'What happened to your face?' Living with a facial difference
The stories we tell, bring structure to our world. They remind us who we are, and where we've come from.
So what happens when your story is left out? On this episode of The Doc Project we hear what it's like when your story isn't told.
Tanya Workman has a facial difference, something we would once label as a deformity or disfigurement. So does David Roche. But while language has evolved, have cultural attitudes and understanding? This doc is about perceptions of difference and the stories we tell about those differences.
When I initially pitched this story back in September, my intention had not been to linger as much as I have on the stare and how it continues to affect my own personal narrative.
As I came to understand from my involvement in the Project ReVision storytelling initiative created by Dr. Carla Rice, the act of telling and sharing stories about lived experiences of difference and disability is about dismantling stereotypes that can create societal barriers.
One person I interviewed for this radio doc was my friend Eliza Chandler, doctoral fellow in Ryerson's School of Disability Studies and the artistic director of Tangled Art + Disability. "Art is so important," Eliza tells me. "By telling our stories by our own terms, we're contributing to more real, more authentic, more complicated, more dynamic stories than what flattened stereotypes can produce." And creating communities where difference is desired.
If the title of this doc, What Happened to Your Face? elicits a negative reaction from some listeners, it's supposed to.
American sociologist Harvey Sacks, Eliza says, writes about "storyable people" - those in society who require a story to explain themselves; who are required to explain "what happened to you?" These questions, Eliza says, "can be invasive because they're trying to tell a particular story of how difference sits in the body without acknowledging that difference is created in the social."
Difference and disability are "always experienced in the midst of other people. So when we're telling stories of disability it's never purely our own story. it's always how our bodies or how our own experiences are mediated by people we encounter."