Photo: Vintage Canada
When Ian Brown wrote his memoir, The Boy in the Moon: A Father’s Search for His Disabled Son, his son Walker could not speak or eat solid food. At the age of 12, he weighed only 54 pounds, was in need of diapers and had to wear cuffs on his arms to prevent him from harming himself. Brown's son was born with cardiofaciocutaneous (CFC), a rare disease that fewer than 300 people in the world live with. Brown's book, which was released seven years ago, was described by Quill and Quire as "honest, self-critical, poetic and moving." The story made both the Globe and Mail and the New York Times Best Books lists, and went on to win the Charles Taylor prize for literary non-fiction and the Trillium Book Award.
Today, Walker is 20 years old. Residing in an assisted living home, with scheduled visits to his parents' place, he is still able to both confound and inspire his family. As his father says, "his awareness of the world is a little more noticeable," and he's revealing a "slightly more distinctive personality."
It is in the small moments, like the one that occurred during a family visit, that offer glimpses of this emerging character. Brown relays the story of when Walker, while at his parents' home, tripped over a bag his mother, Johanna, had left out and scraped his knee. For hours after the fall, anytime Walker saw his mother, he would grunt at her. It wasn't until four or five hours later, when Walker approached Johanna and nudged her arm, that the Browns realized Walker had decided to forgive her.
"You piece together from what's available," says Ian. "You deal with how he is rather than how he is supposed to be."
“He still looks 12, or 13. He still functions at the level of a one-and-a-half-year-old. We are still caught in the place that so many parents of intellectually disabled children are.” How does one really connect when so much of a relationship is consumed by caregiving?
Brown believes that when you encounter those with severe disabilities, "you are as disabled as they are," in that you both are at a loss for how to interact. “This makes you kind of equal, it makes you the same," he says. "And that allows you to connect.”
Now, in his last year of school, Walker is still revealing his potential to his father. For example, every day before class, the young man collects and puts away the backpacks of all his wheelchair-bound classmates. Then, at the end of the day, he gathers them again and returns them to their owners. “I was surprised by this daily activity,” says Brown, who, for the first time, saw his son contribute to the outside world in a tangible way.
“There are many ways to contribute, and they are not all based on success or accomplishment,” reflects Brown. And while he understands that Walker will never marry, drive a car or rise to the top of a profession, he has also learned that these typical milestones are not everything. “The more we move away from our focus on being the best, and instead work on how we are relating to other people—that seems more important to me these days.”
This concern of connection is one that resonates with many parents, including father and writer Emil Sher, who has adapted The Boy in the Moon for the stage. "I think there's always a need for writing that challenges us," says Sher. "Writing that asks questions that, in turn, ask us to pose our own questions."
Sher's production, which incorporates writing from the book and original interviews with Brown, Johanna and their daughter, Hayley, has its Toronto premiere on May 8.
"The Walkers of the world, in all the best ways, force us to see life through a different lens," says Sher. "It helps to have truths we already know restated, just to remind us of their importance in shaping who we are and how we interpret the world. I was reminded in tackling this book that life is complex and layered. It's not black and white. And I think it's in the greys that we discover what life is all about."
The Boy in the Moon is playing at Crow's Theatre, May 8 to 27.