Thursday, November 17, 2011 |
The panelists are in the process of deciding which book they want to bring into the ring for the February debates. We'll reveal who they are — and the titles they choose — on November 23 on CBC Radio's Q and right here on CBC Books.
In the meantime, we want to introduce you to the authors you voted onto the Canada Reads: True Stories Top 10 list.
Today, meet Ian Brown, author of The Boy in the Moon. He dropped by Q in 2009 to talk about the book and about the challenges — and rewards — of bringing up a disabled child. You can listen to his conversation with host Jian Ghomeshi in the audio player below.
The Toronto-based journalist and author is a feature writer for the Globe and Mail and the host of two programs on TV Ontario. He has published three books of non-fiction: Freewheeling: The Feuds, Broods, and Outrageous Fortunes of the Billes Family and Canada's Favorite Company, Man Overboard: True Adventures with North American Men and The Boy in the Moon, his 2009 account of life with his second child, Walker, who has a rare genetic disorder. It won three major literary awards: the B.C. National Award for Canadian Non-Fiction, the Charles Taylor Prize and the Trillium Award.
Brown says that he felt compelled to write the book. "I began to take notes just after Walker was born, when we couldn't figure out what was wrong with him...and I just kept keeping those notes. And as he got older and I began to realize how extensive his syndrome was, I began to ask myself what the value of his life was."
Because of his disabilities, Walker can't communicate in the way that most of us do, but Brown nevertheless wanted to understand his son and figure out what meaning there was in his behaviour. "He's a severely disabled boy, severely disabled intellectually most of all, he can't speak," Brown said. "But he has a presence. And he does things to me and to his sister and his mother, and I wondered what those things meant, if anything."
In describing the difficulties of caring for Walker, who is now 13 and not toilet-trained, Brown said that he tried to be "dignified about it, but candid." He was conscious of the fact that he was writing about someone who can't grant or withhold permission. In the end, Brown felt he managed to be both frank and respectful of his son.
"I became convinced that Walker had something to tell the world though he could not express it in words, and it could not be quantified in the way we usually quantify things, you know, how big is your audience, how much money do you make...," Brown explained. "And I wanted to find that."
Brown describes Walker as "a character, an unpredictable, very likeable guy who is a lot of trouble." He added that his son needs round-the-clock care and can't be left alone, because he has a tendency to self-harm. "But in a funny way, if you're a parent of a disabled child, it's much worse than you ever anticipated. But it's also much, much, much more rewarding than you ever anticipated."
He went on to say that "the 80 per cent of Walker's life that is very hard is more than compensated for by the 20 per cent that is absolutely graceful."
Walker's early years were emotionally and physically draining for the family. Aside from having to be constantly watched, he had to go to the hospital once or twice a week for the first five years. Brown said that he often felt angry and frustrated — and guilty, not just because Walker couldn't help the behaviour that was so aggravating, but also simply because of the fact that there was something wrong with him .
Brown admitted that he actually contemplated suicide, and the possibility of taking Walker with him. "Because it seemed unmanageable," he explained. " It took up all our lives, it took up all our resources, it took up all the patience we had for each other as a couple...and it was exhausting, physically exhausting. "
The family spent eight years trying to find an assisted-living facility where Walker could live part of the time and finally did manage to do so. He also has a nanny, Olga.
Money is a big issue in caring properly for someone like Walker, Brown acknowledged. He said he couldn't imagine how lower-income families in similar situations can cope. But he also felt that the needed resources and expertise are just not there in part because of other factors.
According to Brown, Walker wouldn't have survived if he'd been born 20 years ago. Now he can, because of advances in medical technology. "But the medical profession doesn't know how to do the daily stuff and neither does anybody who's a parent," Brown pointed out. "I think as a society we're afraid to think about disabled people...Their lives don't conform to what we think of as productive lives."
Brown believes that we have to change our attitude to the disabled. "We think we have to make them like us," he said. "What we need are communities where they can be who they are, and we can learn from what they have to show us. "
Brown has also come to see received notions of the mind and the brain differently as a result of Walker. Observing his son and trying to figure him out has made him see the world in new ways. "If we could train ourselves to do that we could expand our notion of what it is to be human, in a way."