FEATURED IMAGE DESCRIPTION: A pencil sketch created by the author of a woman sitting on the floor against a wall. Her knees are bent, her head down, and her long hair is covering her face. Her left hand is covering her left ear, and her right arm is cradling her head. She is wearing jogging pants that say ‘Adidas’ on the left leg. The pencil sketch is drawn on lined paper, which is cut out surrounding the image on the top, and gently ripped on the bottom and then placed over another white piece of paper.
BY: HILARY PEARSON
Presented at the Brain Injury Society Toronto’s annual expressive art show: Art on the Brain (Assembly Hall, 2023) in Toronto, Ontario.
My doctoral research at the University of Toronto investigates disability studies and social justice education through a disability studies perspective. Devon Healey (my academic advisor) writes about her life experiences as a Blind woman in her book, Dramatizing Blindness: Disability Studies as Critical Creative Narrative (2021). Devon explains that Blind was what she was, not who she was (Healey, personal communication, September 21, 2022). These words now influence and inspire my own writing—my own artwork. And here is where I engage with a politics of wonder (Titchkosky, 2011).
Who I thought I was.
My initial understanding of my personal identity was intrinsically interconnected with disability. I internalized this notion of what it meant to “live with the effects of brain damage.” I am understood as “a brain injury survivor.”
How does the word “survivor” define what and who I am? Is my identity synonymous with surviving, struggling to get by?
Is surviving really all that my life will be? Is this what my artwork says to the world? Is this what my artwork has to offer? As if to leave my ghost to drift through the world as a partial and incomplete person?
Is this the message I want to portray with my artwork, my writing? Is this what I want to say? My art makes me wonder: How does the able world make sense of us?
My vision of disability used to be anchored in the core belief that disability was meant to be something ignored, marginalized, poverty stricken, and problematic (Mitchell, 2002).
I saw my “old self” as a creature that died. And the broken, leftover pieces are all I have left to work with. By taking these fragments and piecing them together only to be made into public art, we (as disabled people) are put on display for the world to see (Garland-Thompson, 2002). Society watches us and judges us no matter where we might move in the world.
And I wonder, is this what I want the world to see?
But who’s eyes do we paint our art for? Are we truly painting our pain onto paper and canvas for the stranger’s eyes to see? Do we draw and sketch and scribble and splatter colour on a page to say:
Look at me.
Look at my disability.
Look at the diagnosis that designates my identity as a brain injury survivor.
Ask me this question. Ask me: Who is my art made for?
My art is meant for me. My art is an explosive expression of how I process and expel the pieces of my life that I cannot yet make sense of. Brain injury sometimes takes away my ability to find the words and the language and the emotion that might explain to myself what I feel and how I navigate my life with disability.
Let me tell you, my life makes a little more sense when I paint its pieces on a page. My life finds structure when I scratch my poetry in my notebook or on the back of my hand. I do not want to lose myself or forget this part of my life. My life is not about waiting for things to get better. It has been 5 years, 2 months, and 3 days since my first concussion. Life is different. Things are different here in this new world of mine (Michalko, 2017).
I nod along with Rod Michalko (1999) as he describes his introduction to blindness, “ordinary life was no longer ordinary; everything was wrapped in a cloak of anxiety…. fear, and confusion” (p. 2).
Let me tell you how I truly believed that I was the first person that this had ever happened to. I lay in the dark with a pillow over my head and I asked no one in particular:
Why is this happening to me?
Why am I alone?
What am I supposed to do?
I cannot be the only one who feels this way. Statistics tell me that Ontario is home to 500,000 brain injury survivors (Ontario Brain Injury Association [OBIA], 2021). But where are they? Where did you go?
Let me tell you, it was a piece of art that found me. A piece of art painted on a concrete wall, hiding in the side streets of Toronto. A concrete piece of “disability art” that called my name and said to me:
I am here. And I feel just like you.
Let me tell you how I followed that artwork and I found more members of that same disabled family, full of artists that understand exactly how I feel. Paint, pencil, pastel, chalk, charcoal, clay, crayon, marker, music, words, stories, songs, sounds that all mean something to somebody.
And maybe this art resonates with you. Maybe this art shows you something different … a life that you have never had to think about living.
Maybe this art reminds you of someone you used to know. Someone from high school, or someone you have seen on TV or in the news.
My art is not special because of a disability. My art is a reconning. My art is not up for debate or theoretical analysis. That is not what this is about. That is not who it is for.
My art is disability art because my art calls out to the ones out there who think that they are the first and only one to live with the effects of brain damage. The ones who feel alone. The ones who are lost and need us to call them back home. Not to join a club. Not to label them with a name that they do not know or want.
My art is like propaganda. My art says: we exist.
References
Assembly Hall. (2023, May 17). Brain Injury Society Toronto: Art on the brain. Toronto, Ontario, Canada.
Garland-Thomson, R. (2002). The politics of staring: Visual rhetoric’s of disability in popular photography. In, S. L. Snyder, B. J. Brueggemann, & R. Garland-Thomson (Eds.), Disability studies: Enabling the humanities (pp. 56-75). New York: Modern Language Association of America.
Healey, D. (2021). Dramatizing blindness: Disability studies as critical creative narrative. Literary Disability Studies Series, Palgrave Macmillan Publishers Ltd.
Michalko, R. (1999). The two-in-one: Walking with Smokie, walking with blindness. Temple University Press.
Michalko, R. (2017). Things are different here: and other stories. Insomniac Press.
Mitchell, D. (2002). Narrative prosthesis and the materiality of metaphor. In, S. L. Snyder, B. J. Brueggemann, & R. Garland-Thomson (Eds.), Disability studies: Enabling the humanities (pp. 15-31). New York: Modern Language Association of America.
Ontario Brain Injury Association (OBIA). (2021). Social isolation focus groups – final report. Brain injury speaks stakeholder engagement network of Ontario. Retrieved September 16, 2022, from https://obia.ca/wp-content/uploads/2021/10/Social-Isolation-Focus-Groups_Final-Report.pdf
Pearson, H. (2023, May 17). We exist[Spoken word presentation]. Brain Injury Society Toronto: Art on the brain. Assembly Hall, Toronto, Ontario, Canada.
Titchkosky, T. (2011). Towards a politics of wonder in disability studies. In, T. Titchkosky (Ed.), The question of access (pp. 129–150).University of Toronto Press.
About the Author
Hilary Pearson is a doctoral student at the University of Toronto. Making use of interpretive disability studies, her academic work explores the ways in which Western culture understands what it means to be human.