The Next Chapter

Emily Urquhart on albinism, folklore and her daughter's future

When Emily's daughter was diagnosed with albinism, Emily turned to what she knew best: folklore.
Emily Urquhart's memoir, Beyond the Pale, chronicles life raising a daughter with albinism.

When Emily Urquhart's infant daughter was diagnosed with albinism, Emily and her husband Andrew embarked on a journey that took them deep into the human genome, along the far branches of Emily's family tree and halfway around the world to Tanzania, all in an attempt to better understand what their daughter's life might be like. Emily documents that journey in her book Beyond the Pale: Folklore, Family and the Mystery of Our Hidden Genes.


"I didn't learn for quite a while. In the hospital, she had this beautiful head of white hair. People were coming from across all the wards to see her but only because she was beautiful, not because there was a medical problem. And there wasn't a suggestion that there might a problem until one nurse asked the question, 'Is she an albino?' I said, 'No, of course not.' I rejected the idea completely. Even after she was officially diagnosed, I just assumed it was untrue. It took a little while to accept it and let it sink in and believe that was the truth. I put off telling people for a long time. When I finally told my mom, she had the most amazing reaction. She said, 'No one will love her any less.'"


"Folklore gives shape to the unknowable. Science can give you a reason how a genetic condition can happen in your family, but it can never tell you why. You can look to stories within your family for that answer, you can look to supernatural tales, you can look to legends. I think that's why people do that. Even if you do understand science, and you put faith in science, you are still always going to search for that 'why.' Folklore, the stories people tell to explain their world, answers that question."


"Some people have really beautiful beliefs about people with albinism. The Kuna people on the San Blas Islands have some really beautiful beliefs. They believe [those with albinism] are protectors of the night moon and they sometimes hold revered positions within society. But I also found some very terrible, very disturbing beliefs about albinism. In Tanzania, people with albinism aren't just ostracized, they are murdered, they are dismembered. Their body parts are sold on a gruesome black market to witch doctors, who use them in potions. These potions are purported to have magical components that will bring the person who ingests them luck in love and life and business."

Emily Urquhart's comments have been condensed and edited.