Beyond the Pale: Folklore, Family and the Mystery of our Hidden Genes

Beyond the Pale: Folklore, Family and the Mystery of our Hidden Genes

Reviewed by Hilary Levey Friedman

unnamed-5You know the phenomenon where as soon as you learn a new word, or hear about a new activity or condition, it seems like it is suddenly everywhere? This is what happens to Emily Urquhart when her daughter, Sadie, is born on December 26th in Newfoundland.

Sadie is diagnosed with albinism[i] and Emily begins to notice albinism all around her—in the news, in family photos, and in pop culture. For example, have you ever noticed that the villains in The Da Vinci Code, The Matrix Reloaded, and The Princess Bride have albinism? After making this connection Urquhart observes, “Despite our perceived modernity, much of our faith and knowledge is wrapped up in make-believe.”

Urquhart is uniquely suited to make this observation because not only is she Sadie’s mom, she is also a folklorist. Beyond the Pale is the beautiful product of her merging together two strands of her life. She explains: “I study folklore, the intimate truths we reveal through the stories we tell. Legends, fairy tales, and beliefs are the screens onto which we project our fears, hopes, secrets, and desires. After my daughter was born, I felt that knowing the cultural tales about people with her condition, whether they were frightening or beautiful, would help me understand the shape of her life.”

As you can tell from these lines Urquhart is also a master storyteller, choosing evocative words to describe situations that are both knowable and unknowable to all parents. After officially receiving Sadie’s diagnosis (which is neither terminal nor degenerative, but means a lifetime of limited vision and being careful in the sunshine), which she sees as succumbing to her DNA, Urquhart dives into medical journals and parenting memoirs. It is some time before she can return to fiction but when she does so she hones in on the importance of stories: “Science can tell you how genetic anomalies and birth defects happen, but not why they happened… Here is the value of folklore: it gives shape to the unknowable.”

Over the course of Beyond the Pale Urquhart takes the reader on a few journeys—actual physical ones. In one the family of three goes to St. Louis for a conference on albinism that gives Urquhart confidence in Sadie’s future (like her ability to drive someday and make friends without fear of being bullied). In another she goes to Tanzania to help children with albinism who are being brutally attacked for their limbs, which some believe to have “magical powers.” (I found this to be the weakest entry in Beyond the Pale. While these are atrocities that need to be shared, the travelogue here was not as well integrated with Urquhart’s family story which ultimately is at the heart of the book.) Finally Urquhart goes with her father to Niagara Falls to meet and reconnect with old family members, who it turns out are the children of a number of aunts with albinism.

In Sadie’s young life she intersects with many people due to her relatively rare genetic mutation, some who are family and others who are part of the medical profession. In an observation that will resonate with all parents Urquhart says that one of Sadie’s doctors will, “always be a central character in the story of Sadie’s life.” Most parents will always recall the doctor who delivered their child, or their pediatrician; but that doctor more than likely will not remember.

In the end, in trying to suss out her story, Urquhart discovers that her network and story are less complicated than she once thought. In her own words: “It took a long time to distill out story into those five words: It runs in the family.” In weaving together genetics, folklore, travel, and parenting memoir Urquhart has used her strong voice to create a story that will stay with the reader in many ways for a long time. And she provides a new model for albinism beyond the pale villains in fictional thrillers: her spirited, fair daughter, Sadie.

[i] Urquhart explains that use of the term “albino” is no longer considered polite, so I use the term “albinism” here.

Hilary Levey Friedman, PhD is the Book Review Editor Brain, Child and the author of Playing to Win: Raising Children in a Competitive Culture. She teaches in the Department of American Studies at Brown University.