Beyond the Pale by Emily Urquhart - Review

Book Synopsis:

The story begins on St. Stephen's Day, 2010, in St. John's, Newfoundland, when the author gives birth to a baby girl named Sadie Jane who has a shock of snow-white hair. News of the child's icy locks travels across the hospital, and physicians and nurses from all wards visit the unusually beautiful newborn as she lies sleeping in her plastic bassinet. The maternity-floor janitor, however, feels something is amiss. Her eyes wide, incredulous and panicky, the janitor asks, "Is she an albino?" The idea is immediately dismissed, but after three months of medical testing, Sadie is diagnosed with albinism, a rare genetic condition where pigment fails to form in the skin, hair and eyes. She is visually impaired and faces a lifetime avoiding the sun. She will always have the otherworldly appearance that drew the awestruck hospital staff to her side.

A journalist and folklore scholar accustomed to processing the world through other people's stories, Emily is drawn to understanding her child's difference by researching the cultural beliefs associated with albinism worldwide. What she finds on her journey vacillates between beauty and darkness. She discovers that Noah's birth story is believed to be the first record of a baby born with albinism, and that the Kuna people in Panama revere members of their society with albinism, seeing them as defenders of the moon in the night sky. She attends a gathering of people with albinism in St. Louis and interviews geneticists, social scientists, novelists and folklorists in Canada, England and the US. But when she uncovers information about gruesome attacks on people with albinism in Tanzania, rooted in witchcraft, she feels compelled to travel to East Africa, her sun-shy toddler in tow, in an effort to understand these human-rights violations. Upon her return to Canada she discovers a family photograph from the past that might illuminate her daughter’s present.

While navigating new territory as a first-time parent of a child with a disability, Emily embarks on a three-year journey across North America and Africa to discover how we explain human differences, not through scientific facts or statistics but through a system of cultural beliefs. Part parenting memoir, part cultural critique and part travelogue, Beyond the Pale, as the title suggests, takes the reader into dark and unknown territory in the search for enlightenment.

My Review:

3/5 stars. I have albinism, so I was excited to read a book about it, but I have very mixed feelings about this book. I loved half of it and really didn't enjoy the other half. The parts about raising a child with albinism, finding community, and advocacy were great and sometimes very relatable. However, all the parts about mythology and legends were very weird to me. There are snippets from this book I would share with someone, but I wouldn't recommend it as a whole because of my issues with it.

The early chapters, and every subsequent mention of these experiences, where the author talked about what it was like when her daughter was born felt very familiar to me. My mom has described extremely similar reactions that she had when I was born. Although I'm the one with albinism, these parts were relatable in a different way.

Another relatable aspect was the way that the light sensitivity and vision problems of albinism were described. To explain photophobia, it said, "it resembles those initial moments of squinty-eyed discomfort the rest of us feel when exiting a dark theater into the light of day." And generally, Emily wrote, "the pixels are bigger, the world is a little brighter, and while it is not blurry, the finer details are lost." It's always so hard to explain how I see to other people, so this book articulated it very well.

While most of the book was about the folklore and cultural beliefs surrounding albinism, there were some mentions of the science behind the condition. I enjoyed these explanations, and it even taught me a little bit I didn't fully know. I always love when I learn a new tidbit of information about something so familiar to me.

A big focus of this book was the violence that people with albinism face in African countries, most notably Tanzania. That's something I was already familiar with, and I'm so glad that this book continued to shed light on the issue. Despite my familiarity with it, there were some things that were new to me, such as the journalist who first raised awareness of the atrocities taking place, and the soccer team made up of people with albinism. Those were both very cool and made me want to know more.

In general, this book is a great example of advocacy. It talked about the struggles our community faces all around the world but ultimately showed that we're just regular people who can live normal, happy, successful lives.

Now I'll move onto the other bulk of this book's content, which I didn't like. Emily Urquhart's background is in folklore, so she researched and discussed the many myths and legendary views of the past about albinism. I know that there are a lot of false beliefs about what albinism is and what causes it, and they just make me sad. But in this book, there was almost an air of respect with which the author wrote about these myths. Instead of calling them inaccurate and dehumanizing, she found ways to relate to them. While she never outright praised these legends, she didn't condemn them, either.

I also had a huge problem with chapter 2 of this book. It very clearly showed the author's pro-choice views, which I disagree with. It talked about pre-screening your unborn child for disability and made it seem like it's a huge dilemma to choose to go through with the pregnancy if there is a disability. It's not a dilemma, because abortion should never be an option. The way the author phrased certain things, such as "potential human life" and "defective fetuses" further demonstrated the author's views. I hated this. As the mother of a child with a disability, she should have taken issue with this way of looking at it.

Content:

Language: h*ll, f*ck

Sexual Content: a mention of m*sturbation, a mention of fornication

Violence: Brutal stories of violence toward people with albinsim, such as dismemberment

Drugs/Alcohol: a mention of the author sneaking into bars and underage drinking as a teenager