An editorial essay on Disability art, healing justice, the hustle of the emerging marginalized artist.

by jes sachse

“We begin by listening. We are People of Colour, Indigenous people, disabled people, and survivors of trauma, many genders, ages and classes of people. We centre the genius and leadership of disabled and chronically ill communities, for what we know about surviving and resisting the medical industrial complex and living with fierce beauty in our sick and disabled bodies. We say no to the medical industrial complex’s model of “cure or be useless,” instead working from a place of belief in the wholeness of disability, interdependence and disabled people as inherently good as we are.”

– Healing & Health Justice Collective Organizing Principles, US Social Forum Detroit 2010

‘I have great immunities! I think it’s because I was born in a hospital,’ I say as you unlock the door of the apartment where your cat eagerly awaits our return.

‘What??’ you laugh in confusion.

 It was not what I meant. I remember fumbling with my words and eventually discarding them and hopping on your bed in playful distraction, hopelessly smitten in my first SDQ (sick and disabled queer) relationship.

I meant I was raised in a hospital. The mothership. Among others of my kind. Paranoid of cops and public transit officials trying to return me. One time wheeltrans slowly followed me for a whole block down Sorauren Avenue and I was like ‘aw shit! It’s happening!’ Turns out they were just looking for an address.

When I moved to Toronto with them big city dreams, it was from a smaller town nearby. Disability art was a new and burgeoning thing to me then, and to the Canadian scene, and I was eager to explore it. I resolved that in order to do that I needed to be around people that could grow me. I needed to know what was out there and I figured Toronto could tell me, with its rumours of other disabled queers.

This cold shoulder of a city has fulfilled its promise and then some. I’ve learned the art hustle of the emerging marginalized artist. Connection across disciplines, politics, and identities. Negotiations between steep rent and steeper poverty transformed into sweet poetry on the social media surface of me. I have made a home and it only took five years to get here.

Here for me is more literally the city’s southwest neighbourhood of Parkdale. I suppose Parkdale is as good a place as any to think about being disabled. Poverty and gentrification coming in from all sides. A place where scrappy meets yuppie in an elbow of streets just before the lake. Years learning the sidewalk dance of dodging the wheelie cart bubbies of a still very Polish Roncesvalles Village cuz no they don’t see your shared crip identities and they will RUN YOU DOWN.

The word disability has a lot of whiteness to contend with. It comes from institutions, which have an inherited colonial history: the medical industrial complex and the academic industrial complex.

I receive a lot of speaking engagements from academic institutions. The academy did not create disability art, but it did brand it. With the brand comes the decree of legitimacy. (I was once asked to give a presentation at a conference at Yale. It didn’t matter that no one paid me; it was Yale! Yaaaaale. Although when trying to board the campus shuttle, right on cue, I was asked if I was looking for the hospital shuttle).

I think I really did believe that a growing interest in disability art meant a growing care for disabled people. But that is a harsh untruth of being a marginalized artist contending with institutionalized power. With the apparent success of my own growing brand, I feel a growing emptiness. Hunger pangs that the McD’s value menu never seems to fill, despite repeated attempts at slinging toonies at the problem.

In a Canadian art context, marginalized identities ask for commodification in order to sustain an emerging artistic practice, while the work produced is often valued for only that: its marginalized quota. In the process of naming oneself over and over as marginalized artist, for funding, for work, for survival, an oppositional isolation is deeply felt. As though that is all one’s work is or is doing: marginalizing.

I can remember my first review in NOW Magazine, during my very first solo show for CONTACT Photography Festival. The images spanned the work of two years of vivid, visceral, queer and erotic digital self-portraiture; early photographic attempts at visually locating myself across my identities and communities. Although positive, the paragraph written about the series amounted to ‘These photographs show sachse just living life!’

Since that time, I have been given several platforms to speak from. And yet I still long for the missing care in my work’s curation. Disability art has in many ways revealed itself to exist to legitimize the very whitewashed disability studies academy. The disability studies academy will engage with disabled artists insofar as they prove of value to scholarship.

This problem is further perpetuated by organizational funding structures like the Ontario Art Council’s project grant specific disability art, which insists on a full disability roster (of almost circus-like variety) in order to be considered. If the entire slew of the projects participants are not disabled, the project does not qualify, which is a forced segregation having nothing to do with craft or medium.

Sadly, disability art is not inherently healing justice, as the spaces it takes up do not centre care or healing, but commodification. I have at times made bad art that speaks to non-disabled feminists before because it meant getting heard from at all; the ache for intimate artistic engagement is real and fuels the work of survival of artists working from the margins.

Thursday, March 24th, 2016. It’s late. I just left Lynx, horizontal on one of black pleather couches in the lobby of OCAD (Ontario College of Art and Design), spoons1. low and on the phone with their Vancouver sweetie.

1. Spoon Theory

The word disability has a lot of whiteness to contend with. It comes from institutions, which have an inherited colonial history: the medical industrial complex and the academic industrial complex.

I receive a lot of speaking engagements from academic institutions. The academy did not create disability art, but it did brand it. With the brand comes the decree of legitimacy. (I was once asked to give a presentation at a conference at Yale. It didn’t matter that no one paid me; it was Yale! Yaaaaale. Although when trying to board the campus shuttle, right on cue, I was asked if I was looking for the hospital shuttle).

I think I really did believe that a growing interest in disability art meant a growing care for disabled people. But that is a harsh untruth of being a marginalized artist contending with institutionalized power. With the apparent success of my own growing brand, I feel a growing emptiness. Hunger pangs that the McD’s value menu never seems to fill, despite repeated attempts at slinging toonies at the problem.

In a Canadian art context, marginalized identities ask for commodification in order to sustain an emerging artistic practice, while the work produced is often valued for only that: its marginalized quota. In the process of naming oneself over and over as marginalized artist, for funding, for work, for survival, an oppositional isolation is deeply felt. As though that is all one’s work is or is doing: marginalizing.

I can remember my first review in NOW Magazine, during my very first solo show for CONTACT Photography Festival. The images spanned the work of two years of vivid, visceral, queer and erotic digital self-portraiture; early photographic attempts at visually locating myself across my identities and communities. Although positive, the paragraph written about the series amounted to ‘These photographs show sachse just living life!’

Since that time, I have been given several platforms to speak from. And yet I still long for the missing care in my work’s curation. Disability art has in many ways revealed itself to exist to legitimize the very whitewashed disability studies academy. The disability studies academy will engage with disabled artists insofar as they prove of value to scholarship.

This problem is further perpetuated by organizational funding structures like the Ontario Art Council’s project grant specific disability art, which insists on a full disability roster (of almost circus-like variety) in order to be considered. If the entire slew of the projects participants are not disabled, the project does not qualify, which is a forced segregation having nothing to do with craft or medium.

Sadly, disability art is not inherently healing justice, as the spaces it takes up do not centre care or healing, but commodification. I have at times made bad art that speaks to non-disabled feminists before because it meant getting heard from at all; the ache for intimate artistic engagement is real and fuels the work of survival of artists working from the margins.

Thursday, March 24th, 2016. It’s late. I just left Lynx, horizontal on one of black pleather couches in the lobby of OCAD (Ontario College of Art and Design), spoons2 low and on the phone with their Vancouver sweetie.

We’d gone shopping for art materials. We were both running creative writing workshops around that time and were looking for ways to stretch our modest budgets into the nicest supplies. One hour in a stair filled supply store later and all 2 canes 2 crips 6 legs of us were TIRED. Like, need to sit down somewhere on a ticking clock kind of tired. Initially, I had offered that we go to The Rex after, due to its close crip proximity. I know the area like the back of my claw hand. Filed under: ‘A place to sit and jazz.’

Wheeltrans had messed up and wouldn’t be arriving till 10:30pm. But when we reached the bottom of the ramp Lynx, in their Capricorn rising steadfast charm, stopped and announced ‘Nope.’ Which is how we found ourselves camped in the university’s lobby instead.

‘Do you have a [phone]charger?’ they ask, a chuckling metaphor of our current energy levels.

Surprisingly I did. We find a nearby bench and corner with an outlet.

With hours to go before their ride, we seize the opportunity to hang out. Scatter their new supplies on the well-lit concrete floor for a future social media post to promote #BlackSpoonieSpeak, a workshop by Lynx Sainte-Marie, trying to sculpt the aesthetic jusssst right for Insta.

The hustle.

(It feels like this great secret that when two or more spoonies who centre care with each other come together, access needs don’t actually double but decrease, because bodies inform each other. A deep balance of limits & desired outcomes.) 

At 9:30pm, after twenty different conversations & a relocation to the black pleather couch, Lynx insists that I start home. My body has begun its nightly shut down. I’ve taken to referring to it as ‘kitten hour.’ If I don’t get on transit within kitten hour I will be too sleepy. Falling asleep in public is an unsafe thing in the world.

At the stop, it starts to rain. Streetcars crawl toward me in the great damp distance of Queen Street, their green-lit antennae making a Gatsby out of me. It aches of unfulfilled promise. As access wages, the same ancient stress on my bones so begins again the calculation of steps to home. The wince of what happens when home was other people. The funerals step onto the streetcar with you, sidle into front seat to rest; blue, sideways, a marker of loss incomplete. Pain, but also Love.

jes sachse

jes sachse

jes sachse is a Toronto-based poet, artist & curator obsessed with disability culture. Living across the blurred lines of whiteness, poverty, lifelong disability, genderfluidity and madness, they are currently working on their first illustrated novel, Gutter, which will portray these dilemmas through a multi-modal narrative form, reflecting at once on both a crip navigation of contemporary culture, and the permeation of traumas in spaces of invisibilized violence.