Beyond the pale : folklore, family, and the mystery of our hidden genes

by Urquhart, Emily,

Format: Print Book 2015
Availability: Available at 1 Library 1 of 1 copy
Available (1)
Location Collection Call #
CLP - Main Library Mezzanine - Non-fiction GN199.U77 2015x
Location  CLP - Main Library
 
Collection  Mezzanine - Non-fiction
 
Call Number  GN199.U77 2015x
 
 
Summary

The story begins on St. Stephen's Day, 2010, in St. John's, Newfoundland, when the author gives birth to a baby girl named Sadie Jane who has a shock of snow-white hair. News of the child's icy locks travels across the hospital, and physicians and nurses from all wards visit the unusually beautiful newborn as she lies sleeping in her plastic bassinet. The maternity-floor janitor, however, feels something is amiss. Her eyes wide, incredulous and panicky, Emily asks, "Is she an albino?" The idea is immediately dismissed, but after three months of medical testing, Sadie is diagnosed with albinism, a rare genetic condition where pigment fails to form in the skin, hair and eyes. She is visually impaired and faces a lifetime indoors. She will always have the otherworldly appearance that drew the awestruck hospital staff to her side.

A journalist and folklore scholar accustomed to processing the world through other people's stories, Emily is drawn to understanding her child's difference by researching the cultural beliefs associated with albinism worldwide. What she finds on her journey vacillates between beauty and darkness. She discovers that Noah's birth story is believed to be the first record of a baby born with albinism, and that the Kuna people in Panama revere members of their society with albinism, seeing them as defenders of the moon in the night sky. She attends a gathering of people with albinism in St. Louis and interviews geneticists, social scientists, novelists and folklorists in Canada, England and the US. But when she uncovers information about gruesome attacks on people with albinism in Tanzania, rooted in black magic, she feels compelled to travel to East Africa, her sun-shy toddler in tow, in an effort to understand these human-rights violations.

While navigating new territory as a first-time parent of a child with a disability, Emily embarks on a three-year journey across North America and Africa to discover how we explain human differences, not through scientific facts or statistics but through a system of cultural beliefs. Part parenting memoir, part cultural critique and part travelogue, Beyond the Pale, as the title suggests, takes the reader into dark and unknown territory in the search for enlightenment.

Published Reviews
Booklist Review: "Folklorist Urquhart writes poetically and movingly about her daughter, Sadie, who was born with albinism. This genetic condition, which prevents pigment from forming in the skin, hair, or eyes, is so rare that it appears in just one in 17,000 Americans. Urquhart expertly weaves together anecdotes about Sadie and facts and beliefs about the condition. Some cultures revere people with this recessive trait, while others consider them evil. (In parts of Africa, people with albinism are mutilated and murdered.) Parents of children with other disabilities will identify with Urquhart, who hears well-meant but still hurtful comments from people who tell her that the diagnosis could be worse. She also wonders whether her daughter will ever want to take the drug nitisinone to try to augment her pigment and improve her eyesight. Urquhart beautifully chronicles the unconditional love she and her husband have for Sadie. I knew my daughter was extraordinary, she writes. What I didn't know then was that all parents feel this way about their children. Readers will weep and smile.--Springen, Karen Copyright 2015 Booklist"
From Booklist, Copyright (c) American Library Association. Used with permission.
Publisher's Weekly Review: "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. (Apr.) © Copyright PWxyz, LLC. All rights reserved."

Additional Information
Subjects Urquhart, Emily -- Family.
Albinos and albinism.
Albinos and albinism -- History.
Publisher Toronto, Ontario :2015
Edition First edition.
Language English
Description 282 pages : illustrations (some color) ; 24 cm
Bibliography Notes Includes bibliographical references (pages 277-282).
ISBN 9780062389169
0062389165
9781443423564
1443423564
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