Beyond the Pale

Beyond the Pale

Folklore, Family and the Mystery of Our Hidden Genes

Book - 2016
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Emily's 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 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.
Publisher: London : 2016. Jacaranda,
2015. ,
ISBN: 9781909762336
Branch Call Number: ANF 362.19655009 URQU
Characteristics: xi, 278 pages ; 22 cm


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May 24, 2019

when the author has a daughter born with albinism she throws herself into exploration of genetics, family history, the shocking reaction to albinism in some parts of the world, and how to love and protect her daughter while also allowing her to be free.

Dec 08, 2015

A lot more about her travels to visit persons with albinism and less about the actual the actual condition. Still, there was some interesting information on the condition and cultural reactions to those with albinism.

sdodge66 May 08, 2015

"While [the book]... was inspired by one tiny girl, [it] covers broad ground. It is an honest memoir of a loving and protective mother...and serves as an homage to survivors of horrific violence ...[It is also] a study of how longheld cultural beliefs drive the idea of difference or "the other". " Sue Carter Flinn Q&Q March 2015.

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