 00:43:39,316
because we start having these conversations in public spaces

506
00:43:39,316 --> 00:43:44,221
and in communications with politicians,

507
00:43:44,221 --> 00:43:49,259
with universities, with schools,
and saying,

508
00:43:49,293 --> 00:43:56,000
we have people out there who need to be
seen, and if you don't make this little step 

509
00:43:56,000 --> 00:44:05,142
of pushing the open minded
spirit of making things better,

510
00:44:05,175 --> 00:44:08,712
it's not only about disabled folks, right?

511
00:44:08,712 --> 00:44:11,782
It's also about universal design.

512
00:44:11,815 --> 00:44:15,886
If you make it accessible
for someone in a stroller,

513
00:44:15,919 --> 00:44:19,690
you make it accessible to everybody.

514
00:44:19,990 --> 00:44:24,695
So someone thinking about that 
and saying, oh, yeah, 

515
00:44:24,695 --> 00:44:29,299
I didn't think about that
specific aspect of the society.

516
00:44:29,333 --> 00:44:31,769
Yeah, yeah, there's.

517
00:44:31,802 --> 00:44:33,270
There's.

518
00:44:33,303 --> 00:44:35,472
There's a lot.

519
00:44:35,472 --> 00:44:37,808
I feel like.

520
00:44:39,076 --> 00:44:44,148
Yeah, I feel like one of the main barriers
is, like, people just simply

521
00:44:44,181 --> 00:44:48,452
haven't seen disabled people
because the disabled people were kept

522
00:44:48,485 --> 00:44:51,655
away from people for a very long time.

523
00:44:51,688 --> 00:44:56,927
Like, there's no intergenerational stories
about disabled people other than

524
00:44:56,960 --> 00:44:59,363
they were taken away, usually.

525
00:44:59,396 --> 00:45:06,270
So there's a lot of that
to unpack and to heal as a society.

526
00:45:06,970 --> 00:45:11,608
But then also with,
like, in a more modern context, too.

527
00:45:11,642 --> 00:45:15,512
Like,
most accessible things designed

528
00:45:15,512 --> 00:45:22,453
for disabled people because nobody wants
to fund it, ends up being

529
00:45:22,486 --> 00:45:28,392
promoted as, like,
a tool or a toy or a game

530
00:45:29,026 --> 00:45:35,365
and isn't really implemented
as an accessibility thing where

531
00:45:35,365 --> 00:45:42,806
everybody has accessibility needs. Everyone, 
regardless of whether or not you're disabled.

532
00:45:44,007 --> 00:45:44,808
I feel like.

533
00:45:44,842 --> 00:45:52,683
Like, for example, closed captions
could have been available

534
00:45:52,716 --> 00:45:56,987
on YouTube for a long, long time.

535
00:45:57,888 --> 00:46:02,092
But it took them ten years to implement
them even though they had them.

536
00:46:02,126 --> 00:46:03,060
Right.

537
00:46:03,093 --> 00:46:07,097
Similarly, with touch screens,
touch screens, which we use every single day,

538
00:46:07,097 --> 00:46:12,569
were designed for disabled people
to be able to communicate and to access

539
00:46:12,603 --> 00:46:19,309
the world, you know, text to speech,
you know, screen readers. Audiobooks.

540
00:46:19,343 --> 00:46:21,645
All of these things.
Exactly.

541
00:46:21,678 --> 00:46:30,954
There's so many, so many things that had
the focus not been on profitability,

542
00:46:30,954 --> 00:46:38,929
but on access and therefore
engagement, 

543
00:46:39,530 --> 00:46:42,432
I think a lot of things would be very different.

544
00:46:42,432 --> 00:46:43,834
Yes.

545
00:46:43,834 --> 00:46:46,069
And also it's very expensive.

546
00:46:46,103 --> 00:46:50,908
Most of these things that are
developed for a specific purpose

547
00:46:50,941 --> 00:46:56,146
and not being integrated in society,
which would make it more affordable.

548
00:46:56,346 --> 00:46:58,048
Yeah, precisely, yeah.

549
00:46:58,081 --> 00:47:05,322
And disabled folks generally live
way under the poverty line, so, like,

550
00:47:05,355 --> 00:47:09,793
being able to access those tools that
were designed for them is just out of.

551
00:47:09,793 --> 00:47:13,096
Out of reach often, which.

552
00:47:13,096 --> 00:47:15,165
Yeah, but-

553
00:47:16,667 --> 00:47:19,369
We still have some road to do.

554
00:47:19,369 --> 00:47:23,073
Yeah, absolutely.
Yeah.

555
00:47:23,073 --> 00:47:30,180
That's where I spend a lot of my time
trying to solve for some of the virtual

556
00:47:30,214 --> 00:47:35,085
versions of this because there are, like,
physical spaces that are inaccessible

557
00:47:35,118 --> 00:47:40,090
because, say, they don't have a ramp or
what have you, but virtually there's also

558
00:47:40,123 --> 00:47:47,130
similar barriers that exist which,
unless you are someone who has experienced that

559
00:47:47,130 --> 00:47:49,900
and been unable to access something
because of that,

560
00:47:49,933 --> 00:47:53,637
then communicated that to someone
who knows somebody,

561
00:47:54,104 --> 00:47:56,073
you can't really solve for them.

562
00:47:56,073 --> 00:47:58,542
So I really try to do that, I -

563
00:47:59,810 --> 00:48:02,913
After that decade of being so closed off 

564
00:48:02,913 --> 00:48:07,417
and then having that
world open for me with virtual spaces,

565
00:48:07,451 --> 00:48:10,921
I can see it closing off again.

566
00:48:11,121 --> 00:48:14,758
There are less things that
are taking place online, 

567
00:48:14,758 --> 00:48:21,031
more things are taking place in person,
but I refuse to be passive about it.

568
00:48:21,064 --> 00:48:25,602
Instead, I want to make something
that is more lasting,

569
00:48:25,602 --> 00:48:28,472
that will continue to flourish 

570
00:48:28,472 --> 00:48:35,145
collaboratively with folks
in my community so that we still have

571
00:48:35,178 --> 00:48:38,682
a virtual space to work with.

572
00:48:38,715 --> 00:48:44,888
Speaking of collaboration,
I have a last question, which is about

573
00:48:44,922 --> 00:48:48,458
inspiration or people in or community?

574
00:48:48,492 --> 00:48:57,267
In the artistic community, sharing visible
spaces, who might have inspired you or

575
00:48:57,301 --> 00:48:59,836
whom you like to collaborate with?

576
00:48:59,870 --> 00:49:02,839
Who would that person be?

577
00:49:03,073 --> 00:49:05,842
So I'm very torn.

578
00:49:05,876 --> 00:49:10,347
I have two people in mind
and then a community.

579
00:49:10,380 --> 00:49:13,817
So the two people 
I will briefly talk about.

580
00:49:13,850 --> 00:49:16,954
The first is Mari Migraine.

581
00:49:16,954 --> 00:49:23,226
She is a digital painter, a migraine and
mental illness advocate from Italy.

582
00:49:23,260 --> 00:49:28,265
She crafts contrast between vibrancy
and darkness through self portraiture.

583
00:49:28,298 --> 00:49:32,469
She explores visual hallucinations and
impressions of her physical pain through

584
00:49:32,502 --> 00:49:39,109
really exquisite pieces, often also
playing into digital culture references.

585
00:49:39,142 --> 00:49:42,446
But her symptoms
significantly impact her work.

586
00:49:42,479 --> 00:49:45,649
So it takes a lot of time for her
to create,

587
00:49:45,682 --> 00:49:49,186
but she does continue to persevere
and tell her story and make connections,

588
00:49:49,219 --> 00:49:53,790
and she has developed a slow glitch style
to provide an accessible option

589
00:49:53,824 --> 00:50:01,565
to photosensitive fans of digital
animations within the glitch art subgenre.

590
00:50:01,598 --> 00:50:04,835
I'm very proud of her for that.

591
00:50:04,868 --> 00:50:09,406
The second person is LMDesigns8.

592
00:50:09,439 --> 00:50:14,244
She is a multidisciplinary artist
from the US

593
00:50:14,277 --> 00:50:17,814
who explores her experience with chronic
illness and disability through poetry

594
00:50:17,848 --> 00:50:23,053
and music as the host of a weekly space,
as well as through immersive,

595
00:50:23,086 --> 00:50:25,589
playable virtual experiences in the form of 

596
00:50:25,589 --> 00:50:30,193
interactive virtual worlds that she has built.

597
00:50:30,927 --> 00:50:38,702
And she creates these to host live events to explore 
connections between art, music and poetry

598
00:50:38,702 --> 00:50:43,373
with the global community,
she always, always is fostering

599
00:50:43,407 --> 00:50:49,813
beautiful collaborations
between people, which has been amazing.

600
00:50:49,846 --> 00:50:56,153
And then the third one, which is
the community that I organize for.

601
00:50:56,153 --> 00:51:00,724
I gotta give them a shout out. 
It is called Teia community.

602
00:51:00,757 --> 00:51:07,864
TEa is a Dao LLC nonprofit organization.

603
00:51:07,864 --> 00:51:13,136
It is laterally structured,
community owned and maintained

604
00:51:13,170 --> 00:51:23,046
from open source code, and
it reaches every corner of the world.

605
00:51:23,079 --> 00:51:27,818
We are constantly building and adding
new tools, new accessibility options.

606
00:51:27,851 --> 00:51:37,727
One of the really wonderful ones that we
were able to set up is photosensitivity

607
00:51:37,761 --> 00:51:39,896
and not safer work filters.

608
00:51:39,930 --> 00:51:45,235
So when you are creating your art to be
posted on on that site,

609
00:51:45,969 --> 00:51:52,642
it allows for the option to
indicate if it is going to be a flashing

610
00:51:52,676 --> 00:52:00,150
or undulating or highly patterned piece
that may affect folks with migraine

611
00:52:00,150 --> 00:52:07,057
or epilepsy or vertigo, 
as well as the not safer work filters

612
00:52:07,057 --> 00:52:15,198
for any sexual or potentially
violent imagery that may

613
00:52:16,633 --> 00:52:25,709
affect folks who have conditions such as
complex PTSD and or who have experienced

614
00:52:25,742 --> 00:52:31,882
traumatic events like war or
other difficult subject matter that

615
00:52:31,882 --> 00:52:35,185
care needs to be taken and how
that is presented.

616
00:52:35,218 --> 00:52:42,292
So when people access that site
without logging in,

617
00:52:42,692 --> 00:52:50,934
those pieces will be blurred and still
so that it is a safe first experience.

618
00:52:50,967 --> 00:52:57,274
And then within the user settings,
each user can choose whether or not

619
00:52:57,274 --> 00:53:02,512
to see one or both of those
components based on their own needs.

620
00:53:02,512 --> 00:53:09,085
And it has been working very well,
and it's been really great to see

621
00:53:09,119 --> 00:53:15,592
all of the artists in the community as we
started to present this as an option,

622
00:53:16,159 --> 00:53:19,563
a lot of the artists were surprised
that this was a problem like,

623
00:53:19,596 --> 00:53:25,001
that their work could cause others harm,
and we're very grateful that that had been

624
00:53:25,035 --> 00:53:29,139
solved for them because they were unaware
of it, but the problem

625
00:53:29,172 --> 00:53:30,774
had been solved for them.

626
00:53:30,807 --> 00:53:36,179
And so they're very, very active in
tagging their work appropriately

627
00:53:36,213 --> 00:53:42,452
with those qualifiers to
make sure that they are safe.

628
00:53:42,485 --> 00:53:49,659
But, yeah, that community is all volunteer
run, so we have a good time of it.

629
00:53:49,693 --> 00:53:52,228
That sounds great.

630
00:53:53,029 --> 00:53:57,067
Okay. Thank you so much for sharing 
your work with us today, 

631
00:53:57,067 --> 00:54:01,404
and I wish you a very good time in your garden, 

632
00:54:01,404 --> 00:54:06,810
and I look forward
to other great pictures of nature.

633
00:54:06,843 --> 00:54:11,314
Awesome. Thank you so much for
this opportunity today and

634
00:54:11,314 --> 00:54:15,418
this beautiful conversation, because
I really enjoyed myself, and meeting you.

635
00:54:15,452 --> 00:54:17,621
So thank you.
Thank you.

636
00:54:18,788 --> 00:54:23,927
♪ Closing theme music ♪