Beyond the Pale

March 23, 2015
This somber, studiously plotted memoir tracks how a Canadian couple came to terms with their daughter's rare genetic condition and devleoped a larger, universal sense of familial belonging. The author, then a graduate student in folklore, and her husband, Andrew, a biologist, lived in Newfoundland when their daughter was born in 2010. Sadie had a shock of white hair and low vision in her extremely sensitive eyes, confounding manifestations of what a geneticist finally diagnosed as albinismâa condition that can be passed down "silently for centuries" because it requires a recessive gene carried by both parents. After initial stages of denial, Emily and Andrew consulted "a slew of specialists" from Toronto to Victoria, where they relocated for Andrew's work, and had Sadie fitted for special glasses. They also began to network with other parents, tapping into the National Organization for Albinism and Hypopigmentation (NOAH) at a convention in St. Louis, Mo. After they learned of horrific stories of brutalization of people with albinism in rural Tanzania and elsewhere in Africa, they ventured to Dar es Salaam to visit some of the victims, who were sheltered by the Under the Same Sun organization. In addition, the author perused her own family history seeking the early carriers of the genetic condition. This memoir is tediously crammed with both a dire sense of global discrimination and an intensely personal focus.