“I engineer families out of strangers”

I had the pleasure of writing a review of Jen Powley’s memoir, Just Jen, for this month’s Quill & Quire.

Memoir lovers and disability activists will appreciate Powley’s politics and her direct and unflinching prose. Personally though, the element of her story I was most struck by was her resourcefulness in creating human networks that support her living her life on her own terms. She summarized this practice in the sentence: “I engineer families out of strangers.”

I thought about how impossible it would be to survive with my own multiple health issues without a richly-peopled, supportive community. I relate both to Powley’s stubborn independence and the struggle of experiencing my vulnerability. It’s not easy to acknowledge that I need people. For anything. Ever. So engineering families out of strangers is a skill forged through pain. Things have to become dire before I am willing to admit that I need help, much less ask for and then accept it.

A more realistic model for all humans muddling our way through the world with our complicated lives is interdependence—blending the unrealistic polarity between dependence and independence to recognize that we all need each other. There’s no question Powley and I offer reciprocity to our loved ones. Accepting support through one set of circumstances doesn’t mean we aren’t equally present for them at other times and in other ways.

Another important concept Powley raises is “the dignity of risk”. Too many times, people presume because I’m public about my health struggles, my choices are open for debate and discussion. The dignity of risk asserts our right to make choices other people think are “bad” or ill-informed or even dangerous. It doesn’t matter if it makes you uncomfortable. Our illnesses and disabilities don’t make us wards of society. And building healthy community can’t happen while one person’s dignity is sacrificed for another’s concern-policing.

I got my paper copy of this month’s Q&Q from my local Book City  last week. Reading the rest of the issue, I was warmed by the resilience and joy of illustrator Debbie Ridpath Ohi, featured on the cover, and Sue Carter’s editorial about Canada 150. The decision not to rely upon nationalist versions of connection and community and instead to honour the art that struggles with the reality of historical fractures is explored throughout the issue.

I am left thinking about the ways we weave community intentionally. Not cheer-leading or papering over the cracks, but with honesty, respect, and a willingness to negotiate when we get it wrong.

About the author: Julie Devaney is a patient activist living in Toronto. She is the author of My Leaky Body (Goose Lane Editions: 2012) and co-editor of MESS: The Hospital Anthology (Tightrope Books: 2014). My Leaky Body was one of Quill and Quire’s Top Five Non-fiction books of 2012. Julie was named a Woman Health Hero by Best Health Magazine in 2011 and has been profiled on CBC Radio’s White Coat, Black Art and The Current, in Chatelaine and the Toronto Star. Her writing has appeared in The Globe and Mail, Toronto Life and numerous anthologies. Julie has given hundreds of presentations at medical schools, nursing conferences and theatres throughout Canada and in the US and the UK using participatory techniques with patients and professionals to formulate strategies for change and innovation in healthcare. Her work at the University Health Network in Toronto has transformed real patient stories into staff training.
Category: Recommended Writers

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