Beyond The Pale
Folklore, Family and the Mystery of Our Hidden Genes
Author: Emily Urquhart Series: Jacaranda
Emily is drawn to understanding her child's albinism by researching the cultural beliefs associated with albinism worldwide; a journey that takes her to a faraway continent, through her own family tree, and all the while unearthing discoveries that vacillate between beauty, amazement and horror.
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Summary
Emily is drawn to understanding her child's albinism by researching the cultural beliefs associated with albinism worldwide; a journey that takes her to a faraway continent, through her own family tree, and all the while unearthing discoveries that vacillate between beauty, amazement and horror.
Description
Emilys story begins on St. Stephens Day, 2010, in St. Johns, Newfoundland when she gives birth to a baby girl named Sadie Jane with a shock of snow-white hair. Within 3 months Sadie is diagnosed with albinism, a rare genetic disorder where pigment fails to form in the skin, hair and eyes, with accompanying maladies such as photophobia and partial blindness.Emily is drawn to understanding her childs differences by researching the cultural beliefs associated with albinism worldwide; a journey that takes her to a faraway continent, through her own family tree, and all the while unearthing discoveries that vacillate between beauty, amazement and horror.
Critic Reviews
“Beyond the Pale is a brave, thoughtful, clear, and always graceful journey through the terrifying randomness of genetics and the unexpected ways genetic anomalies can mark not just children, but all the lives around them. Best of all, it ends with a surprise - one that will interest anyone thinking of having a family.”
Ian Brown, author of The Boy in the Moon: A father's search for his disabled son
Beyond the Pale is a powerful story about maternal love, the long reach of family and the ways -- good and evil - we react to disability. Katherine Ashenburg, author of The Dirt on Clean: An Unsanitized History
A graceful, perceptive rendering of a misunderstood condition. Kirkus Reviews
About the Author
Emily Urquhart, a writer and folklorist, grew up in a small town in southwestern Ontario and has lived in Nice, Dublin, Edinburgh, Toronto, Vancouver and Kyiv, among other places. She has a doctorate in folklore from Memorial University of Newfoundland and undergraduate degrees in journalism and art history. Her work has appeared in numerous
publications, including Reader's Digest, Flare and The Walrus, and she won a National Magazine Award in 2014. Emily Urquhart lives inVictoria, British Columbia, with her family.Emilys story begins on St. Stephens Day, 2010, in St. Johns, Newfoundland when she gives birth to a baby girl named Sadie Jane with a shock of snow-white hair. Within 3 months Sadie is diagnosed with albinism, a rare genetic disorder where pigment fails to form in the skin, hair and eyes, with accompanying maladies such as photophobia and partial blindness.Emily is drawn to understanding her childs differences by researching the cultural beliefs associated with albinism worldwide; a journey that takes her to a faraway continent, through her own family tree, and all the while unearthing discoveries that vacillate between beauty, amazement and horror.
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