Emily Urquhart

After her daughter was born with albinism, Emily Urquhart began researching the genetic condition through the lens of her own field of study, folklore. She looks at historical western folklore, for example, people with albinism in "freak shows" or remote communes (there are stories like this for many conditions with particularly recognizable phenotypes), and the heartbreaking contemporary stories from Tanzania of the power and wealth to be attained through magic done with the body parts of a person with albinism. These tales are widespread and directly contribute to the kidnapping, mutilation, and killing of people with albinism, which has only recently been acknowledged and fought against; the first conviction for such a crime was in 2009. People with albinism have been seen as ghosts, angels, and bad omens throughout history. Urquhart also looks through her own family's history to track the gene for albinism through the generations, finding pictures and stories to link her daughter with her family from 100 years ago. I really love the approach of juxtaposing folklore and storytelling alongside history and science - it always makes for a very interesting perspective on any topic, and this one in particular.… (más)

Albinism is a rare genetic condition where pigment fails to form in a person's skin, hair and eyes. Those with albinism suffer from poor vision and sensitivity to the sun, often developing skin cancer.

When Emily Urquhart gave birth to a daughter with albinism in 2010, her life took an unexpected turn. Living in Canada, Urquhart set out determined to learn everything she could about the condition, and the implications for her daughter's health and wellbeing in the years to come. Beyond the Pale is Urquhart's memoir of this period of discovery and as the blurb says, it is part memoir, part cultural critique, and part genetic travelogue.

Urquhart consulted a myriad health professions and attended the NOAH (National Organization for Albinism and Hypopigmentation) conference in the USA. She travelled to Africa to meet children with albinism and hear about their traumatic experiences first hand.+

Urquhart is a folklore scholar and journalist and I was very interested in reading about the superstition and folklore surrounding albinism in different cultures and across time. Unfortunately there just wasn't enough and given this was the primary reason for my reading, I was deeply disappointed.

The last section of the memoir covered Urquhart's efforts to map her family tree and trace the albinism gene back through the generations. She shares all the ins and outs of her family tree and I quickly lost interest in this geneology deep dive.

In hindsight, I think I'd have been better off spending 30 minutes learning about albinism online, rather than reading this specialised memoir. It really wasn't for me.

Recommended reading for:
- memoir lovers
- parents who have a child with albinism
- those with an interest in geneology

+ In Tanzania, 1 in every 1429 babies born have albinism and the population believes those with albinism have magical powers. As a consequence, those with albinism are often hunted and their body parts are sought after for use by witch doctors to heal the sick. Tragically, it is sometimes the family members who offer their children to the albino hunters in return for money. Not something Urquhart's beautiful daughter Sadie will ever have to worry about.… (más)

Urquhart is a journalist and a folklorist when her first child was born in 2010. Little Sadie's shock of white hair caused quite a stir in the Newfoundland hospital where she was born. As Emily was soon to learn, Sadie was born with a genetic condition called Albinism, something Emily and her husband knew nothing about. This book chronicles Emily's search for knowledge, so that she and her husband can ensure that Sadie's life be as safe and as *normal* as possible but also, Urquhart wanted to learn as much about the culture of Albinism from the folklorist perspective as well. What she learned took her to Tanzania, where people with this condition are often tortured and targeted. There she discovered an organization that provides support, schools, soccer teams and help for the victims of such terrorism. Back home, Emily becomes involved in the communities of Albinism in North America and learns as much as she can to support and provide for Sadie. People with this condition often have low vision, among other medical issues.

Along the way, Emily learns that Albinism is an inherited condition and so she begins to research her family tree, to try to discover where the latent genes came from. I found this part of her search and her story particularly interesting. Living in this millennium certainly helps a lot, what with DNA testing and geneology sites. There are also photos in the book and as she unravels the strands of the stories of her father's family, bits of wisdom and insight emerge.

"It's a little like learning the wonder and the intricacies of genetic science, accepting that you don't know why this happened but you do know how, and then moving on."

"You said that life then and life now is like walking in the woods before and after studying biology, right?" I ask. "Yes, before you know about plants, you can walk into a forest and see it all looks green," Andrew says. "It can still be moving and beautiful, or at least enjoyable, but a million stories go untold. Maybe you notice different shades, or that some plants are tall and others are small, but you don't differentiate species. In a sense, learning the plants - their names their habits, their needs, and their dependents - is like learning how to read. And once you learn the plants, you can't return to seeing them as nameless greenery."

"In the beginning, it had been impossible to see the outline of our daughter's future because it in no way resembled our pasts. We wanted to be the best parents for her but, startled, and with no map, we didn't know how. In his book Far From the Tree, Andrew Solomon uses the term *horizontal identity* when referring to children who are different from their parents. In these instances, mothers and fathers are forced to rewire their default versions of the world. When our daughter was born, Andrew and I needed to relearn how to see. Like my dad's art students, we needed to understand perspective in order to make sense of the view."

Anyhow, I just really enjoyed going on this journey with Emily and Andrew and Sadie. As an aside, Emily's mother is Canadian author Jane Urquhart, and I have read a few of her books (fiction) and really liked them, too.… (más)