Beyond The Pale
Folklore, Family and the Mystery of Our Hidden Genes
Format:Paperback
Publisher:Jacaranda Books Art Music Ltd
Published:11th Apr '16
Currently unavailable, and unfortunately no date known when it will be back
Emily'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 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 *
ISBN: 9781909762336
Dimensions: 214mm x 138mm x 22mm
Weight: 300g
292 pages