On Boxing Day 2010, Emily Urquhart gave birth to a chubby baby girl named Sadie “with perfectly formed features and a shock of white hair on her head.” Sadie’s snowy cap became a cause for curiosity among the St. John’s hospital nurses, who found excuses to visit the infant even when they had no services to offer.
After a flurry of specialist appointments and tests, Sadie was diagnosed with albinism – a genetic defect characterized by a lack of pigment in the eyes, skin, and hair that can lead to health problems such as low vision and skin cancer. In response, Urquhart began researching everything she could find on her daughter’s condition. She couldn’t help herself: after all, she is a trained journalist who, at the time, was at Memorial University completing her Ph.D. in folklore, the study of cultural practices and beliefs.
After Sadie turned one, Urquhart wrote an essay about her daughter’s albinism for The Walrus. “I started to do the research for that piece, interviewing and writing, and I realized that I wanted to keep going,” she says from her home in Victoria. “About halfway through, even before I handed it in, I knew that I wanted to write a book. I couldn’t let it go.”
By the time the essay was published in 2013, Urquhart was in Tanzania, where albinism rates are among the highest in the world, and where those afflicted face atrocious violence – they are hunted for their lucrative body parts, which are thought to contain healing powers. After much personal debate about whether to take her young daughter overseas, the decision was made to leave Sadie home with her CanLit-famous grandmother, Jane, while Emily met with African non-governmental organizations, activists, and people with albinism in hopes of understanding the genetic disorder.
While Urquhart’s Beyond the Pale: Folklore, Family and the Mystery of Our Hidden Genes (HarperCollins Canada) was inspired by one tiny girl, the book covers broad ground. It is the honest memoir of a loving and protective mother who confesses her conflicted feelings about whether to have another child. (On Jan. 7, Urquhart delivered Sadie’s healthy baby brother, which she discusses in the book’s afterword.) It also serves as an homage to survivors of horrific violence, and, in what seems to be especially prevalent these days, a study of how long-held cultural beliefs drive the idea of difference, or “the other.”
Beyond the Pale also tracks Urquhart’s emerging identity as an international albinism activist, even if she is reluctant to call herself one. “I don’t know if I’ve earned the title of activist in this realm, but at the same time, I do feel strongly about what’s happening in East Africa. I want people to know about it, and I do hope that my book can spread the word and awareness,” she says. “I want to take every opportunity to talk about it. I am really committed to getting the word out.”
The story’s final layer is threaded around an old family photo from more than 100 years ago, in which it appears that two of Urquhart’s forebears may also have had albinism. The discovery adds an element of mystery – according to her geneticist, tracing gene mutations through lineage is very rare – as Urquhart obsessively attempts to uncover the backstory of these two women.
“I was consumed by it,” says Urquhart. “I’d already been to Tanzania, when my parents suddenly tell me about this picture. I needed to have the answers, which then became the third part of the book. I needed to know who they were, and I needed the personal connection and confirmation in order to complete the story for myself.”