Beyond the Pale: Folklore, Family, and the Mystery of Our Hidden Genes by Emily Urquhart

Stars: ****

Harper Perennial (2015)
Memoir
288 pages

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Summary: 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.

Beyond the Pale

I picked this book up because I thought it was 100% memoir of a family with a child with albinism and it is, but it’s a little different from what I was expecting. For sure she shares memories of her child being born, what happened after and memorable parts of her first 3 years. However it’s also about the folklore of albinism and the genetic of albinism.

The author is a folklorist and so is familiar with the folklore surrounding albinism but studies it further since her child was born with it. It’s interesting but I found the genetics behind it more interesting. She shares how she tracked her genealogy and what she found. So it’s a memoir of parenting a child with albinism but it’s a memoir of tracking family history and of visiting other people with albinism from around the world including Africa and at parts, read more like a journalist article. It wasn’t bad though, just different.

If you have a family history of albinism, know someone with albinism or are concerned about what’s going on with Africa with those with albinism this book is for you.

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