Thursday, March 5, 2015

The tales we spin about disability

By Louise Kinross

Beyond the Pale is a new memoir about raising a child with albinism. It's written by Emily Urquhart, a Canadian folklorist and writer who looks at how this genetic condition is explained through stories and science. Emily's journey begins and ends with daughter Sadie, whose newborn hair is described by nurses as “some white.” In the middle we meet academics, an author, activists, doctors and other people with albinism—including a 10-year-old Tanzanian boy whose arm was cut off and sold to witch doctors for its supposed magical properties. In each case, Emily documents the stories that unite these diverse characters with richness, precision, elegance and heart.

BLOOM: The book starts out with Sadie's birth story and how her white hair attracts attention at the hospital, but you perceive it as a sign of beauty and perfection: “My child is the fairest of them all.” You then learn the lack of hair pigment is a sign of albinism. I think as mothers we're wired to see beauty in our babies. Can you talk about what it was like to be given a picture of Sadie through a clinical lens?

Emily Urquhart: That’s such an interesting question. I looked at her and I saw her white hair and she did look different from other babies and I was very proud. She was a very beautiful baby and of course that didn't change, because we are hardwired to see our children as beautiful. The first suggestion that her hair was a genetic issue made me furious—that someone could suggest it was a problem, rather than purely special and beautiful. I couldn't see that.

It was a really rude interruption, but it was necessary and I understand why it needed to be said. Also, we wondered why none of the professionals had said anything earlier. I've never been able to track down the original pediatrician who saw her and I kind of wonder if she did know Sadie had albinism, but she chose not to tell me because it's a stable condition and our bonding was more important at that point. If that was her line of thinking, now, from this perspective, I'm really grateful to her.

BLOOM: What is albinism and how does it affects Sadie?

Emily Urquhart: It's a genetic condition inherited from both parents, so it's recessive. It's a lack of pigment, either very little pigment or no pigment, in the hair, skin and eyes. This means she's very susceptible to sun burns and people with albinism can develop skin cancer if exposed to sun on a regular basis. We're quite lucky in Canada, we're north, so that's not as much of an issue but we’re still careful in the sun.

People with albinism have low vision, which is usually around the legally blind mark. Their eyes develop differently in the womb and there is also a pigment issue. Light comes through the iris and the pupil, whereas in regular eyes the pupils regulate the light, so Sadie is photophobic and that also hinders her eyesight. It's not correctable.

If you watched Sadie you wouldn't notice it. She gets around pretty well but sometimes has issues with depth perception. If it's around dusk when there are no shadows she has difficulty knowing how far down a stair might be. If we're sitting at the kitchen table she can see me smile at her. But if I move to the far end of the table she stops seeing my facial expressions. If she's out playing she won't recognize kids unless they're very close, but she has excellent voice recall. A little voice will say “Hi Sadie” and I won't be able to see who it is and Sadie will say “Oh, hi Patricia.”

BLOOM: Why are there so many different cultural stories to explain children with genetic conditions or disabilities?

Emily Urquhart: Sometimes with genetic conditions it can manifest in people, superficially, looking similar, like with albinism or dwarfism, so the condition is clearly identified and people can attach stories to it. People tell stories about human differences and disability as a way of explaining why people exist the way they do. I think it is born of fear. What we don't understand we try to explain in our own ways. The way human beings explain their world is through stories.

BLOOM: At one point in the book you question what is more true: a genetic understanding of a child or a folktale. Can cultural stories be helpful to parents of kids who are born with disabilities?

Emily Urquhart: It depends on what culture you're from. For me, as a folklorist researching different cultures, I looked at them all—the good and bad—and the good evened it out for me. I was able to see that in some cultures people with albinism are viewed as important members of the society and even when it had to do with magic—and I know that can go into very dark places—some of that stuff is very beautiful and I did find it comforting.

As a parent of a child with a disability or genetic condition, you can start telling your own stories and make your own mythology. It can be really negative, or really positive. There's a lot of self-blame mythology with mothers—where you create this wild myth that you ate something or did something that gave your child a disability. You can spin your own mythology and make it positive: 'this child is in my life and this is what they've given me and this is why.' Sometimes that's spiritual, sometimes it's more supernatural, it depends on the culture you're born into.

BLOOM: I liked the European tale where a fairy comes and takes your 'perfect' kid and leaves you with a 'changeling.' It absolves the mother of guilt. You write that it was used to explain infants who have 'failure to thrive.' My son had that diagnosis, and the terminology for a parent is really destructive. What parent doesn't do everything in their power to help their child thrive?

Emily Urquhart: It suggests that you, the parent, are failing. Failure to thrive: It's so vague, but very menacing. The changeling story tries to take the blame off the mother, which can be a nice way of explaining the situation. We so often take on the role of blame and guilt. Even though rationally it's ridiculous, you still can't help but go there sometimes. With the changeling story you can say 'the fairies took the child that I had helped thrive, and they returned a fairy child in its place.Hopefully that child becomes the child you want, even if you believe it's a fairy child.

BLOOM: You note that many folk tales blame the mother for causing her child's disability—through thoughts she had or things she did. Why do you think those stories developed?

Emily Urquhart: I guess because women are already kind of mysterious when they're pregnant. Even now, as much as we know about pregnancy, it's still kind of wild that it happens at all. You develop a human inside of you. So I think there's a lot of pressure today, not just in the olden days, for women to be the ones to produce the perfect child. They take the hit if something goes wrong.

I remember reading a story in the archives of the folklore department at Memorial University about a woman who was scared by a seal when pregnant and the child was born with a mark in the shape of a seal. There are beliefs about cravings. If you crave food too much and give in, or if you don't, your child will be marked with what you're craving. Strawberries in the case of a strawberry mark or hemangioma.

It's about control, about trying to control women: 'That woman was obviously out of control.'

BLOOM: I think it is about control. That people feel more in control if they can pinpoint something in the mother that they don't see in themselves.

Emily Urquhart: People fear that it's going to happen to them, but then protect themselves by saying 'well, I didn't do that, so I'll be fine.'

BLOOM: It made me think that in some ways our public health messages about pregnancy—you know, Five Tips To A Healthy Baby—have perpetuated these folks tales that suggest women control the health of their baby.

Emily Urquhart: It's like the modern version of that in some ways. I thought of you when I was pregnant when coming across all of that literature again. In British Columbia the Ministry of Health gives pregnant women a kind of manual called Baby's Best Chance. You look at that kind of stuff and think 'I guess I was doomed from the beginning.'

BLOOM: You write about having a second child and the ethical dilemma of prenatal testing—which was real for you because your son Rory was born recently. Do you think the social pressure to have a perfect child is more acute now than in the past?

Emily Urquhart: Yes. In the book I interviewed a friend of mine who's a midwife and she said people think you have to get tested now. It's like there isn't another option. And when there's a known condition you get a lot of 'input' for sure. Lots of medical input, but also comments from everyone in your life. There was a one in four chance that my son would be born with albinism. I don't have a problem with having another child with albinism. There was a New York Times article that quoted a doctor saying that parents with known genetic conditions are playing Russian roulette by conceiving naturally and without testing. 

BLOOM: Isn't life Russian roulette?

Emily Urquhart: Even if you engineer every last bit, you're still not going to get that child you think you want.

BLOOM: You talk about seeing Sadie in other children with albinism—at a conference, and then in Africa. But the first time you google the word 'albino,' you read horrific stories of kids who've been attacked or killed for body parts. Can you explain what albinism means in Tanzania? 

Emily Urquhart: I wouldn't say this is a blanket belief. But there is a sort of cultural belief that people with albinism aren't actually human: they never die, they're living ghosts, they have magical powers in their skin and bones and witch doctors can turn these into potions that powerful politicians and business people use for good luck. Of course the beliefs of families who have children with albinism depend on each individual case. Sometimes parents are loving, and sometimes they are not. That’s when you have cases of infanticide and plots where fathers are involved in the poaching of their own children.

BLOOM: Reading the stories of the boys you interview, it's so gruesome that it's hard to imagine that it even takes place.

Emily Urquhart: It's so unbelievable that people have been skeptical when I relay these stories. Obviously it's happening. The United Nations has taken a stand against these brutal crimes and is putting pressure on the Tanzanian government to end this. Last month the United Nations High Commissioner for Human Rights Zeid Ra’ad Al Hussein publicly condemned the most recent attacks—both victims were children under four. It's getting worse because the country is going into an election, which means people will want more of the witch doctor's potion.

BLOOM: You include a statistic about how 92 per cent of Tanzanians believe in witchcraft.

Emily Urquhart: Witchcraft is a belief system that straddles all religions. You can be Muslim, Christian, or ascribe to an indigenous religion and believe in witchcraft at the same time. You can also believe in witchcraft but not practise it.

BLOOM: You meet a boy, Mwigulu, who had his arm cut off. You say he was the saddest person you'd ever met and he was only 10.

Emily Urquhart: It was surreal. My husband Andrew and I were standing there with these kids who'd come out to see us, these visitors from Canada. Mwigulu was so traumatized. You could sense that immediately. I'd read all of the reports, but because I'm not familiar with Swahili names, I didn't put it together that this was the same child who had been attacked the month before. Then the man we were with told us and I looked down and realized that his arm was missing.

He is suffering and terrorized because he has the same condition as my daughter. Knowing this, I definitely connect him with my child. I can't not connect in that way. Your mind goes there. To how his parents must feel. Mwigulu’s parents were supportive, but they had to give him up because they couldn't keep him safe at home. They had sent him away to a special school.

Not only do these boys stand out because they have lighter skin, but they are also clear victims of brutal violence, so people around them know this horrible thing happened to them and they may not know how to interact with them. How would that affect the child in terms of their identity and their feelings of self-worth? 

BLOOM: Your book is so vivid in its details. Do you write a journal or did you begin taking notes thinking that you would write this book?

Emily Urquhart: I took notes from the early days of Sadie's life. Initially it was for myself because as a journalist that's often what I do, especially when I'm trying to process something. It helps me remember details and also gives me distance. By the time I was in Tanzania I knew I was writing a book and I wanted to be careful about what I recorded. I wanted it to be accurate.

BLOOM: What do you hope people take from the book?

Emily Urquhart: A few things. I hope that people can relate to it in some way. We all have differences in ourselves or in the people we love. I'd like for a reader to be able to relate to what I've written and have it move them or stir them in some way and help them think about their own lives. Also, I really think it's important that we learn more about human differences in general. I liked the idea that I could educate people about something that my daughter has and will be dealing with for the rest of her life.

Also, I feel that we need to start talking about what's happening in East Africa. It's brutal and it's horrible and it's important that we not turn away from it. The world is starting to pay attention. I'd like to be a part of this global education, in any way I can—perhaps my book could garner a few more interested people who could work toward positive change.

BLOOM: There's a part in the book where you interview a young Nigerian woman with albinism who had moved to British Columbia. And she talks about how strangers are routinely puzzled by her and ask about her ethnicity.

Emily Urquhart: People of colour who have albinism are dealing with preconceived ideas about ethnicity. Very often they’re seen through a white lens. The woman you mention has people question her ethnicity. She'll say 'I'm black' but to the asker, she appears white. It can be hard for her identity-wise.

BLOOM: It seems like albinism sheds light on a lot of our beliefs about difference. How old is Sadie now and how is she doing?

Emily Urquhart: Sadie turned four in December. She loves drawing. That's her biggest thing right now. It's very visual, but she’s quite adept at rendering. She does have to put her face fairly close to the page, but her drawings are amazing. Her Grandpa is an artist. I wish I had a pair of glasses I could put on and see Sadie's world. I bet she has a whole different perspective.

She loves her scooter and she loves her brother. She'll come home from daycare and say “Well, I haven't had a chance to hold Rory once today. 

Beyond the Pale: Folklore, Family and the Mystery of our Hidden Genes launches in Canada on March 31 and in the United States on April 21.


I understand you would not want to be tested for albinism. But what about other genetic conditions with far more serious consequences? In many European countries women get tested irrespective or age and known genetic conditions, just to be on the safe side. Sure, you cannot control everything, but there are things you can control. If one considers terminating a pregnancy because of fetus anomalies as a feasible option, and can live with it, I don't see why not getting tested. Not everybody feels the same, not everybody holds the same convictions, not everybody wishes to raise children with disabilities, if there are ways to avoid it, and that should be respected. This is what living in a tolerant, pluralistic society means.

Agree. Even better is embryonic testing, now possible for many conditions, and discarding affected embryos. For example, I think it's immoral to knowingly bring a child into this world with a fatal condition that will make them endure horrible suffering.

Whoa, anonymous judgemental commenters. "This is what living in a tolerant, pluralistic society means"; pressure people who have a darn good idea what they're getting into to getting prenatal testing so that they get potentially get pressured into aborting? You call that tolerance? Really?? Been There, you know this is a site for disabilities tolerance right, not a eugenics site? Should we bring back the practice of starving babies with sugar water in the NICU? What about not even telling their parents they exist to "spare them the pain"? Geeze.

So on topic to the ACTUAL ARTICLE, its really cool rereading especially old Grimm and Anderson tales and being able to poke out actual illnesses in them and being like, oh wow! That kid sounds like they had autism. That kid sounds like they had epilepsy. That guy sounds like he had this particular form of cancer. Really cool!

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