Beautifully Different

An albino child’s mother explores this rare condition.

When Emily Urquhart’s firstborn dazzles the maternity ward with blindingly white hair, the child’s beauty triggers emotional, medical and family history consequences that Urquhart, with her unique credentials as folklorist and journalist, absorbs into the narrative DNA of Beyond the Pale: Folklore, Family and the Mystery of Our Hidden Genes. Step by step she records her mystification and education as she and her husband discover what it means to have a child whose skin pigmentation and eyesight will be a challenge to live with from hour to hour for the child’s entire life—and, of course, for theirs. Urquhart begins with her daughter Sadie’s diagnosis of albinism, then ventures with the family across North America, then with her husband to Africa, tracking both encouraging and harrowing stories of this almost mythological ocular and pigmentation disorder, even as she journeys in time back through generations of the Urquhart family. What makes the pilgrimage fascinating, even for a non-parent unfamiliar with albinism like me, is Urquhart’s cultural reportage. She pivots the memoir first toward a world perspective, then toward myth, history and genealogy.

Urquhart’s title, Beyond the Pale, displays a kind of genetic relationship to a work that opened cultural inquiry into the dynamics of families with exceptional children, Andrew Solomon’s Far from the Tree: Parents, Children and the Search for Identity. Solomon’s monumental book offers hundreds of pages of examples of how parents accept (or not), understand (or not), accommodate (ultimately) and deal with (inevitably) their exceptional children’s differences. Solomon’s exhaustive (and exhausting) perspective on the angst and vitality of these dynamics seeded the ground for more singular stories. Beyond the Pale is a happy part of this second generation. It is not a doorstopper but rather a guided tour of what happened after that shock of white hair.

At first Urquhart is teary, whiny and bewildered, a brand new mother thrust into a world of what a previous generation termed “albinos,” coping all at once with her husband Andrew’s views, her physician father-in-law’s long-distance diagnosis (he was right), her own resistance to the medical enormities facing her daughter, and her new parenthood. Most of all, she begins dealing with a vast legacy of prejudices and myths about albinism, and a network of physicians that lead her careening from the worst possibilities of the most damaged eyesight and skin to the somewhat more subdued realities of her startlingly lovely, rambunctious daughter Sadie’s particular situation: oculocutaneous albinism type 1 (OCA1), Variants A and B. Sadie will always blink at ordinary daylight as if it were the blinding light of curtains suddenly being opened, and she will never be able to leave the house without SPF 65 sunblock (reapplied multiple times as the day goes on) or even be settled into her stroller without black nylon shade covers.

Urquhart’s own journey from the whimpering newbie mommy (with a few too many whimpers for my taste) worrying about whether to take her toddler on a trip to Africa (don’t do it, Emily!) to the increasingly stout-hearted, gently worldly and sometimes gimlet-eyed woman and mother she becomes anchors the book, proving in her own way that a single example displays a world. That world opens up with the family’s first NOAH (National Organization for Albinism and Hypopigmentation) conference, where they, as “pigmentos,” introduce their tiny daughter to other children with albinism, finding an extended family.

Then their transformative trip to East Africa sets the double helix of the personal and the cultural spinning. In Tanzania, Urquhart and her husband dive into the plight of African children with albinism, “ghosts” from whom pregnant women turn instantly away for fear their unborn children will be stricken, and where a ghoulish trade in body parts is conducted for those who believe, as witch doctors still do, that the organs and bones of “ghosts” can bring good fortune. “It is a gruesome arithmetic,” Urquhart writes, “a femur, a hand, a finger, each had a price.” But it is also in the experience of Tanzania where the sheltered writer and her story grow up. There Urquhart witnesses a boy with albinism struggle without two fingers and a thumb, his parents having commissioned his mutilation by a body part hunter who, in attempting to hack off his arm, came away only with parts of the hand. Mommy woes and Canadian medical system cavils vanish in the face of living folklore as terrifying daily reality.

The fact that most readers would recognize her family (the author is the daughter of one of Canada’s revered art world couples, novelist Jane Urquhart and painter Tony Urquhart) puts Emily Urquhart in the unique situation of provoking the question that underpins Beyond the Pale. How, genetically, did this child, who must swim in a complete body suit and wear sunglasses not as an adorable accessory for a toddler but as an extreme necessity, come to be born with albinism in the first place? The genetic detective work, suited to Urquhart’s academic background, ingeniously tracks and solves this mystery. A murky photograph of two women with grey? blond? sunstruck? white hair unearthed from a family album suddenly unlocks a door in the wall of family history. Urquhart’s research reveals a legacy resulting from two third cousins on her father’s side of the family who marry in 1891. This discovery deepens her connection to her father, who reconnects to past generations of his family, and ties his daughter and granddaughter to a redoubtable woman, Urquhart’s great-great aunt, Rosella Morse. Aunt Rosella, who married her third cousin Arthur Spencer, gave birth to five daughters, four with albinism. “I see my daughter in every one of the girls—in their eyes, faces, eyelashes, glasses, hair, and lovely little hands. In Rosella,” Urquhart writes, “I see myself.”

If books like Andrew Solomon’s Far from the Tree or Rebecca Skloot’s The Immortal Life of Henrietta Lacks are suns in the galaxies of nonfiction about genetic consequences and complexities, then the more singularly focused Beyond the Pale is a moon. But as every watcher of the night sky knows, the phases of the moon remain emotionally compelling to the poet in us, and so does Urquhart’s tale of the acceptance of her ebullient, flourishing child, closeness to her persevering husband and deep reconnection to her forebears from 19th-century Niagara Falls, Ontario. As she delicately handles ancestral research back through 18th-century New England and interprets how folkloric characters such as giants now have scientific verification, Urquhart breaks out of her serviceable prose and seems almost to paint her book. One of the most moving scenes is a picture of her father who has set up an easel for his granddaughter so that they might sketch side by side. Are the images that her sight-challenged daughter produces so similar to her father’s images because of a genetic link? Urqhart toys with the idea, then shelves it, turning to harder data. Though Beyond the Pale begins with her mystification, it ends with a moving consideration of how one mother has come to view her daughter’s disability as a deep connection to family folklore, making Sadie an exemplar herself.