First novel explores Down syndrome

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September 12, 2013

Edmonton author Theresa Shea was born in Maryland and raised in several places in the United States. In 1977, she moved to Canada. She has published poetry, fiction, essays reviews and articles in a number of magazines and journals. Earlier this summer, Edmonton journalist Elizabeth Withey initiated a Question and Answer exchange with Shea about her first novel, The Unfinished Child (Brindle & Glass, $19.95). Here is an edited version of their conversation.

What motivated you to write this book?
I got pregnant with my first child when I was 34. I was going to be 35 when the baby was born. I didn’t understand that 35 is the marker for the medical community to put a big red risk stamp on your file, and doctors are legally bound to give you the genetic-counselling talk. I was so unprepared for that. After I gave blood, there was a message from the doctor’s office to call but it was closed. I spent the weekend convinced there was something wrong with our baby. I had a one-in-268 chance, instead of the normal. I remember being outraged: you have wrecked my pregnancy. I felt like I’d been robbed.

What did you learn from that?
What I realized is that doctors have to look for what’s wrong; that’s part of what they do. I decided to get a midwife; they tend to look for what’s right. I didn’t see doctors for [the births of] my other kids. My husband and I, we’re moral cowards. We decided, we didn’t want to have to make a decision. This is a very different decision from abortion. My children were all wanted; we planned to have these kids. This is the first time in human reproduction we have choices about the children we’re having. It’s worth a larger discussion, and we’re not really having it. Is it better to know in advance? Are we hardwired to know these things? I think we rise to the occasion when we have to; I’m not so sure we do it so well in advance. I worry about human compassion. Compassion is a muscle that needs to be exercised. If you eliminate those contact moments when you see people who are less advantaged, then compassion becomes weak. What are the ramifications of a less compassionate society?

What was that the Down syndrome community’s reaction to your book?
Really, really positive. I don’t have a child with Down syndrome . . . I’m humbled about how it’s been received. It’s a hard read. The Down syndrome population has been hugely reduced in size because of technology. So if you bring a child into the world knowing already that its number has been reduced, that’s a painful thing. Most parents are going to love that child, but the greater fear is that the culture doesn’t. People in the Down syndrome community want their stories to be told.

Have you had any negative feedback?
Many readers are mad at me for a decision that one of the character makes. People are very upset. I think that’s wonderful. That tells me something. I think the human ability to love and care is vast. Vast. The function of art is finding moments that make us want to become a better person, that make us think: I’m a shallow person, I need to be better. We deprive ourselves of those moments when we can become better people. This isn’t only about Down syndrome. It’s about any condition, any abnormality.

What was your goal with The Unfinished Child?
What I wanted to do [was] create likeable characters and put them in difficult situations. The book loosely gives the history of automatic institutionalization, then this nice integration period and now, the phase of termination. The storyline juxtaposes the different choices and the emotional fallout, no matter what decision you make. I remember someone once said, “What’s better: to be stabbed or shot?” It hurts, no matter what. Ultimately, with the book I wanted to start a conversation. Life is risky; bringing children into the world is risky. Technology . . . allows us to have more say, to have more control. Is this positive? Is this negative? It concerns me. Are we engineering children in the right way?”
This isn’t a “have a baby at any costs” book. My book is about love, the power of love. People can read my book and know they’re not alone. If I’d had a baby with Down syndrome, I know I’d have loved that baby. If I have an agenda at all, it’s to infuse a more human element into the prenatal testing arena. When you move from the general (people) to the specific (a character), then the full ramifications of people’s decisions become more poignant. . . . I still cry when I read from [the book]. I think, oh for God’s sake, I know how it ends! The doctors weren’t evil people, the parents weren’t evil people. It’s just so moving.”

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