| Statement
To honour the request for background about my work, and my disability, I will do my best to contextualize all of these. I’ve only started disclosing my condition again; having a rare genetic condition with a very visible marker has and continues to be a lifelong negotiation, mostly with space. “Freeman-Sheldon Syndrome”, as an explanation, has felt about as dysphoric a descriptor as being transgender has - the names of two dead white male doctors who “discovered” the genetic mutation responsible for the rare 150 of us that exist as we do in the world forever attached to my own name is as colonial as limiting gender to male/female and other in the western world.
I grew up in a two horse town, with more churches than people, in the midst of the Reagan era and dawn of the ADA. Schooling was segregated and ableism rampant. I learned how to push myself to excel while distancing myself from from the very thing that seemed to define the entirety of me. Uxbridge in the 90s was a working class farming town on the brink of becoming a bedroom community to wealthy Toronto. It was full of artists, who relocated their practices to farmlands in the 70s, and still makes for one of the most exciting studio tours every fall that I've ever experienced; large, rolling idyllic hills covered in large scale metal, glass, and concrete dreams.
I never thought that I could be a builder or a dancer. I could do these things, yes, and as stubborn a git as I am I did verily prove these things. But I wasn’t seen as possessing “the ability” for them as my craft or career. Not without “help.” I grew accustomed to the resignation of others’ interference in my creativity; how everything about disability and disabled bodies necessarily needed to be translated and displayed for an abled and gawking audience. This story is an ancient one. But in my still very short life I feel lucky to have witnessed, and perhaps been a part of, the change in this story-telling.
My early artistic practice was informed by these narratives. In 2010, I produced a body of photographic work called American Able . It was an opportunity to insert myself into a satire of the already then controversial American Apparel ads, by placing disability in the fore. It was radical at the time, and garnered a lot of attention and a lot of hate because of it. To dare to insert oneself into the mainstream narrative, at a pre-social media time of the Internet, in a body not commonly seen beyond the oscillating pity/superhero tropes was a punishable offense.
Ultimately, this viral internet experience informed much of what I thought and felt about representation in my early work. I perceived both its freedoms and limitations, and certainly felt the violence of the visibility it created, especially in a Canadian context, which despite touting a ‘diversity’ nationalist rhetoric, still recoils in the actual naming and embracing of othered difference.
That representation of my image kept being demanded of me, with little to no remuneration, a long standard practice of treatment for people with disabilities under capitalism. I became very isolated and disillusioned with photography very quickly, feeling only let in the door as subject, and dismissed entirely as author. It feels complicated to be critical of one’s own visibility, a visibility that has certainly contributed to what work and opportunities I have in fact been able to access, but it is necessary. I began to question the honesty and agency in being propelled forward as a pedagogical tool, and photography’s long history of voyeurism, museological catalogue, and exploitation.
The idea of a sculptural practice happened almost by accident. I was desperate to maintain an artistic practice but tired of the representation of my own body, seemingly contextless and yet meant to be “understood” in one glance. It was in the spring of 2013 that a friend and I were joking about plastic coffee lids, and our disability-informed inability to sip without spilling. I commented to my friend that I preferred to use a straw in hot coffee, despite able-bodied ridicule, and she quickly corrected me with a smile and said ‘you mean, a freedom tube.’
It was at that moment, perhaps a moment I had waited for my whole life, that this thing, this innocuous and yet repeatedly used object became a montage in my mind- of every time I’d seen a disabled person using a straw in an unconventional (read: normative) way; a pint glass of beer, a hot coffee, a larger straw to power a wheelchair, a breathing tube. Each use its own little revolution. It had a name. A name given by community. I began the process-oriented sculpture Freedom Tube that summer during an artist residency, my first, on the Toronto Island, which I build and unmake and remake using thousands of red and white bendable drinking straws.
I have now built and installed Freedom Tube several times over the last five years, including most recently in a major museum which commissioned an installation of 40 thousand. There is a remarkable nature to the work. The straws individually are so weightless that they require no adhesive at all to connect to each other, just a small amount of physics. They are not delicate - they can be ripped apart and tenderly reassembled. They have me as their author and yet I am not there at all in them. They are an intimacy I have built over five years - I dance as I build, and maintain a speed of 500 straws an hour. No one competes in a medium like this, because it is not really seen as a medium at all. And all of this labour is always necessarily site specific, which demands a deep consideration of space, repeatedly.
Straws proliferate spaces of poverty and economic access, like food courts, like McDonald’s - places where you don't have to pay for them, or pay to sit down or use a washroom. In in its recent life, the straw ban controversy has risen. There is an interrogation of The Straw as the culprit of human violence, when in fact, it's suggested replacements, like metal straws, cause economic barriers, physical strictness, and are a product of the mining industry. There is a human discomfort, particularly in the western world, with facing the violence we’ve created, which we respond to with quick ‘solutions’ that instill the feeling of ‘goodness’ and cleanness as comfort while not being solutions that take care of each other and the planet. This applies so deeply to our discomfort with disability, treating bodies as freight, better to not be seen, better to not be a liability in our architectures.
I’m 33 now and yet I feel like I have only been alive in this last year. There is such a delicate patience in waiting to speak, tell a story the way you want to tell it, for who you want to tell it to, and the words you want to use to name things. I draw so much inspiration and gratitude from the wonderful, rich, and diverse disabled, mad and Deaf artists who have gone before me, who mentor me, and who are making alongside me. When I wake up in the morning I remember all of the winters when I really didn't want to. These collective conversations, that radically and deeply consider context as part of their artistic interrogation, that locate stolen lands and institutional violence, that name unimaginable pain, is the healing work that fills my lungs, like dancing always has, like sculpting now does, and like only poetry can name.
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