Beyond the Pale: Folklore, family and the mystery of our hidden genes
In Beyond the Pale, Emily Urquhart’s story begins on St. Stephen’s Day, 2010, in St. John’s, 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 child’s 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.
Beyond the Pale is a heartfelt and enlightening new work for fans of Far From the Tree by Andrew Solomon, Rebecca Skloot’s The Immortal Life of Henrietta Lacks, Rebecca Solnit’s The Faraway Nearby and Through the Children’s Gate (Adam Gopnik).
‘An extremely necessary and moving book examining our human need to explain where it is we come from: the stories and tales we tell each other to bring communities together, and the ones we tell to tear them apart. From folklore to family, from genetics to hearsay, Emily Urquhart’s Beyond the Pale is one of the most powerful non-fiction books I’ve ever read. Read it and buy copies for everyone you know.’
– Jen Campbell, author of The Bookshop Book
‘A graceful, perceptive rendering of a misunderstood condition.’
– Kirkus Reviews