27 May 2019

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

Beyond The Pale: Folklore, Family and the Mystery of Our Hidden Genes by Emily Urquhart book cover
Albinism is a rare genetic condition where pigment fails to form in a person's skin, hair and eyes. Those with albinism suffer from poor vision and sensitivity to the sun, often developing skin cancer.

When Emily Urquhart gave birth to a daughter with albinism in 2010, her life took an unexpected turn. Living in Canada, Urquhart set out determined to learn everything she could about the condition, and the implications for her daughter's health and wellbeing in the years to come. Beyond the Pale is Urquhart's memoir of this period of discovery and as the blurb says, it is part memoir, part cultural critique, and part genetic travelogue.

Urquhart consulted a myriad health professions and attended the NOAH (National Organization for Albinism and Hypopigmentation) conference in the USA. She travelled to Africa to meet children with albinism and hear about their traumatic experiences first hand.+

Urquhart is a folklore scholar and journalist and I was very interested in reading about the superstition and folklore surrounding albinism in different cultures and across time. Unfortunately there just wasn't enough and given this was the primary reason for my reading, I was deeply disappointed.

The last section of the memoir covered Urquhart's efforts to map her family tree and trace the albinism gene back through the generations. She shares all the ins and outs of her family tree and I quickly lost interest in this geneology deep dive.

In hindsight, I think I'd have been better off spending 30 minutes learning about albinism online, rather than reading this specialised memoir. It really wasn't for me.

Recommended reading for:
- memoir lovers
- parents who have a child with albinism
- those with an interest in geneology

My rating = **

Carpe Librum!

In Tanzania, 1 in every 1429 babies born have albinism and the population believes those with albinism have magical powers. As a consequence, those with albinism are often hunted and their body parts are sought after for use by witch doctors to heal the sick. Tragically, it is sometimes the family members who offer their children to the albino hunters in return for money. Not something Urquhart's beautiful daughter Sadie will ever have to worry about.

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