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Beyond the Pale Author on Raising a Child With Albinism

A few weeks after her birth, Emily Urquhart’s beautiful, white-blonde baby daughter was diagnosed with albinism, prompting Urqhuart to embark on a journey that led her all the way to Tanzania. Here, she recounts the experiences that sparked the idea for her newly released book, Beyond the Pale

Motherhood is a risk undertaken by a diverse population; fortunately, unlike other gambles, motherhood’s inherent risks are proportionate to its rewards.

Reward No. 1: you get to have a child.

Urquhart, Emily Beyond the Pale albinism

Emily Urquhart (Photo: Andrew Trant)

In her new book, Beyond the Pale, Victoria, B.C.–based journalist and folklore scholar Emily Urquhart shares her own experience with motherhood’s risk-reward ratio. In 2010, Urquhart gave birth to her first child, Sadie. Her remarkable white hair was the first clue that there was something different about her daughter. A few weeks later, Urquhart and her husband learned the reason: Sadie had albinism.

Urquhart’s journey to understanding her daughter’s albinism and its genetic origins takes her to some unexpected places—including Tanzania, where she bears witness to the horrible injustices inflicted on those born with albinism; human rights abuses that include torture, maiming and even murder.

We talk to Urquhart about what prompted the book, what she hopes to achieve by educating readers on this misunderstood condition, and the pressure to have perfect children.

How soon after Sadie’s birth did you begin writing Beyond the Pale? Almost right away. Two weeks after her birth, my father-in-law, who is a physician, arrived and suggested she might have albinism. At this point I wasn’t writing a book, I was just jotting things down to process what was happening. But once I started going to physician’s visits and things like that I would kind of go into journalism mode so that I could distance myself from what was happening. Eventually I started writing on a deeper level and I knew that first I wanted to write a long-form piece [that article, The Meaning of White, appeared in The Walrus in 2013 and won silver in the personal journalism category at the National Magazine Awards].

How did the book emerge? Right after handing in the first draft of the Walrus article, my husband and Sadie and I went to our first NOAH conference, the National Organization of Albinism and Hypopigmentation, and that was so intense. I started hearing a lot of other people’s stories that I found really interesting and that I thought others would as well.

What was the most challenging part of writing the book? Beyond childcare? Probably the parts about Tanzania were the hardest because it’s such a horrifying topic, it’s so upsetting, it’s so deeply troubling and in some way has a connecting thread to my life and my child, and so initially when I was reading about the reports I had no desire to go any further. But eventually I couldn’t turn away. It felt too important, it felt like I had—maybe a mission sounds too grand—but I did have an opportunity to talk about what was happening in Tanzania and I had to go there to do that and properly report on it. Definitely being there, seeing the kids who’ve either been abandoned or who have been attacked and survived—and also reading about the murders—was the most difficult aspect of researching the book. It was also really hard to write about. It was emotional.

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For me, the book really touches on the reality of motherhood. It’s a risk and it always comes with some surprises. Were you consciously trying to present a more realistic portrait of motherhood, and by extension, of life in the book? Yeah, definitely. I think mothers tend to take the blame or feel the guilt when something isn’t going exactly as expected with their children—even though you don’t have any control over that. That is definitely a theme that I wanted to portray throughout the book, that there is always a risk and that generally when it doesn’t go well, people look to the mothers and try and rationalize it through her behaviour: ‘I wonder what she did during the pregnancy?’

In an early part of the book, in relation to genetic testing, you ask, “Why do we…care about the societal pressures to have perfect children?” I’m not against genetic testing. I think it’s anyone’s choice to test—and do with that information what they want to do—but it is kind of dangerous. I didn’t know anything about albinism at all, and if it had been described to me before I had had my daughter, I don’t know what I would have done about it. It could have changed the trajectory of my life in a really negative way because my daughter has albinism but that’s just one facet of who she is. She’s also this amazing, wild, very funny little girl who is the centre of my universe.

What do you hope the book achieves for people with albinism? And in terms of education about albinism?  I do hope it helps to educate people about the realities about living with albinism. The [low] eyesight issue is something people generally don’t know about… I think that can only be helpful for my daughter’s life. The more people know about it, the less likely it is that she’ll have to face stereotypes and challenges. I also wanted to write this as a way to relate to people in general, definitely parents and maybe children who have some form of difference that they’re dealing with in their life.

I also really wanted to talk about what’s happening in Tanzania. Despite how horrifying it is I thought it was really important that I find a way to communicate what’s happening there. It’s not going to change it but it might work towards change. And then in the end, I wanted to write a story that people could read and enjoy—and walk away with something that maybe they had never thought of before.

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