Beyond The Pale: Folklore, Family, and the Mystery of Our Hidden Genes - Couverture souple

Like any new mother, Emily is thrilled when her first child, a daughter, is born. The baby, Sadie, is healthy and stunningly beautiful, with snow white hair and fair skin. Even the doctors and nurses can’t help a second look at this magical child. But soon a darker current begins to emerge―something is amiss. After three months of testing, Sadie is diagnosed with albinism, a rare genetic condition.

Emily, a folklore scholar and an award-winning journalist, is accustomed to understanding and processing the world through stories. With Sadie at her side, Emily researches the cultural beliefs surrounding albinism and finds a curious history of outlandish tales of magic, and of good and evil reaching back through time, along with present-day atrocities. In some parts of the world, people with albinism are stalked; their condition is seen to bring luck and health as well as danger and death. Investigating the different reactions, in different cultures, to those with albinism, Emily begins to see her child as a connection between worlds.

Part memoir, part cultural critique and part genetic travelogue, Beyond the Pale is a brave, intimate investigation into the secret histories that each of us carries in our genes and an inspiring and beautiful memoir about parenting a child with a disability―and building a better future for that child.

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 in Victoria, British Columbia, with her family.