Beyond the Pale: Folklore, Family, and the Mystery of Our Hidden Genes is a work of non-fiction by folklorist Emily Urquhart about albinism, based on her personal experience raising a daughter diagnosed with the rare disorder in 2010. Urquhart's memoir is part parenting book about the challenges of raising a child who not only looks different from her peers but also suffers from partial blindness and other disabilities, and part folkloric examination of the history of albinism, and its global interpretations. The book takes place over Urquhart's three-year investigation of the condition, providing a multiplicity of perspectives on albinism from the eyes of a loving mother. Urquhart begins her memoir with a simple statement about her knowledge of albinism after the birth of her first daughter in 2010. She remarks, “My daughter was born with a genetic condition I knew nothing about.” Urquhart tells the story of her daughter's birth – she was a beautiful and healthy baby, with milky white skin and bright, platinum blonde hair. The nurses remarked at the blondness of her daughter's hair, but it wasn't until a janitor saw her baby and asked about whether or not she was albino that Urquhart began to wonder about her daughter's complexion. People with albinism, as Urquhart soon learned from doctors and genetic specialists who study the condition that affects around 17,000 people worldwide, is the result of a genetic mutation shared by both parents, that causes a lack of pigmentation in skin and hair, partial blindness, sun sensitivity, and high rates of skin cancer. Confused and ignorant about her daughter's condition, Uruqhart decided to embark upon a three-year study of albinism, from folklore to contemporary film, to better understand the struggles her daughter would face because of her condition. In each chapter, Urquhart explores a different facet of or story related to albinism. She talks about attending a conference about albinism for parents and their children, during which she was startled by the plethora of white canes used by children to find their way. She talks about the mistreatment and isolation her own daughter experienced because of her appearance and her blindness, and also writes extensively about Tanzania, a nation with an abnormally high percentage of people diagnosed with albinism. Urquhart shares Tanzanian belief systems, some of which indicate that albinism is a gift from god or mark of special powers, and others which believe albinism is a curse, or gives the afflicted person witch-like powers. After moving to Victoria for her husband's work, Urquhart met a boy with albinism from Tanzania who was missing three fingers – frequently, Tanzanians with the condition are targeted, raped, murdered, and/or dismembered, their body parts sold as healing talismans on the black market. Appalled by this practice, Urquhart felt compelled to study it further – she and her husband took a trip to Tanzania to meet with those who could illuminate more about Tanzanian interpretations of the disease. Urquhart also talks about the medical treatments that are being developed for people with albinism, including pigmentation treatments, which she learned would not work for her child. She also writes about the various villains and heroes that have albinism in literature and movies, including Noah from the Bible, whom some people believe had the condition. Urquhart ends her memoir with a challenging question about the ethics of having another child, knowing that she and her husband have a one in four chance of conceiving a second child afflicted with albinism. She also writes about her daughter's unique beauty, becoming a spokesperson for those afflicted with the disease, and dispelling common myths about her daughter's physicality while celebrating her unique contribution to the world. Beyond the Pale: Folklore, Family, and the Mystery of Our Hidden Genes was a Maclean's bestseller, a finalist for the BC National Award for Canadian Non-Fiction, and listed as a “best book” by a number of journals around the world. Working as a freelance writer, she has had shorter works featured in Hakai Magazine, Reader's Digest, and elsewhere. She currently lives in Kitchener, Ontario with her husband and two children.

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Emily Urquhart

Adult

Autobiography / Memoir

Nonfiction

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