54. ‘Beyond the Pale’ by Emily Urquhart

Continuing my recent interest in non-fiction, I picked up Beyond the Pale by Emily Urquhart at my local library, after hearing it talked about a few times on YouTube. This is Urquhart’s account of giving birth to a daughter with albinism and learning to raise a child with a genetic condition.

Beyond the pale Emily urquhart albinism nonfiction
The subtitle of this book is ‘Folklore, Family, and the Mystery of our Hidden Genes’, which nicely sums up the major themes in this book. It was a shock to Urquhart when her first child was born with a shock of white hair, and through this book she explores her experiences during the first few years of motherhood: dealing with the initial diagnosis, researching the condition to find out exactly what it means for her daughter, and (because Urquhart is an academic in folklore) researching the stories and myths that have been told about albinism for centuries. Over the course of the book, Urquhart travels to Tanzania in Africa, where people with albinism suffer from frequent attacks and mutilations because certain people believe albino bones have healing properties. She also delves into her own family history to see if she can discover more cases of albinism in her history.

This is a really interesting book, not least because it explores a subject about which I knew almost nothing before. That’s appropriate, of course, because Urquhart also knew very little about albinism before her daughter, Sadie, was born, and so the lay person can read this book and see the transformation of the writer herself from a lay person into someone knowledgeable about the subject. My favourite parts were when Urquhart explored the folklore surrounding albinism and dismantled the stereotypes that have built up over centuries of misunderstanding. And, of course, the section in Tanzania made for very moving reading – reading about children who have suffered immensely, often not helped by their superstitious parents, is not easy.

However, I didn’t totally love this book. In places, I felt that Urquhart’s writing style was too flowery, too overblown. Some of her descriptions were beautiful, but sometimes they tipped over into trying to be poetic, and at times it rang a bit false and took me out of the narrative. Still, I can see what she was attempting to do: this whole book is about the interplay between science and story, and how the latter can shape the former.

Whether you have a prior interest in albinism, or you know nothing about it and want to discover something new (after all, isn’t that what books are for?), Beyond the Pale is worth a read.

“Medical facts can rarely offer the level of comfort that stories can… Here is the value of folklore: it gives shape to the unknowable.”

Have you read this book or are you planning to? I’d love to know your thoughts!

Want to read this? You can buy the book here.

What do you think?

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