Beyond The Pale
Folklore, Family, and the Mystery of Our Hidden Genes
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- ¥1,200
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- ¥1,200
発行者による作品情報
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.
PUBLISHERS WEEKLY
This somber, studiously plotted memoir tracks how a Canadian couple came to terms with their daughter's rare genetic condition and devleoped a larger, universal sense of familial belonging. The author, then a graduate student in folklore, and her husband, Andrew, a biologist, lived in Newfoundland when their daughter was born in 2010. Sadie had a shock of white hair and low vision in her extremely sensitive eyes, confounding manifestations of what a geneticist finally diagnosed as albinism a condition that can be passed down "silently for centuries" because it requires a recessive gene carried by both parents. After initial stages of denial, Emily and Andrew consulted "a slew of specialists" from Toronto to Victoria, where they relocated for Andrew's work, and had Sadie fitted for special glasses. They also began to network with other parents, tapping into the National Organization for Albinism and Hypopigmentation (NOAH) at a convention in St. Louis, Mo. After they learned of horrific stories of brutalization of people with albinism in rural Tanzania and elsewhere in Africa, they ventured to Dar es Salaam to visit some of the victims, who were sheltered by the Under the Same Sun organization. In addition, the author perused her own family history seeking the early carriers of the genetic condition. This memoir is tediously crammed with both a dire sense of global discrimination and an intensely personal focus.
